Hi everyone, I'm after a little advice regarding my 4 year old daughter, we believe she may have autism and would like to know more about the process of getting a diagnosis. Her nursery are aware as well as the health visitor and the GP that her speech and development is delayed for her age, but autism is yet to be mentioned. She is currently on a waiting list to see a pediatrician - I'm guessing this is who will diagnose her? I am only going on the symptoms she is presenting after seeing a documentary on TV.
My daughter is non verbal - although she does say no and speaks her own little language (on a waiting list for speech therapy). She doesn't always respond to her name straight away, she seems to be in her own world and has trouble understanding simple instructions. She also makes a constant humming noise whens she excited. She often has emotional outbursts when she's frustrated (because we can't understand her) or when she's tired and it can take ages to calm her down, it's heartbreaking.
Just recently she has become reluctant to go out anywhere too, even just out in our garden. I have to physically pick her up and put her in the car as she won't walk anywhere or get in a buggy. Something has triggered her and we have no way of finding out as she can't tell us.
As a family we are so worried about her and feel that we are in limbo and are desperate for support. She isn't naughty or hyperactive, she isn't uncontrollable. She is a really sweet, funny and content little girl the majority of the time with a brilliant memory. It's just the communication side of things that is causing a barrier.
I'd be grateful for any advice or to speak to someone who is experiencing a similar situation, particularly non verbal children.
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I'm sorry you are going through such a worrying time.
Have you contacted the National Autistic Society? they have a helpline where you can raise your concerns.
Also, does your area have a local autism group where you can speak to other parents...your health visitor should be able to tell you if there is one in your area.
I think you need to get the diagnosis asap.
My son was diagnosed at 18months but that was 30 years ago, I believe they leave it longer now.
I haven't contacted the national autistic society, I just assumed it was for people who have a diagnosis. I will call them and see if they can point me in the right direction.
I've looked into groups in my area but nothing comes up, I've even asked the nursery but they aren't aware of any.
It's very lonely especially when all of her peers are coming out of nursery telling their parents what the did that day. Plus I've only been in the area for 6 months so i don't know anyone.
Can I asked what prompted you to get a diagnosis for your son? Or was he referred by a health professional? My daughter's care has been a shambles, she never had her 2 year check and I had to fight for every referral - she also has hypermobility.
Thanks again for taking the time reply, I really appreciate it š
In reply to your question on what prompted me to get a diagnosis for my son....
no eye contact, repetitive behaviours ..spinning around...no speech..The health visitor made a referral to the local child development centre where a he was diagnosed.
My daughter has had her official diagnosis today after what feels like almost 3 years of hell. She is now 4 1/2 years old also and is non verbal
She sounds like your daughter in some ways. especially with things like nor responding to her name and not understanding or following simple instructions. When she is in a good mood she goes around making lots of noises and babbling away to herself it's like she has her own language.
The communication side of things is a real barrier and makes it so much harder for me especially with her going to school and nobody in her class is like her. There is a boy in her class who has autism but he actually speaks and doesn't seem to have the same difficulties as my daughter it just goes to show how wide the spectrum is but it truly can feel very lonely as a parent.
with regards to the process of how this went for us at her 20 month review my daughter was below the chart on all the heath visitors expectations? if that's the right word and as such she was put forward to child development centre for referal for autism and speech and language therapy. this being delayed due to covid we was initially told she would need a hearing test before and speech and language support could be given to rule out hearing difficulty. total we waited was 14 months just for this hearing test and fast forward to now she is 4 1/2 and we have been told today by child development center who gave us her diagnosis they do not think this is right for her at this stage.
as for the child development center and the diagnosis process we waited months for a telephone appointment and then several more for a face to face appointment. we didnt see them from march last year until last week when they went into school to do an assessment in her school setting. Then the appointment today they gave diagnosis.
I wish I could say it was a simple and straightforward process but it hasn't been and I feel like at stages we have really had to fight but you know your child and you know if something isnt quite right. If you ever need a chat I will answer anything I can help you with
Thank you so much for reply Teagan, it's really helpful and our children sound so similar. Amelia too babbles in her own little language when happy. She seems to be in her own world most of the time and often stares into space.
It sounds like the process was a nightmare for you and your family and I can completely relate. Amelia also had hearing tests to ensure it wasn't her hearing and it was fine. As a family we are desperate for support as it's heartbreaking.
Can I ask does your daughter have emotional outbursts? Especially when tired or frustrated? It can take ages to calm her down and understand what she wants.
Its amazing to me to find someone who's daughter sounds like mine. Albeit I'm sorry your going through the same as me it's good to know we aren't alone. Aria seems to prefer her own company to others. She prefers adult to children but if she had the choice I think she'd rather be alone bless her. her teachers say she can "tolerate others š¬ this is suppose to be goodš¤£š"
Yes it has been a nightmare but I think we are lucky we got the diagnosis and we don't have to go through an appeals process and we didn't have to fight like some families do to be put forward for the referral so we are lucky in comparison to someā„ļø. It's so hard to find that support and I think that's the hardest thing about it all especially as you want to reach your child and when that communication barrier it's so hard to work out how to do that. If you ever need to chat I will try my best to help
She does have emotional outbursts, she has many tantrums and mostly I think it's out of frustration when she wants something and we don't understand what. Unfortunately this can lead to her flopping to the floor sometimes causing a bang to the head or her lashing out scratching biting nipping sometimes herself sometimes others. This is something else I find really difficult I 100% understand the reason she does it but this doesn't make it any better for the person on the receiving end. She doesn't have emotional outbursts when tired much if she's really tired she sits and doesn't really do anything at all which sometimes is just as hard to watch
unfortunately no Speech and language therapy. child development center have decided it's not the right time for her with her being so strong willed and very much orientated around what she wants and will do they do not think it will help at present which is so frustrating after waiting all this time. I understand there point of view but it's still hard.
have you looked into DLA? this is something I wasn't aware I was entitled to as I thought you needed a diagnosis but it's actually based on care needs not diagnosis. It's been really good to have to buy her sensory toys as she loves these and also any other things she likes/ may help her
Thank you for the offer to chat, you're right it is lonely and I've not met any other parents of a non verbal children, so I'm happy we found each other š. My name is Hayley by the way.
The speech therapy situation doesn't sound right to me. I thought Aria would have been priority especially if she gets physical when frustrated, that's not nice for anyone involved particularly hey bless her. Surely if she is able to communicate better she would not feel the need for the outbursts?
The barrier is completely heartbreaking, Amelia will look straight at me and say something in her little language all animated, then look at me for an answer, I could just burst out crying as I have no idea what's she's trying to say to me and feel so helpless. It can be frustrating for all involved.
Amelia had a zoom call in November with a speech therapist who has now put her on the waiting list to have a face to face appointment. I've heard it can be months. We waited a year just for that call.
Amelia likes her own company too, she has only just started to engage with the other kids at nursery. I try to play with her at home but she's not interested, except if it's sensory and messy!
You are very lucky to have had a diagnoses, the nursery are pushing it as much as they can but there's only so much they can do. I might make an appointment with the GP again and raise my concerns. No one else in the family has autism so this is all new to us. Deep down I've always known something want quite right with her but hoped she would just simply grow out of it. It's only this past few weeks that I've had the courage to say it out loud and look in to it more.
Does Aria make a continuous noise when happy or anxious? Amelia makes a continuous humming noise when she's excited. Also is she potty trained? We are finding it impossible as she can't tell us when she needs to go. I don't even think she knows herself or makes the connection.
I didn't know about DLA, how do I go about it? I'm not very good with benefits and stuff.
Hope you have a nice weekend, please don't feel you need to reply straight away xx
Apparently my replies are getting bigger not smaller š¬š¤£
Lovely to meet you Hayley š
Yes it doesn't seem right to me either especially after being told for over 2 year we are on a waiting list. We will receive her report from child development center and the reasons why they have made the decisions at some point so when that comes I will have to see if we can appeal that decision especially as a lot of her frustration and meltdowns comes from the barriers in her communication. One of her teachers has also said she thinks her frustration comes from lack of communication too on several occasions so it's not just myself who thinks this is the case
Im so happy I found your thread too. sometimes it's nice just to talk about how my girl is without being judged even if nothing physical can be done to help. Knowing your not alone is a massive thing in itself.
Aww bless her that's definitely heart breaking. What I try and do is look at the positive in a negative. In this situation its absolutely amazing she's giving you that eye contact and she is trying to communicate with you. For me that makes it a little bit easier to cope with.
Aria very rarely gives eye contact and she babbles to herself more than others but go back 12 months and she didn't even babble to herself so there's still progress there which is fantastic.
That's good that your on a waiting list. Is there a way to contact them to ask where abouts in the queue you are/ when she will be seen? It feels never ending all these waiting lists.
Arias play with me is very limited too. I can play when she decides it's ok but she likes me to be sat with her when playing sometimes which is her way of playing with me and that's ok too. The fact she wants me there is lovely in itself. Aria loves messy play too anything messy which is really hard with her younger sister as she likes to out everything in her mouth and is a general mischief š¤£
Aria didn't want to play with the other kids at her school she's been there and 15 months now and she has a few children who wait for her at lunch time which is lovely to here as it's something I never thought she'd do 6 months ago she still didn't have interest in other children and even now she pushes them away won't really share and will only play with others on her terms this worries me for her building proper friendships. The thing is this will affect us more as parents at the moment as I find it really upsetting but to Aria it's normal and she doesn't want or understand building friendships. hopefully that will change in time š¤
her teachers words are she 'tolerates' other children š
We contacted cdc a few times and they just kept saying covid delays etc. It was our health worker who put our referal in is there a way for you to contact yours? maybe it coming from a different outlet may help. Seems every are the process for diagnosis is different. Our doctor basically said well referral to CDC has been put in nothing we can do which was super helpful š
At present the majority of the time she's making some noise or anotherš¤£. Louder when she happy. She's very withdrawn and quiet when tired. Unfortunately not potty trained, we have recently started recieveing nappies through the NHS they do this for age 3 and over. Our health visitor put in the request on our behalf. This helps towards the cost but how to potty train her we are at a loss. at present she has just started showing signs of wanting to potty train she sat on her potty to do a wee a couple times this week which is amazing. But she can't tell us when she needs to goš
Arias dad and her cousin on her dad's side have it so it's new to me too really. Its crazy her dad as an adult and most people wouldn't know he has autism. Its so hard. initially when j started to think there was something not right with Aria i was thinking OCD or something it was as soon as my partner's mum visited she said straight away it's autism.. she doesn't live near us so hadn't seen her for a few months. Crazy how matter of fact she said it. I was still in denial at that point like no she's just delayed with speech etc š it's hard to accept I think because it's not just a phase or something they will grow out of its something that will affect them forever. But half the battle is accepting there's something not right and your now doing your best trying to find out as much as possible to help your child which is amazing.
I downloaded the DLA form online and filled it out. it's a proper head fuc* sorry for my language but there's no way I can say it nicely and honestly one of the hardest and longest forms I've ever had to do. But if you do decide to go for it if possible I will try and help with any parts your stuck with.
You can call them for the DLA form and they send it in the post and as long as you complete it within the month deadline I think it is they backdate to date you call which I didn't know and just printed the form at homeš¬
it's long and detailed the beat way I found to do it was in sections and not attempt it all in one go. They also ask for any documents you have to support what your saying. reports from school/nursery or doctors referal and any other paperwork from other professionals involved
I replied as soon as I saw your message š I'm forgetful so try and do something when I remember š
Hi Teagan, sorry for the late reply, it was Amelia's birthday today and we had a little tea party for her. Just a few friends and family as we didn't want to overwhelm her. That's another thing, birthday parties, I've tried taking her to a few but she just crys and won't settle. She literally climbs up me for me to hold on to her.
Don't worry about the length of the reply! Haha, I did laugh when I read that. I'm grateful for your advice and friendship š
I would definitely appeal the decision, it should be whats best for Aria and her happiness. Could you not get a second opinion? I was talking to my friend yesterday, her son is just below the threshold for autism so he didn't get a proper diagnosis. She was thinking of going private at one point as she didn't agree. My dad has offered but I know it's going to cost thousands plus I don't know if it will just be an assessment or they refer you to someone for ongoing support. No harm looking into it I suppose.
I didn't know about the nappies! How do I do that? I spend so much on them it's ridiculous, plus have a 5 month old little girl too so it all adds up! Did you say you have a another child?
The word 'tolerates' is a bit strong lol not all children want to engage especially at this age. My friend bought round her 2 year old today for the party and Amelia wouldn't share or play with her at all really. My friend understood as she obviously knows Amelia but it can be embarrassing with other children.
I was in denial big time, I kept saying she'll get there she'll talk one day. My sister used to point certain things out about her, not nasty but just things she should have been doing at certain milestones and it really used to get my back up. But I wish now that I took more notice and listened. When you have a baby you just expect them to be, I hate this word but 'normal'. It still upsets me now when I look at her and I wonder what she's thinking, I imagine she's so lonely. My mum and sister wasn't shocked when I finally had the courage to say it out loud which upset me too, thinking that people already made their assumptions about my little girl.
I will attempt the form for the DLA this week when Amelia's at nursery. Thank you for your offer to help, you may regret saying that! š
No need.to be sorry I hope she had a wonderful day it's youngest daughters birthday Wednesday š„°. We aren't planning much I'm going to take her somewhere whilst aria is at school and then just us for our tea party. We don't see much of our family at the moment. Aria hasn't been invited to any parties but I can see them being hard for her if we do. It's hard to decide how to celebrate her birthday as she gets over whelmed by so many things.
Haha it's like in writing an essay for school or something š¤£š¤£
I don't know if it's possible to appeal but it's definitely what she needs for her happiness and that has to come first although it's so draining all these battles to get these things for our kids. When they should be given to people who need them.
Paying for Speech and language and occupational therapy is an option which is good to know. It's always good to have a back up plan and if needs be her DLA will be put towards this
Its always worth exploring all options available even if you don't gown down route of private it doesn't hurt to look into the information available and see what they say. Your friend should definitely have appealed the diagnosis. We knew that's the one thing we could appeal and I was expecting to have to appeal I'm so relieved we don't. Things shouldn't be this hard to get what our child needs to survive.
With regards to the nappies it was our local health visitor who put in a referal for us to receive them. A friend of mine called her health visitor and asked if its possible to get free nappies for her son and they put the referal in for her room so it's worth asking your health visitor. usually the number for your local is in your red book?
They deliver a 12 week supply it's a set amount so doesn't last us 12 weeks but it's a massive help for us.
Yes she's 2 this week also still in nappies they cost a fortune! We've always used Pampers till recently we are currently trying mamia from Aldi and they are significantly cheaper and ok for both girls at present š¤š¤
Its what they've wrote on her EHCPlan. She's overall not good with children she's improving but she still really prefers her own space. It's hard when its people you don't know your or your child and people like to stare in public it's not nice. But unfortunately it's something we will have to get use to. We went for dinner other day and aria initially was almost having a meltdown as she didn't want to sit but we narrowly avoided it and 10 mins later she's squealing away like a banshee and bar lady was proper staring at us and giving us horrendous looks. People who don't live with these behaviours don't understand
She may be lonely but from what you've said I genuinely don't think she is. Same with my Aria I think she has her struggles especially with the communication barrier but her squeals and laughs I think she's content in herself. I haven't given up hope that aria will talk but back when she was younger I was 100% oh it will just be a speech delay she will talk soon.
It's hard to hear it when it's about your child though. Especially as it's not what you want and its something that will affect rest of there lives. But my Aria wouldn't be my Aria if she was normal and I wouldn't change her for world. Shes sweet funny and she loves her kisses and cuddles (all these things are on her terms and in her own way) but she's just different to others and that's ok too.
Yes we don't see a lot of my family much and really got my back up when they decided my girl wasnt 'normal' like why do you think it's ok to judge or decide that for her. I'm sure they mean well but it makes it hard.
Nope I won't. If it helps you and your family it'll be worthwhile āŗļø
This is a website I've found yesterday. It looks like it has lots of information and there's also a 1:1 chat Service available on there both for families with or without diagnosis. I think I will be contacting them at some point soon after I've got a list of questions together. Not sure if it's any good to you? Hopefully isāŗļø
Happy 2nd birthday to your youngest for Wednesday š
You need to sit down with a cup of tea for this reply š
Thankfully when we take Amelia out for a meal she sits down really well and behaves herself, but she has sat there in the past and made a loud humming noise because she's happy and I feel people are looking at her, they're probably not but I get a bit paranoid. Also when we take her out for the day she very rarely wants to get out of her pushchair. We took her to the beach the other day with her cousins and at first she was reluctant and wanted to get back in the pushchair, but after half an hour or so she wanted to get out and play on the sand and she had a wonderful time.
We also took her into the arcades where she has had a few meltdowns before and we've had to take her outside but this time she was fine, she even had a go at some of the machines and one some sweets. It all depends on her mood or if something triggers her, and that's another battle knowing what's upset her. I've been keeping a diary of when she had her meltdowns so that I can figure out if there's a pattern. It seems to be high roofed buildings, noisy fussy places like soft play or clothes shops with lots of racks. I once read somewhere that they are the world differently to us so you need to be more aware of sorroundings etc.
We took her on the pier a few months ago and there was massive Christmas decorations hanging up and we don't know if that was the reason but she really got uncontrollably upset. Again because she can't tell us we have no idea what it was. Thats the first time I see my partner get chocked up over her too. She's not naughty or hyperactive, she just gets so upset and is heartbreaking to witness.
Yes it is like writing an essay! But I look forward to reading your replies, you've been such a big help š I was telling my mum over the weekend about our chats and she was so pleased that id found some support. We currently live with my parents as we moved from London to Essex 6 months ago, it was our only way out to live a better life. Amelia has been through a lot these past 6 months what with moving, starting nursery and having a new baby in the house, she seems to have become more withdrawn and regressed. She did start to say works strong 2 and a half like, 'more' 'ball' 'cake' 'all gone' but just stopped. The only word that has been consistent is the word 'no' or 'oh no'.
Amelia was diagnosed with hypermobility at the age of 18 months as she wasn't walking. Apparently it can also affect their speech, so up until she was 3 we believed that was the problem. But when she just suddenly stopped that's when I thought there was something else going on. Autism never entered my head until last November when my aunty came to visit us (she works with children) and mention it in conversation, no one in the room stopped her and said no, they all sort of just nodded along, that's when it hit me. I got a massive lump in my throat and felt the tears appearing. At first I was angry, then I thought how stupid I've been to have missed it. Then the realisation and guilt set in.
My partner said the exact same thing about Amelia, he wouldn't change her for the world, it makes them who they are āŗļø. I just worry for her future as I'm sure you do for Aria. We just want our kids to be happy and healthy don't we.
I will get in touch with my health visitor and ask her about the nappies. I've been using Morrisons own for the baby, but I can't seem to get big sizes in any other makes apart from Pampers for amelia.
Thanks for the link, I will have a proper study of it later. You're totally right that we should've have to fight for our children to have the help and support they need. It should all be a simple process which is fine by the health visitor and or GP. If it weren't for finding you I would know what to do! It's only through talking to people that I've got this far.
Thank you. I am really excited for cake not going to lie š¤£
Aww that's wonderful it's great for you to be able to have that family time and enjoy it. it's hard now to get paranoid. Hopefully it'll become easier with time. Aria still goes in her pram. She's not safe walking without it she will happily run off but doesn't respond to her name or come back we have to put harness on her or the other aternative days when we go out and she doesn't want to walk the same way as we are going she will sit or lay in the middle of the floor and not move regardless of where we are. I've had her do this on roads before now. Definitely not safe walking bless her
I'm so glad she enjoyed her day even if it did take a bit of coaxing at least she enjoyed it and got involved and that's down to your persistence with her.
Aria use to hate the arcades perhaps it's the noise? The last time we went she loved the 2p machines though and one of the ones we went in had air hockey which she also enjoyed āŗļø
Aww thats brill that your identifying her triggers and hopefully be able to adapt her surroundings to minimize them. For aria even the basics seem to trigger her at the moment her hair being brushed and her coat are the hardest at present and both result in her getting distressed.
It's the worst thing about it all I think when there's a massive trigger for them and you have to try and second guess why. Same with when aria doesn't quite seem herself and we think she's poorly but can't pinpoint what's the cause and it's heartbreaking because you don't know how to help.
I'm so sorry you had that experience though especially during a Christmassy adventure. I really wish there was practical advice or support I can give in this instance but there isn'tš
Bless your partner too I know when my partner gets upset about things it's a blessing and a curse because it reminds me he's here and things do affect him too but also it's not nice to see him so upset
Oh I'm so glad I've helped you and you've told your mum about our conversation that's lovely. We have moved house around 8 months ago now it was the worst thing ever around 2 small children but our landlord was selling our old home so we had to move. I actually wish we could move in with family that's absolutely amazing you have the support of your parents because it can be so hard.
it's understandable that she's regressed tho with all the changes its hard as a parent but these are big changes for a little person and it's hard to explain what's happening and why to her just keep doing what you have been and hopefully the regression will pass quickly.. I don't think aria really noticed we moved house it didn't seem to affect her much if she did. I was expecting her to be really unsettled after it but she wasn't which is good I guess. At least you know she has the abilityto say words to you and hopefully she will again soon š¤š¤
Oh no bless her. That's really not helped the situation has it having a condition that affects her speech aswell as potential autism. You do not read minds though you really wasn't to know and shouldn't feel guilty (I say this and I still feel guilty š¤£)
I felt guilty too but it's hard to spot especially when you had a diagnosis for something else. I felt so guilty when my partner's mum spotted it straight away in aria when I didn't but she's been through it before so knew the signs and she didn't know when my partner was arias age its only because she lives through it.
I've only recently stopped blaming myself. Even at this age its amazing for you to have spotted it in her now as you'll be able to get her help and hopefully support sooner. As the CDC lady told me on Thursday there's no guilt in autism.
Oh yes I said the other day to my partner don't you feel like this diagnosis has ruined her life to which I received a flat out no and conversation over. To me I think ruined her life obviously is an over statement but it's going to affect her whole life and make everything so much harder. All we can do is support them and try and help whatever dream they have come true (within reason of course š¤£
I'll keep my fingers crossed with regards to the nappies as it's a big help and hopefully you'll be able to access them and recieve that help too
the 7 nappies are ok for my girls in Aldi but apparently they've started to do a size 8 but I've never seen them personally
Its like even with CDC once the referal was put to them we didn't have a clue this is a proper professional service them having a handout outlining the basics of the referal process would put people's mind at ease and wouldn't cost much at all but there's nothing just wait and wait. There definitely needs to be more information it's such in depth searching to find that bit there seems to be. I hope there is some useful information on that website. For your family and mine. I've been putting it off partially because of time but partially because there's less and less hope now as I look through different websites and don't find anything useful haha.
Whenever i read your replies its almost like you're describing Amelia. I too have trouble with brushing her hair and putting on her coat. She all of a sudden doesn't want to brush her teeth or get in the bath either. Sometimes even her shoes, she will let me put them on her then i turn round and shes taken them off!
She also can run off although not as much lately, but i had the tantrums and the throwing herself on the floor in shops etc. It's scary when they do it in dangerous places. She doesn't do it so much now but she used to throw herself back without looking at what was below or behind her so we had to dart accross to her incase she hit her head. When she has a meltdown now she throws herself on the sofa or if we are out she points to her pushchair signalling she wants to get in - i think she feels safe in there.
Does aria have a favourite toy or item she uses for comfort? Amelia doesnt go anywhere without her Elsa doll. We have around 8 of them in all different shapes and sizes! I think the doll has more fun at nursery than she does the state some of them come back in š
It would be so handy if aldis did do a size 8, I've never seen them either but will keep a look out now. I'm going to get in touch with the health visitor tomorrow and see if she can refer me for the nappies, I'll let you know how i get on!
You're right all we can do is support them in whatever they want to do in life. Daddies are so protective over their little girls aren't they. Amelia is truly the apple of my partner's eye.
I am very lucky i have the support of my parents, they help out especially with the new baby so i can spend time with Amelia. I worry about them to as they are both retired now so they aren't as agile as they used to be plus they have never experienced this before so they are struggling to know how to help. My dad often forgets and i can see him getting frustrated with her (because he's frustrated) and it's heartbreaking. He's not horrible to her its just ignorance which i don't blame him for, it's a learning curve for us all. It wasn't around so much when they were kids as it wasn't understood, they were just seen as difficult or naughty children.
It's good that the move didn't affect aria. I think children are pretty resilient and as long as their family are around them anywhere is home š”
To be honest i don't think I've ever been explained a process whenever I've gone through the nhs for treatment or a diagnosis. I feel like I'm on a conveyor belt. They talk to you like you should know what's happening and then i feel stupid because i don't. I've never been very forward or spoke up about things. I'm frightened i will make myself look silly but when it comes to my children, i need to start being more assertive and ask questions. Some people in life seem to get everything done for them and have things just fall on to their laps.
I was given a number by the nursery for a family support service, i think they are just a sign post to services available in the area. I just haven't got round to phoning them. Perhaps you could enquire as to whether theres one for your area? I was told that the services are limited due to covid though š
It's absolutely crazy and amazing I've never met anyone who's child is so similar to mine. Aria is the same with baths and she hates her teeth being brushed. She did that this morning with her shoes was a nightmare š¤£š
it's so hard aswell when you don't know when to expect it and the safety side of things it's torture to me I feel like my heart stops when she flops and al.ist bangs her head or is having a tantrum everytime I imagine the worst.
Aria likes her push chair I feel like it's her safe space. She goes in the under part of the pram when she gets too overloaded an she will literally curl herself up in the bottom bless her. I'm so anxious though she's getting taller and bigger in general soon she's not going to fit in it. We have a side by side buggy and she hates it at present š
Not really a favourite toy she used to need one of our bathrobes to settle. She was only about 18month old when we last went on holiday abroad and we had to take 2 of the big chunky bathrobes with us one taking up an entre hand luggage bag lol! Her sister has recently took a liking to teddies so Aria seems to be copying as she's started hugging this bunny teddy she has. It's kinda cute to be fair āŗļø
I'm glad that's not a battle we have, neither of these need a specific teddy to settle thankfully!!
Funny you mention frozen though aria has just got into frozen and will wear the Elsa dress out of the schools dress up box. She has never liked fancy dress but loves the else dress school have
Did you speak with the health visitor? š¤š¤
It's wonderful you have his support and I have my partners support.
Yes I bet it's hard for them too. My mum always use to say I've been there and done this 5 times Teagan I know how it all works etc, etc. Then she had Aria one day last summer she brought her home in less than an hour. Baring in mind the place they went was 40 mins (20 there 20 back)
She starting having a meltdown she wanted to go on a slide but it was broken my mum didnt know what to do. I think that was the day my mum realised how hard it was with Aria. There's so many things now autism Adhd that wasn't there years ago it was that's a naughty child. Its amazing for our children things have changed as it means more support but it also means as parents there's so much more to learn. I'm so sorry your dad finds it difficult I have days where I get frustrated too but in a way that's good because it will hopefully help teach our children about emotions. We just need to try and find a good way of doing this.
I wouldn't worry about looking silly if you don't understand. People expect you to understand too much and it's not that easy when you don't work there. Just ask anything you need to ask you have to at this point for your children. Im the same to a point or I just completely blank. I've started writing things down for this reason tho. So I have the q's ready in advance. It's so hard to change your mindset when you don't normal question things though so don't feel bad for it. Just try and ask more next time
Yes and it's never me š¤£š
Covid is literally the excuse for delay in any service or doctors or literally everything just lately. Yes I get the fact it's there but it really is just an excuse with some places. I can enquire but it don't think we do worth asking though thank you āŗļø
It is crazy how similar they are. Excuse my ignorance but what is a side by side pushchair? Is it the same as a double buggy? I've been thinking of getting a buggy board to attach to the babies one. Not sure if Amelia will like it though but it'll be so much easier when i collect her from nursery. At the moment my mum watches the baby whilst i go get her in her pushchair.
Oh no, your mum must have really not known what to do in that situation for her to bring aria back home. It's so difficult for everyone involved. On one hand i understand and then in the other is upsetting that people can't find the patience. I have a niece and nephew who are a few years older than Amelia and when they were young, my mum used to have them weekends and take them out to the park quite often, i know we live with her so it's a bit different but she doesn't do it so much with Amelia. She will watch her at home as she's no trouble at all, (you just need to stick toy story on the tv at the minute!) But i think shes worried she won't know how to react if she has a meltdown or she can't understand what she wants and it's such a shame. It makes me feel like she's missing out.
That's really good that Aria copies your youngest. Does she pay much attention to her? Do they play together? Do you mind if i ask if your youngest has signs of autism? That's also going through my mind too, what is the baby had it as well. Amelia takes no notice of the baby, but the baby, Emily, (i can't keep referring to her as 'the baby' forever lol) can't take her eyes of her! She follows Amelia around the room.
Amelia absolutely loves dressing up, she too has an Elsa dress and whenever she sees it hanging up on the clothes horse or in her wardrobe she points to it and gets so excited. She would live in it if she could! š
Yes covid is an excuse for everything now days and it really winds me up as things are in a sense returning to normal. I get there are waiting lists etc. But i raised my concerns about Amelia long before it all happened.
I spoke to the health visitor today and she said they are only entitled to the nappies if they are over 4 and have a diagnosis. She then went on to say it's a 6 months waiting time for a pediatrician and Amelia was only referred in November. I also phoned the dla but even the waiting time for that was ridiculously long and i didn't have the time to wait so I'll try again tomorrowš¤
I ordered a new toothbrush from Amazon for 2-5 year olds which is u-shaped and Amelia loves it. Not sure if you've seen them but Aria might be better with it too. I've also started to get amelia in the shower instead of a bath and she prefers it, she likes the sensation of the water on her. Sensory i suppose.
Does Aria go to bed ok? Do you have a good routine with her? Amelia used to just leave whatever she was doing and get up and go straight upstairs whenever i said it was bed time, and bath time for that matter. But now it's such a struggle. The only way she will settle is if she falls asleep on the sofa and then i have to break my back carrying her upstairs. Plus it's very rare that it's before 10 clock š. In fact, she has just this minute fallen asleep next to me! š
My dad quite often watches Sophia for me when I go to school for Aria
Im not 100% what the difference between buggy and pram and pushchair is I thought they was all words for the same thing lol but there is apparently a difference? Crazy!š¤£
We have 2 prams with 2 seats. The side by side one is literally where the seats are side by side and level with each other. The other one we have is one seat is behind and lower than the other. Aria will not entertain the buggy board. She doesn't like it and obviously there's no security to it so if I can get Sophia to like it that may be an option lol
I don't think any of us do to be honest it's so difficult when they are struggling and having meltdowns. I feel so out of my depth and I constantly feel like I'm failing my girls. My mum use to support my sister's with there kids and see them a lot and look after them whether it be home or out and she doesn't do it for my girls so much. Occasionally Aria but not Sophia. I feel like she thinks it's too difficult and it does feel like they are missing out
Maybe with you living with your mum shes not even aware and just thinks she's spending time with her so it doesn't matter where it is? It's hard to ask people to watch both of my girls especially Aria with how she is one I get anxious at leaving her and two you just don't know how she will be for whoever it is looking after her.
On a whole no not really and I feel like Aria hates Sophia for the longest time. She's push her over everytime she came near. She bites or nips etc. Aria likes her space and Sophia doesn't understand that. Aria is improving though. She will let Sophia in her space sometimes. Sophia cried the other day and Aria hugged and then kissed her I was almost crying because I was so emotional for me. Aria has never showed signs of understanding emotions before and obviously it's so affectionate too. They don't really play together not intentionally. More so one will steal toys (usually Sophia from Aria) then she runs off with said toy and when aria catches her she takes it back or Sophia gives it her š
Sophia isn't showing signs of autism at present. She says more words than Aria. She does copy some of Aria behaviour. She also has her own mischievous behaviour š¤£. Sometimes it's hard to tell what is her own behaviour and what she's copying.
But what she does do is when she knows she being naughty she will wait till your watching and she will look me dead in the eyes and do whatever naughty thing I've just told her not to do and laugh. So 1 eye contact and 2 she definitely understands. Aria very rarely does eye contact even nowš
She also responds to her name for the majority of the time which Aria doesn't and never has done.
Haha! Tbf I refer to Sophia as baby sometimes even now and she is 2š¬
There is a chance Emily will have it but try not to worry about that right now just appreciate her being small whilst you can it goes so quickly šš I know this is easier said than done because I worried about Sophia and occasionally I still do now
I'm still hoping Aria will start to like dressing up and not just the one dress up dress š¤£ Aww I think it's great she has these things she absolutely adores. Aria likes lots of things but she doesn't have the special things she goes to everytime or that would help calm her.
I'm the same. Covid isn't going away we need to learn to live with it people can't keep putting there life on hold. As for the waiting lists I feel like it's an excuse as diagnosis means referals which means money needs to be spent on providing the services and they don't want to pay out.
Oh no way! That sucks
Your area must be different to mine as my daughter wasn't 4 and didn't have diagnosis when we started to get them. Same with my friends little boy he's not 4 till march and doesn't have diagnosis and she's been receiving them around 6 months. She was offered the service as soon as he turned 3.
Did you have any better luck with DLA? Seems rubbish on all fronts for you with these services really hope you had better luck today
Omg no way!! We ordered those last weekš¤£š¤£. Both these 2 love them but only to throw round room or chew them still having difficulty with teeth at the moment š
Aria absolutely screams at the shower. She will get in the bath but only if toys in it which sometimes prove enough of a distraction other times she has meltdown
Up until September Aria use to sleep really well around 12 hours per night. Since then she's had a cough and god knows how many bugs and is now absolutely horrendous! Her routine has turned to mush. I'm struggling so bad with sticking to routine when most days at bed time it's just me with both girls. I know she needs a consistent routine so it's not helping but generally she's going to sleep at 10pm or around 10pm and is up by 7am. Sometimes she wakes in the night and she seems to like sleeping on the floor as I regularly find her there with her pillow and blanket she sets herself up a mini bed in the middle of her room makes me feel awful to be honest. Her bed time is 8pm but as soon as we leave the room she's up playing. We put her back and repeat process but the more times we go in and out of our room the more likely Sophia will wake as she shares our room. Sophia is a nightmare for sleep though she always has been she's regularly up in the night. Seems I can't win with sleep š
ironically Aria has just caved and gone to sleep š¤£ pretty much bang on 10pm. She has a safety gate on her room which at least seems to keep her in there. The main problem is when she plays banshee and starts squealing at top of her lungs and wakes Sophia or banging as that seems to be a favourite at the moment.
Oh i see, the seats are side by side. I think prams are for babies and pushchairs, buggys and strollers are for toddlers? I like the double buggies but aren't they hard to get in and out of shops? I might get a buggy board and see how Amelia is with it. I have a feeling it may be a novelty for a while then she'll get fed up with it.
Yes i think you're right, because i live with her she sees that as spending time with them. Don't get me wrong she is a massive help, she'll quite often fed emily or get her to sleep if I'm seeing to amelia. Or if i have to pop out somewhere she'll offer to look after them both so i don't have to faff around with getting them both in the car etc. She took Amelia out a few times when i was expecting emily actually so i could rest too. I can't help but compare to my niece and nephew but then they are 12 and 9 so she was a bit younger then too! š
That is so lovely that aria showed emotion towards her sister, i bet you did get emotional i would have done too! That just shows that she has empathy which i know a lot of autistic children don't have. What a sweet moment for you all. I suppose it's hard with sophia coping get sister, is enviable really. Little sisters look up to to their big sisters. I can imagine sophia being very protective over aria when they are older and visa versaš
How funny that she knows she's being naughty but still does it. I can't help but laugh at the things Amelia does, although most of the time i know i shouldn't but it reminds me that she's still a child and that's what children do so in a way i like it - does that makes sense?
Emily isn't showing any signs but i guess it's still early. She is more responsive than amelia was and shes trying to stand up already! I keep comparing her to Amelia when she was a baby and she seems to be hitting milestones sooner. Did Aria flap her arms a lot when she was a baby? This is one of the things my sister picked up on about Amelia, i just thought it was what babies did!
The reason i worry is I'm sure Amelias delays and signs of autism is a result of an illness i had when i was pregnant with her. I suffered really badly with hyperemesis gravidarum, and when I've looked into it, studies have shown an increase of developmental delays in children born to mother's who suffered from the illness. I didn't have it as bad with Emily but i still suffered. This is the only logically conclusion i can come to, as I've mentioned before no one in mine or my partner's family has it and ive i heard it's hereditary?
I phoned the dla yesterday and they've out a form, i should recieve it within 5to 7 working days. Oh i forgot to mention, my health visitor said going private is a waste of money because they too have waiting lists so you wouldn't get seen any sooner!
Yes it must be the area i live in about the free nappies, just unlucky i guess! š
Oh how funny that you've bought the same tooth brush! Do they both like it then? That's good! Amelia loves it as she's got a thing about putting non food items in her mouth constantly. I'm forever telling her to take things out of her mouth. She also has a thing about chewing on her hair now too.
Oh bless her about the shower, do you think it's too over stimulating for her?
Yes routines are a battle aren't they! It's strange how certain things disrupt them. I guess for one they are getting older and are changing and two it could be to do with the time of year? Dark nights, the weather etc may play a part in it. Ah yes colds! Amelia hasn't been well since she started nursery in September! She has a new cold every week. I'm sure she had covid over the weekend but i refuse to test her, i just can't put her thew it.. Apparently there have been 3 cases in the nursery and some of the mums are freaking out š
I have been lucky with sleep with both of them. From around 2/3 months old they have slept through the night. Unless they've been unwell.
This is mad how similar aria and amelia are. I often find amelia on her bedroom floor with her pillow and duvet! She even does it during the day, she'll get the cushions from the sofa and a blanket and make a bed on the floor. She lays down and rubs her legs on the floor all excited. Try not to feel awful, although i totally understand as i have in the past. She is obviously comfortable and happy or she would cry out.
Amelia has a safety gate on her door too, her game at the moment is throwing her toys onto the landing or down the stairs š i have a monitor in her room and i can hear her chatting away to herself in her own little language. It makes me smile every morning š i think it's a lovely way to be woken up. She used to cry and make a moaning noise before but she doesn't do that so much now.
Yes they can be the side by side one is hard to get in and out the house. The other one isn't too bad as one seat is behind and under the front seat it's narrower. Although still bulky I call it my mini tank haha. It's definitely worth trying with the buggy board. I got mine from during a baby event not sure if was Aldi or Lidl it only cost Ā£20. What I've recently been told is consistency is key even if they don't respond well so I'm gunna try the buggy board again š¬
Oh yes from what you've said she sounds like a massive help I didn't think you was saying any different it's just you also want the same opportunities for your girls too like your mum taking them places. But you've actually got it so much better in a sense because your girls will grow up with you and your parents so they will create so many other special memories.
Yes it was amazing š Doesn't mean it's going to be consistent but it's a starting point.
Yes to be fair most of the time when she misbehaving I laugh and I know I'm not doing myself no favours but she's so cheeky with it and obviously I didn't have those moments with Aria.
Sometimes it's so difficult not to laughš¬
She did when younger and she still does flap her arms when restless. Although it has decreased a lot as use to be everyday school tires her out a lot in the week now.
Its more likely in children when there is a family link but any child can get Autism. I wouldn't try to think about why she has got it or why she's different if at all possible because usually that's where you start to blame yourself or a condition you have had or in my partners case he blames himself and the bottom and top of it is it's nobody's fault. As I said to him there is no use feeling guilty over this it's 100% not his fault and him blaming himself doesn't actually fix anything for anyone.
That's good you've got the DLA form issued thenš¤ hopefully arrives soon. At least you know about it for future reference if you still need it later. I thinks its so wrong how different service like this run from area to area they should just be the same across the board
As a tooth brush no but as a chew toy yes it's great lol š¬ Aria likes to chew her fingers a lot at the moment. I'm constantly having to pull them out bless her.
Maybe she just doesn't like it at all. Even as soon as it's turned on she screams.
Arias school have made me get her a test otherwise she has to isolate from school till the period would have been over. It's largely due to illnesses and school keeping sending her home for being unwell or having a cough when she has asthma anyway it's silly.
We've had lots of cases in arias school too. Back in September myself and Aria both had covid
Oh I wish I've been so drained emotional and physical due to how little sleep I've been getting between the pair of these I feel like a zombie š
Aria takes all my cushions off the chair and or sofa too. Sometimes creating a bed on the floor sometimes to stack other times she tried to make a den with her blanket. The only thing about it with aria is all of these things are all well and good till I need my floor back then she cries coz I've moved the cushion or blanket she likes them just where she left them
Oh Aria has and still does this many of the time. The worst thing being my iPad which obviously cracked it's screen š¬š¬ that's good that she doesn't cry. I'd take laughing giggling babbling away and day over them crying ā„ļøā„ļø
Oh poor you with the lack of sleep š i do feel for you. I think disturbed sleep is worse than no sleep. I get so grumpy when tired! I don't suppose you have time to rest during the day? Does Sophia go to nursery?
Ah yes, Amelia threw my phone in temper just before new year and it completely stopped working! I had to go to the O2 shop new years eve to get another one. Mind you i ended up getting the new Google phone so it weren't all that bad!š
I got her a tablet for Christmas, one of those Amazon fire ones and it's got some really good games on there for learning shapes, colours etc. I've also downloaded a speech therapy app on my phone which has some really good activities which it encourages you to do a few times a week with the child.
She has done a few a week for a couple of months but I'm yet to see an improvement š«¤. Its things like both of you looking in a mirror and you do actions such as below a kiss or shake your head, smile and so on and encourage her to copy which she did surprisingly. Oh and Simon says, she really enjoys that. She's yet to repeat sounds though. One of the activities was to get to empty toilet rolls and you make one noise repeatedly for her to copy but she just did her own sounds!
Does Aria copy sounds? Like animal ones? Amelia used to do a dog woof but stopped. She imitates sneezing, coughing and snoring but that's it for coping sounds.
I wrote a reply to this but can not for the life of me find it š¬š God knows where I posted that.
Sophia has always been a bad sleeper. it's always broken sleep š¬. the girls seem to be on opposite ends with it aswell one sleep relatively well and wakes up. Or they are both up part of night and happens to be different parts of the night š¤£š¤£
Thats good. I've had mine like this about 3 months before that it was a bit cracked for 3 months I'd only had this a couple weeks before Sophia smashed it's screen slcoukdbt afford to replace it lol finally got replacement few days ago darent go anywhere with itš¤£š
oh that's good the apps sound good I'll have to have a look what I can find
maybe she's obtaining the understanding but not showing it yet. Wether she is or not it's brilliant your giving her that support the one on one time with you and your also being consistent so it's still a positive.
aww that's brilliant that's she's copying things like that tho and the fact she's making her own sounds shows she understands the task but is doing it her own way which is great.
Aria loves sounds she doesn't copy animal ones much she does make animal sounds tho. She copies the odd word and sometimes an action of tv or what her sister is doing but it's literally as and when she feels like it nothing consistent just yet
It is all about staying positive and consistency isn't it. I'm sorry if I've asked you this before but do you practice PECs with Aria?
I got the DLA form in the post the other day, I've attempted half of it, you were right there's so much to fill in!
I also had a call from the nursery today, they've managed to get in touch with the pediatrician and it looks like they are processing appointment's for referrals which were put through back in September so she said we are looking at May time for an appointment. At least now i have a time scale and can prepare.
The way your meant to do it with 2 people no. We and school do have the picture cards she doesn't seem too fussed still tho. occasionally I try at home but rarely two us here to do it properly
Its crazy how much there is on that DLA form so if you do need any input ill try my best to help
May seems far away it will soon fly by and be here before you know it. Its not so bad Shen you have timescales in mind and not just waiting indefinitely
Aria may be going her nan's for a few days so we haven't quite set that in place if she does I'll defo be taking Sophia a couple places. How about you?
I don't think Amelia will pick pecs up either to be honest. I've had it suggested to me by the nursery and someone else. I suppose i could give it a go no harm in trying.
Amelia has been so responsive today she's like a different child. She went and got her shoes and tried to put them on herself, then she pointed to her coat so i put it on her. Then she got my shoes and pointed to my coat then took my hand and took me to the front door. So i took her for a drive to McDonald's and she got so excited when we pulled into the drive thru bless her. When we got home she wanted to play in the garden and wanted my attention (which never happens) then i said do you want a shower and she went straight upstairs and got in no problems. It's so strange because most days she's in a world of her own and doesn't respond to anything.
Then about an hour ago she got upset over something so i sat next to her and she cuddled me (very rare) and when i got up for something she cried and looked directly at me patted the seat as if to say sit down which she's never done. Sorry for going on its just you're the only person who will understand how much these moments mean to us.
Did you ask someone to fill in the section of the dla form like a teacher or someone? Do you think it'll help towards her case?
Oh that will be nice for Aria and for you to spend some time with Sophia. Do they live far?
We are hoping to see my sister at some point and we also have family coming up from Cornwall for a few days. My auntie is really good with her she used to be a teacher's assistant and worked with children who needed additional support.
I always think it's worthwhile giving something a go because I tend to find things I think will work don't and things I don't think will work she takes to so well haha. At least you know you've tried if there isn't any interest you haven't lost anything.
Oh thats lovely she's trying to communicate with you and telling you she wanted to go out lol. It's amazing you've had that co-operation from her today at least you know she has this understanding.
Sounds wonderful I bet you really appreciate that time together.
Your not going on at all I thinks its so lovely to hear and I get it because these may be small things to other people but absolutely huge for a child&mum who's never had these experiences it's so much more precious. I actually have tears in my eyes for you to me there is nothing better than my girls wanting me and with Aria it very rarely happens. You have to appreciate and cling on to the times when it does happen.
Yes her teacher did it. it definitely helps as it helps to validate what your saying in regards to the extra support your daughter needs I think with DLA more you can provide in terms of 'evidence' is better
They live over 100 miles and neither myself or there dad drives so it makes me anxious but it's great for these to get some time with family. Her plan is to have aria a few days then swap over and have Sophia for few days.
Oh that sounds so lovely it's great for them to have that bond with other members of the family.
Oh bless you. It is lovely when your kids want your attention and even more so when it's children like Amelia and Aria. Other parents take it for granted, i get so annoyed when i hear parents telling their kids to be quiet or loose patience with them. Id give anything for Amelia to rabbit on! Even if it's about a load of rubbish! As I'm sure you would with Aria.
I will hand over the dla form to her teacher after half term, you're right it's worth getting their input to help her case.
Are you anxious because of the long journey or because they'll be away from you for a few days?
Yes it is. But it does drive me a bit loopy when both girls are squealing like banshees š¤£ I wish she would go on at me tho. Sophia has started telling stories. ( Some actual words and some that sounds like words but not sure what they are) she then sits there staring at me like go on then do what I asked and I'm like no clue what she's said. It's amazing though although makes me sad for aria.
I've had a lot of people tell me they didn't get it filled in so it's not a necessity but with Aria being so young we didn't have lots of evidence. We have quite a bit this time plus lots of bits from school her risk assessment and her goals that her teacher have set so I might not bother next time. I will see what I have when come to submit. I have to do her forms soon again as obviously we have diagnosis which triggers the change of circumstances. Her behaviour is getting worse though to initially it was just biting. Now nipping scratching to others and herself. Also kicking headbutting and smacking.
She's also having more meltdowns more so at home but we had a really bad day last week when she should have been in school. She spent just 12 minutes in school all she did was scream cry etc.
Plus her sleep is so bad at the moment so that's the night time care. It's all so difficult. I don't expect it to change the money side but hopefully we will be awarded a longer time now.
Not so much the journey but it's a long way away if one of them gets poorly or any problems. Also them bring away from me as I'm not use to a few hours without them never mind a few days lol. They have both had 1 week there before without us so I'm sure it will be fine and hopefully I will get some sleep as I feel so drained and exhausted.
Oh bless her, is there anything in particular that triggers her at home? It's so heartbreaking when you have no idea why they are so upset. How awful that she's getting more physical too, it's so frustrating for everyone involved as she's obviously trying to communicate but on the other hand is not nice being on the recieving end of it. You said she does it to herself too? I was just wondering if she scratches herself? Amelia has a thing about scratching her back until she draws blood, she's been doing it for a few years now and I've never made the connection...i just assumed she had dry skin but it's just get back l.
I wonder why she had a meltdown at school? Is she normally ok? Are the school good with her? This is main worry with amelia when she starts. It's going to be so stressful.
Oh bless Sophia and her stories! I bet it's lovely to listen to. I can completely understand that you feel sad for aria though. My friend came round with her 2 year old for Amelia's bday the other week and she was saying words and doing what kids do and everyone was laughing and giving her attention and poor Amelia was just sitting there looking. It was also strange because we never had those moments with Amelia so it was upsetting in both ways.
So the dla is only for a limited time? How often do you need to reapply?
Yes you need rest! Make sure you make time for yourself āŗļø
She's dislikes dressing having her hair brushed teeth brush having her coat on putting her shoes and socks on. She also likes her own space. But that day I can't pinpoint what triggered her we did our normal school day routine.
Yes so I'll cross her arms over her front to try and keep whoever she comes close to safe, in which case she then nips or scratches herself once she even bit herself.
Aria does scratch from dry skin but that's not when she's frustrated. It's hard to judge between the 2 sometimes
She didn't want to go in school that day. That's a tricky one. Her current one to one support are good but overall the school isn't great we have had lots of problems with the school and I don't think long term they can meet arias needs when she first started she was only allows 1hr a day in school as she was too much of a risk to herself. Spoke to both the head of the school and senco regarding these concerns and it's something I need to include on the ehcplan
It's so hard isn't it. I feel like it's impossible not to compare Aria against Sophia or other children and all the things she hasn't done yet that she should but additionally I'm happy for Sophia meeting these milestones. Its just knowing aria is going to have extra difficulties for the rest of her life. My heart breaks for her all its been is a battle so far for her.
DLA is for a limited time depending on individual circumstances. From what I understand younger ones who don't have diagnosis get shorter awards especially under 5 as thats what age mobility comes into it.
Arias first award was 2 years Dec 2020 to December 2022. Obviously if change of circumstances like for us then it's earlier. I've seen people awarded till they are 16 and some people 5 years so it is 100% based on circumstances.
How is the DLA form going?
I rarely get even 2 minutes to myself when I have both girls at home lol š¤£š¤£
I'm sure i replied to you a few days ago but i can't seem to find it?! So sorry if you get 2 š
How was the girls over half term? Did they have fun with their nan? More importantly, did you get any rest?!
How awful for you to witness her biting herself. Do you recieve any support in that respect? Have you or do you contact autism uk? I've been thinking of contacting them but not sure what they can do for me really. Do you automatically recieve more support once you get a diagnosis?
Will you look into other schools? This is my main worry that Amelia won't get the support she needs. Apparently her ehcplan won't be ready for when she starts school in September. This concerns me that she won't get the support she needs straight away. I spoke to the schools senco at the open day and when i told her about my concerns with Amelia having suspected asd and my anxiety about her starting school, she asked if i had looked into sending her to a special needs school. This really upset me and i came out of the school in tears saying to my partner my daughter isn't going to a special needs school! I agree she will have additional needs but surely she's ok to go to a mainstream school? I just want what's best for her. Do you think i overreacted?
I completely understand that your heart breaks for aria. It affects us more than it does them as they don't know any different. I look at Amelia everyday and i could just cry for her. Obviously i wouldn't change her for the world but i do worry about her future. I just hope the world is kind to her.
I've completed most of the form, i gave it to Amelias teacher on Wednesday to fill out. Did you add any information at the end where it gives you the option? I feel i have covered everything the best i could, I've even repeated myself a few times. I just don't want to miss the chance to add something vital that could help towards her case. I didn't realise it could only be for a limited time, thanks for clearing that up.
I managed to get Amelia in the garden today. I put her wellies on and her coat and said come on let's go jump in the puddles! At first she was reluctant but after a while she loved it. I've noticed that she's attempting to communicate more these past few days. She's giving more eye contact and even said a few words yesterday. She's pointing more, gesturing and using facial expressions. I'm not getting my hopes up but I'd like to believe that she making some progress? Although she has done this before then regressed.
I'm sure i replied to you a few days ago but i can't seem to find it?! So sorry if you get 2 š
that's happened to me before nowš¬š
Aria has been ok with her nan mostly she's had a few tantrums there over different things but she's seen family and her nan's took her out so sounds like they've had fun overall. Sophia isn't going there till tomorrow she's gunna swap them over. I've slept more during the night although the more sleep I get the more I seem to want. I had a list of jobs I should have caught up on whilst only having one of girls here and honestly I haven't done hardly anything š¬š¤£
No support for her biting. I have contacted the autism information and advice service regarding some courses/ training they offer to understand Autism better. I've done a sen parenting course (triple p's it's called) can't say it's helped much yet. they talk about behaviour diary and reward charts which wouldn't work for aria yet as she doesn't have enough understanding. There was a few useful bits but mostly it be good when she's older. As for support honestly we haven't had any support neither before diagnosis and not since either. One of the mum's at the school my daughter goes to said a couple months after he boys diagnosis she got contacted from a lady called Jacquie who is her 'autism support worker" she doesn't visit them or anything purely there if you have any questions you can email and that's the support that's it. On arias diagnosis letter it says 'family already contacted and getting support from all relevant services available'
Yes we will be and then we have an uphill battle to get her to the one we want her at. š
Aria school had to give her more support from day one even without the ehcplan she has 1-1 support all day everyday. She literally ran across the room would go to walk straight off the top of the steps outside wasn't really aware of herself she was constant running into people tripping over and when distressed she flops to the floor she has had a couple bangs to the head in school because of this
The ehcplan is a long process. The initial process is 6 weeks you get a decision it's another 20 weeks to the final stage. There is a website called sendiass they have a team of people who can advise you regarding the ehcplan we have recently found out arias been accepted at the initial stage and now have to give our input problem with this is obviously aria doesn't talk so I have to guess everything and answer from her point of view. I will be contacting sendiass soon myself.
I don't think you over reacted. Especially as you wasnt considering or expecting her to say that. I don't think she will have meant to upset you but it's a shock. I cried when aria got her diagnosis even though I was expecting them to say she has autism I wasn't expecting it the day it happened. Even when you are prepared for something hearing or seeing the words it hits you.
As for her going to a specialist school it's not a bad thing if she does or doesn't go to one it's what's best for her at the time. It's the hardest decision you will have to make but you will have to judge it on her as she grows and make the decision based on what will best support her. Up until a couple weeks ago I was adamant aria was fine in main stream but the day with the tantrum they couldn't keep her in school I had to take a step back and access the full situation.
I didn't want her to go to a specialist school. But after I properly thought about it long term it's what she needs I think she will struggle in mainstream as she gets older and honestly don't think they can cope with her needs long term
The way my area works you can't even view the specialist schools until you have a draft ehcplan as they need to know if they can meet your child's needs. The idea of a special school initially made me really sad. But it's not as bad as I thought either they have schools for children with autism or other behaviours'it's just a case of identifying her behaviour and choosing the best place for her.
I just think arias entire life is gunna be a battle it makes me really sad. Her behaviours right now I don't know how to help her some days I just feel like a complete failure as a mum. š
No I didn't initially and sorry I didn't tell you that when I suggested you apply. With regards to the end part I didn't add any additional information only for questions when I ran out of space on the page itself. Some q's do overlap a bit so unfortunately you are going to repeat with some. Plus with something like this form I think it's so difficult to actually put into words
It's definitely good that she is doing these things and I would say yes progress but try and enjoy it as much as you can if it stays brilliant fantastic and if she does regress again you know shes done it before and theres always chance she will do it again.
But right now for this precious moment enjoy it whilst you can!, she's trying to communicate giving you eye contact and those in itself are amazing even if just for a few days.
It's funny you say about her jumping up and down in the puddles. We are just watching peppa and they are jumping in puddles haha.
Please try not to feel like you're a failure as a mum! I know we've only been speaking for a few weeks but i get the impression that you love both of your girls very much and will do anything to make them happy. It's hard because you wasn't trained or born knowing what to do. It's hard enough having a child, it's all new and you don't know what the hell your doing and then you have the autism on top too! You can never tell a child you love them too much š
I'm glad aria had a nice time at her nan's. It's good you have that option and a chance to have a bit of a rest, it's even more important when you have a child with additional needs, it can be exhausting both physically and emotionally and i don't think a lot of people realise that. I know what you mean about the sleep! I find if i get a lay in im more tired! Ah don't worry about those jobs, they'll get done eventually lol
I don't think Amelia would have the understanding for a reward chat either, that's why I'm a bit reluctant to do pecs with her. Amelia isn't aware of her surroundings or herself either, she is constantly tripping over, bumping into things or people. She also throws herself on the floor. I was wondering if she had dyspraxia but it might be another symptom of autism if you say aria is like it too.
You're right about what you said regarding the school situation. I think i was still in denial when the senco said that to me, i just want prepared to hear that said to me about my daughter especially by a stranger. It is so upsetting when you hear others say what you are secretly thinking - it does make it more real. People need to be more mindful i think of our feelings. I'm gonna play it by ear, if Amelia struggles in main stream school then i will look into other options. It's about her happiness at the end of the day. I think I'll cry too when i hear the diagnosis. I'll be half relieved and half heartbroken.
I might look into that course, i didn't know there was anything like that available. Did you have to attend somewhere or was it online?
I didn't know so much was involved regarding the ehcplan etc. But i guess it makes sense do that can identity the child's Mrs and go from there. I didn't know what sendiass was either so thanks for that. That's good news that aria had been accepted, yes it will be hard answering for her but your her mum and you know her the best and have her best interests at heart.
So you didn't get a call from a autism social worker then? How comes it says that on your firm but you don't get any support?
I think I'll leave the end part of the dla form then. Her teacher has filled out her bit. She said that's it's very rare that a child like Amelia would get refused for the claim.
I am enjoying every moment of Amelia, good and bad to be honest. All i can do is continue to encourage her and give her all the attention she needs. It took us 8 years to fall pregnant with her so in my eyes she's a miracle āŗļø
Ah yes pepper pig! Amelia doesnt watch that now but i guess i have it all to come again with Emily š it's masha and the bear or grizzy and the lemmings at the minute, oh and toy story!
It does make you sad knowing they will find it difficult to navigate through life. But both our girls are so lucky to have loving families who will support them at every milestone. I hope we remain in contact too so that we have that extra support. Where abouts do you live if you don't mind me asking?
HelloI havent had time to read all comments so sorry if i repeat!.
My son was flagged up with speech problems early on in school. He was only non verbal there which made things difficult to begin with.
Anyway we were put in contact with CYPS who diagnosed him as ASD, i prefer neurodiverse. Unfortunately due to lack of funding you don't get a huge amount of support. You should have a SENCO at your school who you will speak with often, its their job to see your daughters needs are met at school. Also SENDIASS are a great help with supporting you and telling you what help you need and how to get it. Its taken me a long time to find all this out!. I hope this helps you and i hope your daughter is able to express her needs as she gets older. I've spent years giving my son the confidence to talk out his worries (not every child is able too as needs vary hugely) and it has helped him (he's 11 now) cope a little better.
Hello sorry I missed your reply buried in our thread. I'm not surprised you haven't read it allš¤£š
I'm sorry to hear your son had speech problems did he have any speech and language therapy?
Is CYPS an extension of cahms? I've heard of Helios and cauldwell children. (other external sources that give diagnosis)
We do speak to senco. Not all that often though we don't have a direct way to speak to her she doesn't her own line in school or her own email so I have to contact the schools messaging service for them to ask her a question or if I need her to contact me. We have 2 meeting a year with her which was over the phone but we actually have one in school next week. I don't find her that helpful if I'm honest and I'm not the first parent who's said the same. She's helped us a bit but some parents I know found her no help what so ever and went above her and spoke to the head teacher and or sendiass.
Sendiass has recently been mentioned to me when I mentioned ehcplan so I'm looking at contacting them soon in regards to my daughter's ehcp we should have a decision within the next week or so and if accepted I have to do my initial part of it and I am clueless š. Do you have more information in regards to the types of things sendiass can help with? Like attendance for example? As school keep sending her home for being 'ill'
I'm so glad your hardwork has paid off with your boy. Is there any things you've tried you found worked for him better than others when it comes to the activities you do with him?
I think it's wonderful you've spent the time with him to do activities and it's a great way to build memories and have that time with him š
Excuse my ignorance but what is CYPS and SENDIASS? I know what a SENCO is and have already spoken to her about Amelia for when she starts school in September. Was your son totally non verbal when he started school? When did he begin to start taking? Glad to hear your son is coping better. Did he have speech therapy?
Thank you. it's just something that eats me up at the moment. I don't know how to fix it but I know I need to find a way.
me too although she had a few meltdowns there too. It took me long enough to agree haha. With all the covid and restrictions there nan didn't see them for a while so I didn't want to chuck them in at deep end. But we all spent a few days there last August so it's not a much of a shock/difference to them.
Sleep is back to front. it's crazy how it works.
I look at it that anything is worth a try but not everything will work. It's hard to know what is caused by the autism and what is a different learning disability. It's bad enough for them to be diagnosed with 1 disability aswell nevermind more than 1.
Yes it is I just think it's normal to react how you did because you care about your daughter but you will adjust as you go and then you make the decision as hard as they are. There is so many conflicting feelings with every single thing that happens I think choosing school, diagnosis etc.
Not sure if you mean the stepping stones course or the other ones that AIAS do. Stepping stones was on an app called teams. The Aias ones there's 4 modules understanding autism is the first and it will be online not sure what they use just yet as unfortunately they didn't have availability till April they will send me information closer to time.
Yes Ehcplan is long winded which is great in a sense to make sure it's right for a child it's just a nightmare if it gets refused or have to appeal if information is wrong. It needs to cater to the individual child which can be a battle getting what they need.
No contact from anyone yet. I found the AIAS website ( autism information and advice service) I contacted them myself to ask regarding the courses they contacted me back to fill in a referal form and with dates for the courses. A mum from my daughter school told me that she has an autism support worker so we should get one too but no contact from anyone still. Best part is the autism support worker doesnt come to visit or anything you can email/call if you have any questions or queries that's it. The form is just ridiculous it's absolutely shocking most of its not what was advised and what they did advise hasn't even been put on there it's just shocking
I've been told there is an early help disabilities team but not 100% sure how you access that apparently you can apply yourself but I've not looked into that if I'm honest. Having to do another referal put me off. We had a early help worker before not specifically a disability worker and honestly she was so not helpful. Feels like a waste of time. It could be the most amazing supportive thing in the world but I've been put off a bit tbh
The more information you know about services available the better in my opinion.
There's also a site called parent carer forum. Im not sure what area your from but as far as in aware they have one for each area. I could be wrong tho.
Oh brill news that they've sorted for you. š¤š¤ Hopefully she's right you can appeal the decision if they do refuse but hopefully that won't be necessary
She definitely is a miracle even more so for you after trying all that time ā„ļø
Oh these love Masha and grizzly too aria fave at the moment is miraculous ladybug and hotel Transylvania lol!
Oh 100% support is everything I wish I had more support for me at times. I feel like most people I know don't understand my life and how difficult it is or understand arias behaviour it's heartbreaking. Rotherham how about you? Are you on Facebook āŗļø
I understand, i feel i haven't done enough for Amelia and also guilty that i didn't see her symptoms sooner. I also feel bad that i don't know what to do for my own daughter. So i totally get why you feel that way. But we are only human at the end of the day āŗļø
Oh i don't know which course, i think you mentioned one in your last comment? I need to see what is available in my area really and go from there. I will look at the parent carer forum, that could be helpful if there's one in my area.
I can see how your experience can put you off of referring aria for other services. It's so bad that people aren't helpful and that others get extra support and you don't. I really think it's down to luck.
I sent the dla form off today so fingers crossed š¤ again thank you, i would never of know that Amelia could be entitled to it if it weren't for you š
Amelia likes miraculous ladybug too! She also likes watching videos of other children playing with toys. Also sensory videos, there's one where a car runs it's wheel over different colourful objects, very strange but she likes it!
I totally understand what you mean about people not understanding behaviour. We took the girls to my friends little girls birthday party on Sunday in a church hall. Amelia was fine throughout the car journey (which took us an hour and a half) and walked up to the church lovely but as soon as we entered the hall the music was loud and there was loads of kids running about screaming, her face changed. She got so upset it was heartbreaking, she was desperately trying to escape out of the doors. I got so chocked up i had to fight back the tears. At one point she just stood in the middle of the hall looking at the other kids playing while sobbing and for the first time i saw it, I'm sorry for saying this, but she looked like there was something wrong with her. It hit me like a ton of bricks and it was awful. If i was a parent there i would of definitely have said, it looks like there's something wrong with that little girl. I think my partner saw it too because he said if anyone looks at her funny or says anything I'll swing for them. A few people that we knew there kept asking if she was ok and we just kept saying she's a little overwhelmed, but the kids were looking at her funny and it was awful. Thankfully she began to settle in right before we was about to leave, after wanting her coat back on š, and joined in with the other kids which was so lovely to see. The hall started to empty out a bit and the music was turned down which i think helped.
Oh ok, that's North isn't it? I'm from Essex. I used to be on Facebook but came off it 2 years ago, it got on my nerves lol. I'm thinking about going back on it incase theres any support groups on there that i could join. Shame we're not closer we could of met up somewhere.
yes hopefully there's a parent carers forum in your area
the early help worker we had Rebecca said aria needs aren't bad enough to warrant help from the disabilities team so it's not an option anyway. I didn't mean it that way maybe I worded it wrong. I just didn't think it would have achieved anything.antthinf that aria needs I would definitely apply for even though majority is a pain in the bum and a massive battle lol. she's closed our case now anyway as nothing more she can do for us apparently.
Aww brill. hopefully good news but if they do refuse it appeal it I've heard people are successful with appeals too so worth doing. Really hope it's good news for you
It's great though different way for her to learn can't be a bad thing. Especially the one with different colours
Aww no bless her and you that sounds heart breaking. Well done to you for sticking it out with her till the end I'm glad she started to join in even if it was at the end. The parent carer forum in my area have events for children with Sen like aria so in theory people understand. Although unfortunately for us we very rarely get to go as it's not safe for me to take both girls anywhere alone they run off in opposite directions. Aria doesn't respond to her name for the vast majority and on the odd occasion she does look she certainly doesn't stop what she's doing lol
What an awful experience for you guys as parents too. But at the time you just have to try and zone out and do what's best for your child. How easy it is to type that but experience and actually doing it is so much harder. What is amazing and you should totally give yourself a pat on the back is fact your still trying because worst thing you can do is lock yourself away.
We don't do as much as I'd like but I take these out as much as I possibly can when safe
Its so frustrating the way people are. every time we go places and aria has a meltdown or tries to take stuff from others or people being polite/friendly try talk to her I have to justify her behaviour we get dirty looks.
Tbf we never use to talk to strangers but people in shop other day was being friendly she was getting upset as lady had to take her items to scan so we could pay but she didn't want to let them go and started getting really upset this then meant we held up the queue. Nobody did anything wrong they was all really nice I don't know if that situation made things better or worse because I still felt like I had to justify her behaviour yo don't want to tell strangers your life story but then I don't want people thinking I'm rude or she's being intentionally rude when people are genuinely trying to reassure her or be nice š
We don't really get invited anywhere I don't know if people have decided they don't want us there because of how aria is. Before we had her we was pretty isolated anyway but feels more so now.
yes north. we have family who live in hackney but very rarely go as we don't drive ourselves. definitely a shame. maybe one day it will be a possibility.
Aww thank you, i too am so glad we saw it through. I think if it was closer to home my partner would have said right that's enough im taking her home. It's just a shame for Emily, like in the future im afraid she'll miss out on things like that because we are so concerned about how Amelia will behave or if she gets upset and have to leave. I think we need to continue to be persistent in hopes that she will get used to it eventually.
Most days i feel like locking myself away! I just don't have the energy to face the world. On the days i feel strong i take advantage and make a day of it. It's definitely easier when you have someone to help you get through the day. I just feel bad that Amelia is missing out because of how i feel. She doesn't know any different bless her.
I know exactly what you mean about explaining/justifying behaviour to people. I used to get so embarrassed and make excuses like oh shes tired, and like you i didn't want to go into details when it's none of their business. Even now when people are genuinely being nice or showing their concern i dont want them thinking Amelia is different or that she should be getting any extra attention because of her behaviour.
Tbh what happened in the shop could of happend with any kid, so i shouldn't think the people in the queue took any notice! Their condition is constantly at the back of your mind the whole time isn't it.
I got a generic letter through the post last week from our local family services asking if 'your child' was school ready. It has a list on the back of developmental milestones and if i had any concerns to call them. Most of the list is ticked off apart from the communication and toilet trained part. So i called them on Friday to ask what support i could get and they said they'd call me back, which they haven't yet. I'll call them tomorrow actually to see what's going on. So this could be a good thing which sign posts me to more support. I'll let you know how i get on āŗļø
I'm sure that's not the case about not being invited anywhere because of arias behaviour. It's hard for people to understand and they probably assume that you find it difficult in those situations so are just thinking of you. People need to be more open and talk more so that they can begin to understand what life is like living with a child who has asd.
I have requested membership with the Essex parent and carers family forum, just waiting to hear back to see if I've been excepted. Hopefully they have meet ups with other sen children locally as I'd love to take Amelia. Ah yes, i can see how it might be a little tricky taking both girls! š especially as aria doesn't always respond to her name. You can't relax can you because you're constantly looking out for them both. It's it not possible for you and your partner to go to one together?
Amelia sat next to Emily and stroked her head the other day! It was such a sweet moment and straight away i thought i must remember to tell Teagan! āŗļø
Yes its not easy. I worry about what Sophia will miss out on too but I think we need to just take it one step at a time and hope for best. In all honesty I don't think she will ever get use to it fully.
it's so draining especially when we are restricted to the house a lot. You just have to do it however you can so 1 day you get loads done and it's amazing next day even if it's something small you get done just staying on top of normal bits getting kids food and dressed etc is also amazing too. You can only do so much we all need a break.
We went away to Butlins last week which was sort of nice. Very busy kids loved it.
I am hoping I will just get to the point where I don't care and quick as I hate how it makes me feel at the moment.
It's very rare I take her to shop and can't say I particularly take notice of other people's kids in shops lol so I'm glad you've said that's normal behaviour. I literally go in grab what I need and leave lol! Although I must say it's amazing albeit expensive when Ive taken her in shop and shes picker herself a few bits as she's never done it before so cute and lovely she's picked herself only took her till she's 4 1/2 haha
Did they call you back to see if you can get any support? Hopefully they offered you something
Maybe your right. To be honest though it's probably a blessing they don't invite us now as she can't miss what she never had and it would be so much worse for her to get use to having people there and them then being gone.
Aww that's wonderful. Did you find out yet? Really hope you have as even a bit of support is great. Ours in our area have lots of different things so that's good. Not really with my partner he gets Thursday off from work and then the other days his shifts/times change some days he can work 8am-9pm so he's not there whilst kids are awake. Sometimes it's possible to do stuff with us all together
Last week was his first week off since last August his boss kept refusing his time off.
Aww that's so nice it's wonderful to hear that. Did you manage to get a picture? Or did it happen to quickly. I'm so glad youve got that memory.
Hope you've had a lovely week not spoke to you in what feels like ages!
I hope everything is ok, not heard from you in a while. I miss our chats but i understand if you are busy.
I just wanted to update you on Amelia. She got accepted for DLA which is all thanks to you and your help.š
She also has a pediatrician appointment and a speech and language appointment next week. She also go accepted in the primary school i selected and the teacher and senco are going to arrange meeting with me soon.
So it looks like I never replied to this message which I'm sure I did lol!
Sorry its been a while my youngest smashed my old phone and I couldn't for the life of me remember what forum I spoke to you on till I got an email today to said you'd posted a message. I cant seem to find that message though š
But I'll reply to the other message from 2 months ago! Omg as if it's 2 months
We had an alright time at butlins. The kids enjoyed it was hardworking at times with meltdowns and different environment. The hardest was trying to get both girls to understand when it comes to things like rides they need to take turns and get off queue etc get back on both we're so upset getting off. The dining hall was a nightmare they didn't want us to take pram in caused a meltdown one morning manager came over and let us take pram in, but was already too late by this point.
How did your holiday go?
Did you go to the soft play centre? I hope it went OK if you did. I think how id approach it with Aria in that situation is take her and see how it goes. If she doesn't enjoy ut no excuse necessary id tell the other parents its too much for her and go. You know your girl better than me and if she really won't like it, it's not worth the upset. Just sad for them to miss out on everything isn't it. As parents you have to accept some situations they aren't going to do well with and some experiences aren't for them.
I do think from a mum perspective you definitely need to get out there and try and speak to people I've been struggling last couple of months so I've shut myself off from people and it really doesn't help. Everybody handles things different though don't they.
Yes I think sometimes just doing the bare minimum has to be enough.
It's so bloody difficult. I don't want autism to define her but how does it not?
Definitely not worth the risk with roads. How is she doing now? Aria is getting to the point she refuses to walk wants pram all time but she's getting too big. Also the safety side of it I can see us having to pay out for a disability pram.
Oh no. Did they ever call you back and sort out? Have you sorted things with the carers forum. I hope you have and found some people local to you to speak too/meet with.
Yes he's entitled. But his boss is also an entitled asshole. Excuse my English. We've had lots of problems with his boss he's horrible and doesn't like my partner other members of staff have complained he's a bully too but no one takes it further it's so frustrating
How's joint baths going? Or did you knock that on the head lol? Its amazing but also fleeting these words. How's How's words going now? Its amazing when you get the moments of interaction between them so precious
Unfortunately didn't do much over Easter we was mostly poorly. Hopefully you had nice easter!
In response to the message I got today.
I'm not feeling brilliant today the worst headache! I miss our chats too sorry I've been distant with everyone just feeling drained as hell its hard with little sleep
I'm so glad you got dla sorted for her. Hopefully the extra money will go well to help her support. Have you taken your letter into her nursery? If it works rhe same as ours they can use it to get extra funding for her in school.
Aww Brillant news. I'm I'm glad progress for you all in the right direct. Please let me know how it all goes for you.
We still can't access speech and language therapy they will decide when Aria is 'development ready' my youngest has also been referred to speech and language now too. Health visitor says she's development delayed and I just feel like I'm failing both these girls massively sucks.
That's ok don't worry! I've been hesitant in messaging you for a while as i didn't want to get on your nerves! I know having to little ones is hard work and I didn't want to come across as a pain š
I'm sorry that you weren't feeling great š£ headaches are the worst. Hope you're feeling a little better now. Please don't apologise š
Sorry to hear that you where all poorly over Easter š£ did you all have colds? Or Easter was nice thanks, we had family stay over for a week and we went to a few places locally.
Or holiday was stressful too. I'm going to wait until they're a bit older before we go again! The girls had fun in the cabin and we took them swimming but we went for a walk one night with out her buggy and Amelia had a meltdown throwing herself on the floor. The only way we could get her to walk is by distracting her with looking for pinecones and jumping over drains which she loved. After that she was fine bless her and walked really well. The journey was about 3 and a half hours in the car, Amelia was good as gold but Emily decided to scream her head off down the motorway and there was no where to stop! It was a nightmare. I got some lovely photos of them both though, Amelia's being really affectionate lately which is nice š
Amelia had her pediatric appointment today, they seem to think that her developmental delays are due to her hypermobility and that she has traits of autism. We are now on a waiting list for a pre-school autism assessment. She gave me a site that offers support and advice in my local area which is helpful. So at least i have that in the mean time.
Her speech and language session is on Thursday. I find it unbelievable that aria isn't getting S&L. What does development ready mean? Does your youngest have speech issue too? Don't feel like you've failed them because you haven't. It's completely out of your control and you're doing the right thing by getting them the support they need š you're so knowledgeable and seem to be on the ball when it comes to what you need to do for your girls.
Joint baths are still going good they both really enjoy it. My youngest is doing really well thanks, she's attempting to crawl and sits up from a laying down position now so ever had to let the cot. She's so alert and just wants to get going! I didn't have any of this with Amelia so it's all new to us! Amelia crawled when she was 14 months and walked at 2.
She is doing really well without her buggy if we go out for the day, she doesn't seem to be so reliant on it if we take it along with us, although If it's not there she seems to have more meltdowns, i think she sees it as her safe place of she gets overwhelmed. Mind you i didn't take it today and she was good as gold. She listened to every instruction and responded to her name. She was even waving at people as she walked past them which is new!
Amelias progress in saying more words has stopped unfortunately, we are back to just no and oh no. She is also having more meltdowns, especially if there is a change to her routine. She is so heavy so when she throws herself to the floor i can't pick her up! People walk by saying oh bless her and i feel like crying. She had one as she came out of nursery last week, we was walking to her buggy and usually she runs straight to it in the bike shed and waits for me but for some reason she wanted to run with the crowd and got upset when i called her name. Luckily one of her teachers was close by and came over to help me, all the other parents and children (the nursery is apart of the school where she'll be starting next year and they all come out of the same gate) was trying to get past and staring at us. It was awful.
I didn't take her to the soft play in the end. They all seem to have formed a bond and meet up a lot, i think I'm the only one who hasn't gone anywhere with them. To be honest not all the kids will be going to the same school anyway so I'll start a fresh when she starts school. I'm not sure if any of them are aware of amelias condition so it puts me off.
I haven't taken the dla letter to the nursery, maybe i should ask them if i should. Does it go on her ehcp then?
I have someone from family services coming round at the end of May for a home visit to see how they can help get Amelia school ready. Hopefully they'll give me advice on toilet training! I'm so anxious about it.
You won't get on my neveres I just don't always see your replies haha. It's nice having someone to talk to
Been a good few days I ache as been trying to tidy up the garden so the girls can go out and play we've ordered a trampoline which is due next week
Mixture of things girls had diarrhea and sickness one week and then following week cough/ cold and I head such bad headaches and ear infection š¬
Awe that's nice hope you enjoyed the time with your family.
We have a 2 week holiday to spain booked for later on in the year I'm so anxious. Oh god it's horrendous isn't it like you think they have to learn to manage without the buggy this one time will be OK. Then all hell breaks loose and you think why did I not just bring the buggy. So sorry it didn't go well for you. We are just looking at pricing up the disability prams but they so expensive aria struggles with walking any distance safely tho. Sophia isn't the best on her feet either she goes too fast for her little legs and falls over. I'm taking her on short walks without the pushchair whilst aria is in school tho so fingers crossed it helps her
I'm glad they did enjoy some of the holiday tho. I think we may have to just accept holidays may not necessarily be enjoyable for us adults and appreciate the kids enjoying it instead š¬
I'm so glad that you are getting some lovely photos of the together those precious memorise are everything aren't they.
That's good news? Well in the process of going forward it is. When we got Arias diagnosis it still hurt to hear the words and I still cried. Oh brilliant I'm glad you've got something local to you these outside people are everything too especially for us parents just so we know we aren't alone. How are you feeling about it all? Its a pretty big think when someone says this is what we think are the issues. Virtual hug!
You'll have to let me know how she got on I'm relieved that it works different there for you with s&l. Your guess is as good as mine. This is coming from a service that no longer sees aria so how can they decide anyway its beyond me. What gets me is the constant threats to remove her from the waiting list. If you don't attend an online training session. Then you have to call to give them the code from the online training its just silly. I phoned and the lady who I got through to didn't have a clue. I was on the verge of having a panic attack when she phoned me back and said yes we do need to take this code from you to verify your attendance I'm sorry this process is new. Like ye OK thats understandable but you shouldn't make threats to remove a child who desperately needs a service from a waiting list they've been on for 2 1/2yrs when they can't even tell there own team whats going on.
Yes she does unfortunately she's very limited too maybe around 10 words she should be able to 3/4 words together by now qnd follow simple instructions pass me this etc and she cant I'm just at a loss. Especially when other people say things like I'd get her access to more services maybe the mean well but it hurts like they think I'm not doing my best.
Aria has really bad dry skin. Joint baths are going well in the sense of when they both I together they stay in longer but that's where it ends they fight over every bath toy haha! It's crazy how different 2 children from the same family are but absolutely wonderful. She's keeping you on your toes then.
See this is where its a hard call to make having the safe space or not but you do need them to be able to walk and not reliant on the buggy it's a no win situation. Especially as she's having good days without it younjust can't guess when the bad days will be. It'd brilliant that your trying to get her use to being without it all the time and amazing she's follies instructions!! š„°
Aww no they do regress though sometimes if they have autism so its normal doesn't make it any easier and she has said the words before so there's always hope ā¤
We will have to get use to this thicker skin thing and not worry what others think just worry on what our babies need and do the best we can based on that. I think it's good that she's noticing the crowd and wanting to follow though she's showing the interest and wanting to know what's happening so thats good. The floor flops as I call then are the worst because you don't want them thrashing against it and hurt themselves but don't want to make it worse by picking them up. So much harder when people stare I'm sorry your experiencing these incidents. I like to think maybe people are being sympathetic I know since I had aria when I see something happen I am so much more sympathetic to others but i still occasionally find myself staring at q situation. A man had collapsed in town last week and I was like oh no I hope he's OK and literally looking straight at this man OK a stretcher and I had to be like stop woman you wouldn't like it if it was the other way round. Its a normal reaction though is what I'm trying to say.
Yes I wouldn't worry too much just yet you may find she doesn't enjoy these experiences or she might but not want to play with others it's a case of wait and aee how it goes and what's best for her. I know with Aria I think oh she will love this and she hates it or vice versa. We went to a party at someone's house and I was so anxious but it went amazingly well they both loved it and no meltdowns until it was time to leave by this point it was like 7.30 on a school night so both tired aswell I was so impressed with how it went to be fair.
I think it's hard when all these parents have normal kids and have a bond and your coming in later on with a child who's not quite the same I hope you find someone who's good for you and understands all you can do is explain yourself if you feel the need to but if people don't get it that's OK too before Aria I wouldn't have understood it still hurts but there's so little understanding out there.
I would just ask if they need a copy of it and take it from there. My understanding with the ehcp is it will state Arias diagnosis but not receiving dla. Before diagnosis the notes said awaiting diagnosis. We haven't haven't our draft just yet. It's due any day now though fingers crossed.
Yes toilet training hasn't gone well for us aria has taking a liking to kicking the potty so unfortunately I can't give any good advice. Let me know if they do recommend anything useful tho I hope they do
We had a letter for Arias first school trip this week and her teacher requesting either myself or her dad go. Awful decision either way I need to leave one child behind to go or go crazy at Aria going without me if she's allowed to still go. Dreading the experience of going too like if she has a meltdown informt of her teachers/other parents and they just stare at you judging how your dealing with it. Terrifies me xx
Thank you for the virtual hug š it is hard heading people talk about your childs possible conditions, especially if they point out something you didn't notice and then feel angry at yourself for not noticing. I even said to the ped that now when i look back at when Amelia was younger i can see things which were obviously not right but at the time i didn't realise. She was so nice and said that i shouldn't blame myself and that all children are different, in fact many of Amelia's developmental delays are common in children without a condition. She said that you can get children who have no issues who grow up to have social insecurities/mental health issues and then children who are diagnosed with a condition who grow up to live happy independent lives. This made me feel a little better.
I can imagine that disability prams are expensive. Is aria getting too big for her one then?
Oh Spain how lovely! Where abouts are you going? Yes you're absolutely right that its all about the children, us adults won't be able to enjoy it anymore lol. I can completely understand why your anxious but i think it's so brave of you to book it, i don't think i could do it. Have the girls been on a plane before?
A trampoline sounds fun! It's really good exercise and it might help to strengthen Sophias little legs bless her. Sorry weeks is a really good idea, she'll get there šI bet you do ache from tiding the garden! I ache from doing most things these days! We have so much to do in this house still, i just can't find the energy! It's been nearly 10 months since we've moved in and we haven't even redecorated yet!
Speech and language went well, Amelia responded to her name and engaged in the activities they set out for her. They have referred her to complex s&l which is a more intense set of sessions which could last a while. They also want to do a home visit and a nursery visit too. I'm so baffled as to why aria isn't getting s&l. I've never heard of having to do an online course to access a service before that's ridiculous! Can't you write to your local mp about it? It's so unfair how children are offered different services depending on where they live, it should be a nation wide service so every child has the opportunity to access the same standard of service.
Have you heard of a section 23? The s&l and nursery mentioned it to me and explained what it was but i didn't get it and felt stupid asking š as far as I'm aware the local authorities now have Amelia on their radar and that the school can apply for extra funding? Oh i gave the nursery the dla form, you were right they can receive money.
Oh yes toilet training, i mentioned this to the s&l ladies and they have referred Amelia to a continents specialist, hopefully i will now get the support i need to get Amelia out of nappies! Apparently they can also prescribe nappies etc. Has this been offered to you?
Oh no that poor man! You can't help but look though! I'm exactly the same! Although like you since having children i am so much more sympathetic to other parents and children. We took the girls to a classic car show yesterday and there was stools, food vans etc plus a live band. We grabbed some chips and because it was a sunny day we sat on the grass to eat them, un- beknowing to us the live band was about to start up right next to us! As soon as they started to play i looked straight at Amelia waiting for a reaction but she was fine! In fact she got up and started dancing bless her! But next to us was a woman with a young baby and a 4 year old boy who burst out crying and she put a pair of noise cancelling headphones on him. I really didn't mean to stare but i did for some reason. I think it's because i understood and just felt so sorry for him. She was struggling with calming him down and seeing to the baby at the same time, i think the dad was in the queue for food. I really wanted to say give me the baby while you calm him down but i don't know how she would have felt about it. I think if it was me id be grateful for the help and understanding. It's difficult isn't it.
Oh what a pickle for you about the school trip, i wish i lived closer I'd look after Sophia for you! Does aria have a support teacher at school? Surely they should be equipped for these situations? You don't want her missing out that's not fair but i can understand why you feel anxious about her going. I wish i had some advice for you.
I'm so glad the girls enjoyed the house party š that's great to hear and i am smiling as i type this because i know exactly what that means to you. Parents of non sen children take those moments for granted where for us it's amazing xx
So hard. You can't blame yourself but I always do anyway it's hard not to you feel like you should notice things. I'm glad the person you spoke to was nice about it and told you not to blame yourself I wish it was that easy.
It's crazy how much things can differ in children. Some parents refuse to go down the diagnosis route too that's one I've never understood. Although Aria having diagnosis hasn't changed anything so far so maybe it was pointless.
Our health visitor has put Sophia referral in today we don't know if there is anything because some of it could be copying Arias behaviour but its so hard to tell especially as some of her behaviour like sleep and her 'separation anxiety' plus few other little things are different to how aria was. Aria was always good with sleep and she didn't mind being away from me whilst I went to the toilet or into a room to cook etc where as Sophia screams blue murder. She climbed the cot and the safety gate yesterday I got an awful fright.
Not unmanageable big just yet but she can easily touch the floor with her feet and I like to have my options available. Senco in school mentioned being able to get a disability pram from a charity she's not sure but says it's may be possible so working finding out the options for when she is too big.
Paguera it's called. We usually do turkey or Tunisia but other half wanted shortest flight possible haha. Aria had but Sophia was born a few weeks before covid so she hasn't. We have the fun of trying to get her passport they have delays.
The trampoline arrived with parts missing so not so good haha. Hopefully get a full refund and then order another before it goes off sale pain in the arse. We decorated this house before we moved in 12 months ago looks like shit now. House is constantly upside down we have so much stuff we need a good clear out hard to do around 2 little ones though. I've been trying to get garden sorted ready for half term aria breaks up again Thursday bloody crazy. I've painted mud kitchen yesterday/today and started on the sandpit box today too. Took ages to get all old sand out though its a bench lol.
I'm so glad it went well. More complex sounds good hopefully be really useful to her. Me too. Sophia is now waiting for salt too just seems like a waste of time. Health visitor came today and she said she doesn't know what 'development ready is' bare in mind these 'professionals' haven't seen aria in 4 months anyway it's a joke. I'm not sure I'll have to look into that.
Its ridiculous it should be equal opportunity for everyone who is struggling shouldn't it.
Nope not heard of that. Can you remember any of what was said? I would just ask them again and tell them you need it more simplistic terms if you don't understand. They just assume people understand all these things like 'ehcp' I didn't have a clue what it was initially still nto sure I do 100% but I had to ask more than once lol.
That's good you can ask them what they plan to use the extra funding for too.
Yes we recieve nappies I'm sure you asked your health visitor about them a while ago but they said you had to wait till age 4?
That's brilliant news we don't have that her either no help just me School don't seem too fussed about helping with potty training either. Feels like she will be in nappies forever.
That sounds lovely I'm glad Amelia enjoyed it and didn't upset her. Bless the woman it's hard when you have 2 little ones like that this is my problem when I go anywhere I need a 2nd adult with me. I don't know either some people don't take too kindly to others getting involved do they such a hard decision to make to say something or not.
My niece said she'd have her but a holiday came up so she can't now and I've paid to go. My partner will try and get it off work if not we will just have to not go I can't exactly leave Sophia home alone I'm devastated to be honest I sat crying last night when my niece said she couldn't have her anymore. Feel like if I say we can't go school will think I'm incompent saying I had childcare sorted when I now don't. Plus aria will miss out. She has 1 to 1 support but they have only taking her to the local park before.
I just feel sad about it. Both these miss out on so much qlready because of how aria is and now she's going to potentially miss out on something else its hard to not feel like your failing š
It was great nice surprise for us too that they enjoyed it so much and no meltdown. They really enjoyed the trampoline just unfortunate that one I ordered came missing stuff like everything I seem to buy haha
I can't understand why parents refuse to get their child diagnosed especially if it opens doors for support and therapy options. I guess most are either in denial or feel it won't change the childs condition. It's a very difficult and personal choice i guess.
Who has the health visitor referred Sophia to? It's hard to know if she is coping or not isn't it but I'm sure they will get to the bottom of it. Our girls are so similar, Amelia wasn't bothered if i left the room or if i went anywhere and still isn't really but Emily screams blue murder if i do. I bet you did get a fright too! Was she ok? Emily's crawling now and pulling herself up on things, i literally need eyes at the back of my head what with Amelia getting in to mischief too! I'm shattered by 9 o'clock lol
How can the health visitor not know what development ready means? What a joke.
Not heard of that place in Spain, I'll have to look it up. I miss going abroad. Me and my partner used to love holidays before the girls were born. We've been to Tunisia and turkey. I love turkey, one of my fav countries. Not brave enough to take them yet but would love to one day. Did you manage to get her passport? I'm still waiting for my driving licence i renewed last June! I know i should call them but i keep forgetting lol
Oh no that sucks about your trampoline! It's typical isn't it that something was missing. I hope you're able to get a replacement soon for them.
I did wonder if you would be able to get a pram through a charity but didn't like to mention it. I used to work for a charity and we used to have a welfare fund which granted people money to purchase items that benefited their lives. Definitely look into it if you can. Also i forgot to mention in my last message about the website i was given, its called local offer, you just put your county in front so mine is essexlocaloffer. Not sure if you're aware of it? It basically has information about what services and support that are available in your area.
Oh no I'm so sorry you were upset about your niece no longer being able to look after Sophia. It's so hard isn't it. Hopefully your partner can get the day off so that you can go with aria. She shouldn't have to miss out it's not fair. But please don't blame yourself when situations are out of your control, you are doing everything you possibly can.
Yes i did phone my health visitor about the nappies and she said the child needs to be over 5 and have a diagnosis š¤·āāļø Let's hope this continent specialist can help. Have you asked your gp if aria can be referred to one? So no one has contacted you in 4 months? It really is a messy system, nothing seems to be straight forward or consistent.
I just googled section 23 ( why didn't i do this in the first place?) It basically says that health professionals have a duty to inform local authorities if they believe a child younger than school age has a possible sen. So i was partially correct š no im still not 100% sure what a ehcp is either. It's all too much to take in.
Amelia brakes up this Friday for half term and can wear red while and blue colours for the jubilee. Are the school doing anything for it? Will your partner get the 2 bank holidays off?
Oh my house is upside most days, i only have a proper tidy up if we are expecting company! I don't want to waste time and energy on house work and miss spending time with my girls, you'll never get that time back. Funnily enough i made a start on the girls bedroom today, we bought pink paint around 3 months ago so i thought right while Amelias at nursery and Emilys having a nap I'll do some cutting in at least! š You should see the state of it.
I think they are just indenial or maybe they don't want there child to be stuck with a label and it hold them back but not knowing also holds them back it's really hard isn't it.
The child development center. The team that gave aria her diagnosis. Thats how they do it up here. She was fine. Although makes leaving her even for a min to go toilet even harder now.
Oh I wish 9pm was when I could sleep I have 1 or both of these awake then. I bet that's fun chasing her round everywhere lol.
Turkey and Tunisia my faves too. Not yet there's lots of delays took them 2 weeks to like her birth certificate to application and problems with other half's application too couldn't even make it up lol
I don't drive so luckily not one I have to worry about.
Yes they only picked it up this morning so waiting on the refund now probably take a couple week with bank holiday next week.
I'm not sure really it's on my list of things to do there never seems to be enough hours in a day lol.
Yes we have local offer it didn't find it very useful. Is it useful in your area?
Not specifically that she couldn't have her it just made me feel like I was failing girls if Aria has to miss out. Also makes me sad we don't have much of a support network. I don't blame my niece one bit for taking the holiday. Just sucks that my girls always miss out due to the way life is.
Stupid here it's 3 and no need diagnosis. Hardly anybody here gets diagnosis that early. Doctor told me there nothing like that we can be referred to available here that gives assistance just the incontinence team who provide the nappies.
Oh right not heard of it from what I can remember. Yes lots to take in. They need ehcp for a specialist school.
Aria broke up yesterday at lunch time. They have inset day today.
Thursday he has off that's been his day off for the last 7 months. Friday no chance lol
I wish we could have these in a room together but it's just so unsafe with Aria behaviour. Means there's 3 of us in the one room. Aria in the other. You'll get there with it though. There's always 300 jobs to do when it's nap time. Mind you Sophia doesn't let me she seems to sense if you leave the room even if she's asleep longest she stays asleep is around 20 mins once you leave the room I've never know anything like it
We've had such a busy week and now I've come full out in a rotten cold along with the girls bless them š we've all got an horrendous cough and Im booked in for a tattoo tomorrow š£
I didn't find local offer helpful either really to be honest. I feel like I'm going around in circles and not actually getting anywhere.
Amelias bedtime routine is going really well, as soon as i say its bedtime she takes herself upstairs and gets straight into bed bless her.
We had a visit from family services on Tuesday, the lady was really nice and gave me some advice on how to start getting Amelia out of nappies and how to communicate with her better. She also gave me a website where i can enroll on an online course to learn how to read behaviours and how to respond etc. Im going to look into it sometime this week, hopefully it will be helpful. Did you say you did this?
Ah yes nap time. Those 300 jobs just keep piling up don't they! And in-between those you need to eat and shower... Some days i get no time to myself or do any of the things i planned to do. Especially now that they are unwell, I'm running around wiping noses and seeing to them all day and all night too.
Wow Sophia has a skill, or a sixth sense! How annoying for you though. Does she nap in her bedroom?
Any news on the trampoline and passport? What happened with arias school trip in the end?
Half term was nice except a couple days when girls had d&v, today stressful so far.
Hope you all feeling better soon. What tattoo are you meant to be having?
Ye same here.
That's good. The second we leave aria room she straight out of bed playing again š past midnight last few nights hopefully school resets that tho.
Oh what website is that one? Sounds good if it helps. Least she actually tried to give you some useful information hopefully it all helps let me know how the poetry training advice goes for u all.
Ye it's rough. I feel like I can't even leave these for 2 minutes. Aria bit Sophia again yesterday and nipping a lot scratching her etc. She scratches herself too tho its awful.
Unfortunately she shares a room with me and her dad so I don't know how we will fix the problem especially as some point soon she will need a bed not cot lol. I was hoping they would be eventually able to share but I don't see that happening any time soon with Aria being how she is it's not a safe option unfortunately.
Had to get a new trampoline arrived late Saturday and weather was miserable yesterday there dad at work today so be tomorrow before he can put it up. Let's just hope weather is better tomorrow lol.
Passport nope. Did say can take up to 10 weeks.
School trips next week. Recieved a message saying they can paddle in sea this morning I'm not impressed I can see that going well with Aria š¬š¬ she wouldn't understand just paddle. I'm so anxious about it now. That's providing her dad even gets next Tuesday off.
The website is for Essex but not sure if there are others, the course is called SWAN (support with additional needs) i can't seem to find out when the courses run so I've emailed them.
Toilet training isn't going that well although she enjoys pointing to the different stages and taking the pictures of the velcro and putting them back on in the right order which is good i suppose. She follows all the steps correctly she just hasn't done a wee on the toilet yet
I did't get the tattoo done in the end i was so rough with this awful cough. It's now booked in for tomorrow. I'm getting 'emily' on my arm, i have Amelia tattooed so i thought I'd best get Emilys name too!
How's arias sleep routine now she's back at school?
Oh no did she? How awful for you all. Is it because of frustration? Is Sophia ok? It must be heartbreaking watching her hurt herself. We've caught Amelia pushing Emily over when she pulls herself up on the sofa, then she laughs so we think she's only playing but it's still not nice. She also threw a heavy coaster at her head yesterday, Emily really cried bless her. We tell her off but we don't think she understands.
Do you think aria will hurt sophia if they share a room? I was anxious about moving Emily in with Amelia as she's so little i didn't know how Amelia would react but she takes no notice of her which is good in a way. I guess it's different for you as sophias that little bit older isn't she.
Amelias obsessed with miraculous ladybug bug at the moment, it's literally on repeat in our house! We bought her the costume which she wears 24/7 and the action figure. We took her to smyths toy shop and she walked round it so lovely and followed every instruction. We actually had a day with no wobbles which was lovely.
How did the school trip go?
Did you manage to build the trampoline ok? How have you been anyway?
Oh right. Hopefully they reply to you soon and you'll be able to give me all the useful information they gave you haha.(really hope it's useful anyway)
That's a good start though she's showing the interest. Is she still showing interest now it's been a few days since you put this reply on sorry I've only just seen it.
I want a tattoo for my girls but haven't worked out what I want. Did you get your tattoo sorted now? Hope your cough has eased up now
Still late 10/11 even as last as 12 one night
Yes frustration. Most of it is Sophia wants aria to play and Aria wants her own space neither of them understands what what other needs. Yes it's awful I've been on receiving end and she really can hurt for such a small person.
See aria doesn't really understand pain and hurting people just yet. She laughs when Sophia makes a pain noise. Although if Sophia starts to cry aria has now started to cover her ears so things are affecting her a bit more
Oh yes for sure I go pee and don't take one of them with me or into a seperate room and Sophia is screaming. Aria room is next to bathroom they was in there together earlier I didn't even start to pee before she started to scream
Oh yes we had ladybug for a while not too long ago. Tbf there's a lot worse out there haha.. aww bless her sounds adorable. That sounds blissful I bet you really appreciated that day.
Mostly good although Aria was getting distressed on way back mainly coz of her seat belt and she started nip/scratching and even bit me
Yes eventually they love it and Sophia keeps saying to me 'mummy bounce' bless her she's adorable
I emailed them and they said that the course has finished for this term but i can register my interest for the next course and they will let me know when they will be running it again. It just feels like whatever i try to do theres a problem, its exhausting. Nothing seems to be easy, i get promised all this support but it always seems to be a waiting game or obstacles in the way. Sorry, im feeling so fed up today and deflated.
So much has happened which has upset me lately and im finding it hard to cope. Im on a group chat with some of the mums from the nursery (i think ive told you before) and they all seem to meet up and know each other, i join in with the convo now and again and i see one of the mums at gate and say hello sometimes. Well the other day they were all saying to this particular mum thanks for inviting us to masons (her son) party their kid had a lovely time etc. I didn't get an invite for amelia and when i saw her the next day she said nothing to me about it and i didnt like to bring it up. It really upset me as i know she knows about amelia and i think that's why she wasn't invited but dont want to assume. What makes it worse her son will be in amelias class and im worried its a sign of things to come.
I had a meeting with the schools senco and class teacher this afternoon so that they could get an idea of amelias needs and how they can implement support. One of the things they asked was for me to tell them about amelia, her likes dislikes etc. And i just went blank. Its then that it dawn on me that i dont know my own daughter. Its almost like the the lack of communication is a invisible barrier thats stopping me knowing what she is thinking or feeling. It makes me feel like such a shit mum. As i put her to bed tonight i just stared at her laying there looking around her room and i sat there silently sobbing. I just feel so helpless. All these thoughts flooded my head, what if she never talks? Does she feel safe? Does she feel loved? Is she happy? I try to stay positive and keep my mind active with learning about her condition and looking into activities i think she'll enjoy but occasionally i just brake down and feel like im failing her because i cant do anything to help.
And while all this is happening in my head i have a baby who wants all my attention and feel so guilty that i can give amelia more. Theres so much i want to do with amelia, like 1 to 1 stuff to help her prepare for school but i seem to spend every evening trying to get emily to sleep and then its too late and all amelias done is watch tv.
I hope you're doing well and have had a chance to rest? Sophia sounds so adorable, how lovely that she can communicate with you, i bet it means a lot. Oh bless aria for getting distressed, its so awful. Again its so upsetting not knowing how they feel or what they are thinking.
I got my tattoo, its really lovely and delicate š. Did you want your girls names? Or some sort of symbol?
Sorry for going on, it really helps talking to someone who understands.
Oh well that's one thing that's consistent across the board then always case for us too it's shite. You don't need to be sorry its good to have an outlet to vent to sometimes you just need that doing you.
Obviously I don't know these mums but I'd like to think it's more a case of she wasn't invited as they aren't friends rather than left her out because she's different. Unfortunately we have similar a lot of time with Aria and I wouldn't say she has any friends. At this age it would be nice if the parents could invite all the kids. Maybe it wasn't an option for the parents maybe limited on space or money restraints and couldn't afford to have all the class over. I'm trying to find nicer reasons why she wasn't invited because I know this exact feeling and I'm scared for Aria In this situation too. It's better to think the most positive than she's just been excluded for being different but unfortunately in our society its a way of life isn't it they will be excluded and its not nice. Aria doesnāt understand any different at the minute so that's a blessing. Does your amelia like parties I seem to remember you saying she struggled previously so maybe it's a blessing she didn't go? As a parent its a big worry and fear isn't it. The worse possible outcome is your children being left out. I really wish I could reassure you.
But ultimately you love your daughter and you want her to be included and if she's not being then nothing I say will make you feel better. It's because you care so much
You know I was exactly the same when they asked me. Its so hard when they put you on spot. When your doing whatever your doing over next few days right things down the things she enjoys the things she doesn't. Just because in that instance you can't think of what she enjoys doesn't mean you don't know your baby. You know she says the occasional word which is amazing you know she started interacting with her sister which is also amazing. Lots of little things will start coming to you. Things like does she like the Rustling of leaves when she walks was silly things I wrote down for Aria and her school actually appreciated it. Try approaching it a different way what things have you done places you've been last few weeks/months and what she's enjoyed. Sand play water play walking being outside playing with certain toy inside? Then write it all down. Any small or big thing will help. We still struggle now when Aria is having a meltdown and she's full blown meltdown what works. Don't be so hard on yourself.
I don't knownif she will ever talk but what I can tell you is she is babbling and we've been told that's a good sign she will speak a lot higher than if she didn't make any noise or sound but at this stage nobody can make you that promise she will speak. Same for my Aria. All we can do is hope that she does and in the mean time try Manaton or peks anything that may lead to her finding her own way to communicate with you. With or without the words. Does she come to you for a cuddle, when she's doing something and needs your help, does she look for you, does she hi 5 you? Anything as simple as a hi 5 or holding your leg or any kind of reaching out to you shows me she feels safe. The fact she's not screaming for dear life all day everyday also shows me she feels safe. Aria doesn't like physical touch but her way of wanting affection and showing me her love is a hi 5
Does she laugh or jabber away to herself? I was told this means Aria is happy and content in herself. There mind works completely different to ours it's an absolute minefield. You know what I massively fail at being positive especially on bad days. Don't waste your energy trying to remain positive on a bad day your allowed to have your struggles and worries and trying to force them away can be just as draining Obviously I'm not saying sit and cry over your worries everyday but it doesn't hurt to have that time have a cry have your worries validate how you feel as a person you can grieve for this situation and its OK. You can not predict your child is going to be different to everyone else no matter what anyone says and its damn bloody hard. You need to allow yourself to be upset about that on occasion. I feel like I'm failing all the time so I know how you feel. But your not failing. Sometimes it just feels like you are and that's a bloody shit feeling I know. This honestly is the one feeling I wish i could take away from you.
Its a massive learning curve and I'll tell you something with activities if amelia is like Aria the ones you think she will love she will hate and vice versa. Don't spend a massive amount of time planning or put loads of effort into an activity do a minimised version where possible and if she enjoys it make it bigger. A big activity can be overwhelming and cause a meltdown too and that's also OK it's sensory overload and can happen from lots of things
You are only one person and can only do so much. I wish there was two of me so my girls could have 100% of my attention but you do what you can and that has to be enough! Aria likes simple things like sticking so I got a couple of mosaic sets she can do on her own but even if I get 5 mins to just sit and do that with her. If I I I can still watch her do it and gets her away from the TV for 5 minutes. Is there any activity amelia likes. Drawing they have the magnetic boards so it doesn't have to be a pen. Or aquamats with the water inside the pen. It's about trying to think outside the box too. It's not quite 1 on 1 but it's also not 100% tv either. You have to remember Emily is just a baby right now so she will need lots of attention. Someday amelia will just have to be OK with TV. At least she is safe. There's lots of learning resources online too you could try putting some of those on the TV if she will watch them? With words or colours. Your not superwoman you can't do it all. You do what you can and don't beat yourself up. There's so many things I want to do and I so wish I could have more 1 on 1 with both girls there only so many hours in a day qnd routine takes up so much of that time. But even if you can get 5 minutes in it's better than nothing and if you can't well try again tomorrow ā„ā„
Sending you big hugs. Also I'm saving this comment for me to read back on as 90% of what you wrote I could have wrote myself maybe I need to take mynown advice haha.
Nope been a shit week here to be honest. Hardly slept at all over the weekend come tea time yesterday I could barely keep my eyes open and then bed time for sleep wide awake 3000thoughts running through my head.
It's lovely but I'm still worried at the moment she's so far behind where she should be with her words. It means so much although makes me sad for Aria. The fact she's 2 1/2years older and has less understanding. Thats how her life is going to be makes me sad for her.
Aria behaviour wise has just been horrific this week I just don't know what's wrong.
There's names with something.. but what I don't know
I'm glad you did please don't apologise. It's nice having someone who feels the same as me so I know it's not just me. I'm just so sorry for you that your going through it because it's the worse feeling in the world.
Thank you so much for replying so soon and for listening to me. I really needed to vent yesterday and I'm so grateful i have you to help me make sense of it all. I really appreciate all of your advice and will take it all on board. It means more to me coming from you as you are living it rather than it coming from someone else who doesn't experience it first hand. You have really helped me and have definitely reassured me, so thank you š
No you're right Amelia isn't good with parties and i probably wouldn't have gone but it would of been nice to have been included. I feel like leaving the group as it's pointless me being on there, not just because i feel left out, i know it's also down to me too as i haven't made much of an effort, but then its not due to laziness I'm reluctant and anxious because of Amelias possible behaviour so I'll probably never met up with them etc. Maybe it'll be different when she starts school, I'll try and make more of an effort.
Writing stuff down is a really good idea. I've been keeping a diary of Amelia's behaviour and triggers so i could add things she enjoyed too. It's something that's so simple but effective.
So i found out today from the nursery that there is a 10 month waiting list for a pre-school autism assessment. I gob smacked. The nursery agree pushing for it to be sooner at apparently it's easier to get a diagnosis at this age rather than when they start school and they have no idea why. It really doesn't give me any faith in the system and makes me consider going private.
Yes she does come to me for a cuddle and now and again i get a kiss! But only when she's in the mood. I forgot to tell you in my last message a good piece of news, Amelia copied me the other day when i said i love you. I was in shock, i couldn't believe she said it š she also hi 5's me when she's done something good like putting something in the bin. She copies mostly, like blowing a kiss, waving, pretend sneezing, she rarely does them of her own accord.
Amelias funny when it comes to activities, she's either got to be in the mood or it has to interest her otherwise she only spends a few minutes there she's back to wanting the tv back on. She has so many toys and stuff that the nursery had mentioned she likes but she sends to go through phases. Is aria similar? Does she spends a while on each activity? It's very much follow her lead.
It's hard not to compare your children isn't it. Especially milestones but what we need to remember is all children are different and have different learning journeys whether they are sen or not. All what you said about them being happy and content is so true, they must feel loved and safe in their own way. That's interesting what you said about babbling and giggling cause that is Amelia 80% of the time so that is reassuring. Is aria animated in her movements or exaggerated? I looked up high functioning autism and Amelia seem to fit those symptoms.
Could arias behaviour be because of the hot weather? It's a constant guessing game isn't it. As you said they see things differently.
Tiredness is the worst. I really feel for you. Yes save your last message as it's so helpful and you really would benefit from following your own advice! š
I actually got an email yesterday and today when you've replied which helps as means see your message haha.
I'm glad venting helped. Half the problem trying to find advice I think with our kids being how they are it's from a 'text book'or answers found online which is great in theory but our girls aren't normal standard girls but even if they was no child is typical standard textbook they are all different it's not that straightforward at all. It's so hard finding the support from someone whos had experience first hand to have ideas of what to try. I feel like it's all guesswork and our kids are 'the guinea pigs or the experiment' bloody awful when you think about it.
Oh yes for sure nobody likes or wants there child to be excluded. I don't know this parent perhaps they though they was doing you a 'favour' by not asking it's nice to think they was trying to be kind and not wanting to put you in a position you had to decide or put amelia in a situation she wouldn't enjoy then just outright exclude her. Ultimately I feel whatever the reason a bit of acknowledgement towards you&her would have been nice. Sometimes people just don't know how to approach us mums that have kids that are different and that can result in them ignoring you. It's hard for them too but in a different way? It's one of these situations we are going to have to try and toughen up about as parents as I feel like it will become the norm for our girls as sad and deflating as it is.
I don't know if you leave the group will it make you feel more isolated or not? I don't know if they will be more distant towards you from what you've said they can't push you out much further. Is there a mute option on this chat that you could try for a while instead if you need to check you still have access? How long does she have left at this nursery. Aria break-up for the summer soon.
I don't know though because I imagine in that situation where they are meeting up or have x y z event planned or even standard normal parent stuff planned when your child is different in whatever way its not relatable you can't relate to what they are saying and then your self doubt comes in why is my child doing this and not that etc etc and also you have nothing to reply back with. By time you find something relevant to say back conversation probably changed 3times and then whatever other feelings anxiety comes in and I feel like you could try and explain about amelia but its not necessarily going to help other parents don't always relate to you and that's OK. Your are in this chat so the olive branch was there they did try at one point to include you whether or not thays still the case now. At least they did add you to this chat. I just wish it was easier for you to be and feel included in it
School may be different but overall I don't think it will be. If possible be great to have the support of other mums or someone's to have a quick chat to in a morning so I would make a bit of an effort to begin with see how it goes but don't force the issue and put loads of pressure on yourself. What I've found is some parents understand a bit, some parents try and others just seem to stare at me and not really speak. Maybe they want to but don't know what to say. At this age most of the children seem more accepting of Aria as she is than then adults.
Yes but for your own sanity maybe right down the good too as a seperate list. Could be she held Emily hand or she smiled at you or hi 5. I find it really sad making all these negative lists. Aria has her struggles and her bad days and these list to me make her out to be 'naughty and a bad child' when she's not really naughty at all there's generally a cause for her behaviour
But anyway if the negative list does make you sad you can read the positive list after and hopefully make you smile again. All the dla and ehcp stuff is all the negatives they want and not really any of the positives so that's why I say right your lists seperate.
Arias took around 2 1/2 years from beginning to end felt ridiculously long yet some people wait so much longer and it definitely seems harder to get the diagnosis later. A bit part of the reason for girls is as they get older they learn to mask and they don't shoe the behaviour in school which makes it harder to prove and get the diagnosis.
As for going private if you can afford to donit by all means go ahead. I don't knownkuch about it from the brief time I looked into it I was told you need to make sure who does it is accepted by NHS/school otherwise its a bit pointless. For us Personally the diagnosis hasn't made a difference anyway she doesn't reciebed anything more now than before she was diagnosis unfortunately.
Aria is the same always on her own terms but so amazing when it does happen. Oh my I bet that was so amazing. One of those why did I not have a camera recording moments š„°š
Oh Brill that means she gaining more understanding too. That's so cute and amazing bless her
Few minutes is better than nothing and it's a starting point right? It's great she has days when she's interested and will sit and do things for longer. Aria does have stages with toys. Aria is very much what she wants to do. What school have started doing is using a visual timetable and they give her 2 choices of activity she picks one which she can do after 1 activity they chose so even if it's just a few seconds or few minutes it's trying to help build her time on activities not as much of a interest too her.
So hard not to. What's sad is Sophia has over took how Aria is now even though she's still behind where the standard 2 year old milestones are. So even thought it feels like she's doing really well she's not.
Aria likes to run or flap but not really exaggerated in other ways. She doesn't do much after school now though she usually quite tired but then still doesn't sleep till like 10/11pm
God today has been a nightmare. Amelia has been so naughty. She's usually like this when she's sickening for something. She's fallen asleep on the sofa again no earlier than 11 for the past 2 nights and I've had to carry get up to bed and she's so heavy. I completely ran out of patience with her today and all i seem to have fine is shout at her which i hate doing. She's in the habit of throwing things too, like my phone š i really struggled keeping it together today.
Then I've got my dad who is in he's own way only trying to help asking me when she's going to be seeing someone next because she's being so naughty and we all need to know why. It's only been 2 days and it's because she's getting a cold. She's normally good as gold but straight away he assumes it's because of her condition and feels helpless that he can't 'fix it'. I explained that there's no cure and it's just who she is and how she trys to communicate to us that she feels poorly. I'm so fed up with having to justify/explain her behaviour every single day. It's my dad who suggested going private. I think he just sees how upset she gets and how hard it is on everybody. He's very black and white in his thinking.
That's a good idea about muting the group chat. Not that's there's been much activity lately. I keep seeing that mum now at the gates and she makes a point of saying hello, perhaps she feels guilty? I'm not going to stress about it or put pressure on myself. If i get taking to some mums i do.
Most of what you write is like you know exactly what's going on inside my head! It's so strange thinking these thoughts and then seeing you write them down. It could be the smallest thing that i experience on a daily basis that i don't pay much attention to at the time and you bring it up and it all makes sense.
Yeah I'm not to fussed about diagnosis compared to speech and language. I just think it's helpful for the school to have one before she starts otherwise i don't really think it will change anything for us apart from officially putting a label on her. The school want to refer her to an occupational therapist too. Not entirely sure what that will involve.
I've heard that girls mask, i think it's awful not feeling able to be yourself. Plus it must be exhausting.
The nursery tried the choice board with Amelia but apparently it didn't work. Does it work with aria?
I will definitely start the lists, I'll start fresh next week when she's hopefully feeling better.
Have you had any appointments through for sophia yet? It's such a worry isn't it. It's she still coping arias behaviour? Does she go nursery yet? Sorry i can't remember if you've told me it not.
Amelia runs up and down the living room but crosses her arms. She used to flap her arms at around a year to 18 months old. She also makes a constant humming noise when she's happy or excited. I only asked as i wondered if it was apart of her autism, the exaggerated movements i mean, and she's quite ridged too. It might be down to her hypermobility.
I'm struggling with tiredness lately. I just feel physically, emotionally and mentally drained. Plus my partner hasn't been hiself for a few months now and collapsed at work on tuesday. I think he's going through a spell of depression but he's so stubborn that he won't call for a doctor's appointment so now I've got that worry too!
Someone recommend i try meditation. I mean I'm willing to give anything ago if it helps!
Sorry didn't get a notification this time. Hope Amelia has been better since her naughty day and not got.poorly. You are just one person nobody is perfect and believe me I have days where I shout at these too. Sometimes it works others not. Aria does throw things too. I haven't got any advice really just keep doing what your doing.
The older generation just don't understand it. My mums partner had me in tears fathers day. Aria had a meltdown and he made us leave the pub we was it and then he made some comments about her doing it on purpose and she's knows what she'd doing etc. It made me feel like complete shit. Like dont you even know Aria?
Unfortunately there is no quick fix appointment or not. They dont realise how what they say can affect you. I'm not saying what your dad said upset you but it would have me. I definitely need to get a thicker skin.
Personally I haven't found arias diagnosis helps at all she's had no support and child development center who gave diagnosis have only kept her case open with them due to sleep issues. If they close it thats it no contact or support till some point after she turns 5 as nothing else they can do. My niece little boy has already had his case closed with them and he not 5 till March so she won't have any contact.
I think if you could look at speech therapy or occupational therapy paying someone to help with those may be more use as that's actually giving her something and trying to teach her.
Just look at all your options obviously your area works differently to mine and I know.private diagnosis is not cheap I wouldn't want you to pin all your money into it thinking it will help. It may help nobody can say for sure.
Maybe she feels guilty or maybe she's trying to reach out who knows. For me I've always said hi to mums who say hi to me. Keeps it friendlier I guess, I have enough anxiety about Aria and school as it is so if someone there is nice I just appreciate it makes it feel more normal. Even a good morning from someone can improve my mood when stressed that's why I say it may be good for you. Not everybody is the same though and definitely don't push yourself into it.
It's like your the only person who seems to fully understand the situation I am in. It's nice that you understand a lot of what I feel. Just a shame not closer. Strange that though haha. It's nice though
I think it's everything I always wanted salt more than diagnosis. I appreciate the diagnosis I just wish it gave her the support. That would be good I wish our school what put aria forward for occupational therapy.
Yes I've heard it a lot too. No idea if aria will when older but she does not have that understanding right now. I would prefer her not to, if I'm honest. We shall just wait and see how life goes I guess
It didn't use to they have been trying on and off for best part of a year with her. Somedays it works now. Seems pointless if it's not working to keep trying but that's advice we have been given. How annoying
Have you started any lists yet? I always say I'll do something and then it gets left so easy to get side tracked with 2 little ones
Hope Amelia feelin better?
They said when accepted referral inital appointment take 7 months. Not clear if that's just a phone call or face to face. No she's not at nursery yet. Aria mainstream school doesn't have nursery attached or near it so God knows where Sophia will go nurserywise as most places start at 9 and I walk so can't get them both to different place at same time. To be fair though I would not want Sophia at arias school. I've heard so many people say what a bad school it is and they have concerns for there child its scary.
Sophias not entitled to free child care hours based on my partner earnings so be Feb before she's entitled to any free.
It can be. I've heard it's called stimming? I think it was repeating the same noise continuously it helps them. As long as its a safe one
Oh the tiredness. You need to make sure your taking the time for you. 2 mins 5 mins 10 whatever you can make work. Have a bath. Read a couple pages of a magazine whatever you enjoy just for a few minutes.
Unfortunately you can't force your partner to get help. Just keep reminding him your there and occasionally mention that docs may be able to help.
If you need help speak to your docs yourself there no shame in asking for help. Its better to ask for help and feel better for your children. I hope he's OK?
Be another one of those research lol. But also speak to docs or whoever is 'helping with amelia' I use the term loosely. Speak to them and see what the recommend/advise regarding meds
That's ok, hope all is well your end! Amelia did come right out in a cold and so did the rest of us! So now i understand why she was being naughty. She is still getting into mischief but what child doesn't?! š
Her behaviour is changing but I'm guessing it's down to her getting older? She seems more alert and aware of her surroundings. Shes doing more things for herself like she walked into the kitchen this evening and switched the light on so she could find her bottle. She's never dome that before, only turning them on and off in a playful way. She also cuddled my mum and dad on her lap for the first time the other day š She seems to be saying more too, both copying and off the top of her head but it's still not consistent or no where near as much as what she should be saying but its a start in my eyes. Saying just 1 or 2 words to her and not asking to many q's seems to be working.
You're right the older generation don't understand at all, the have no filter and have a tendency of saying the wrong thing. It did upset me and got my back up too but to be honest most things do lately, i find myself snapping at the most smallest of things and then think about it after and either feel really guilty or angry that i didn't say the right thing. I get so flustered and can never say what i think without sounding stupid or irritated.
Good god, father's day sounds awful, how horrible for you. Poor Aria, my heart breaks for our girls you know and the ignorance of people. Do you normally have a good relationship with your mum's husband? Does he see Aria often? That's such a horrific way to react and such a horrible thing to comment about Aria. I would have been so upset if that was Amelia, in fact i probably wouldn't have been able to hold my tongue.
How can they close a case for a child with sen? That seems ridiculous to me. It's not just the child who suffers but the parents too. Without support we are just guessing whats best for them when what they/is need is professional guidance. I really have no faith in the system. I still can't believe aria isn't recieving s&l therapy.
I haven't started the lists yet, i want to get a proper notebook and what ill do is keep it on my bedside table so i can jot things down before i go to bed. Since you've said about the lists I've been noticing the good things Amelia's been doing so it's opened my eyes to positives rather than the negatives all the time š
Oh that's hard isn't it with the nursery and school. I mean nursery isn't compulsory but still nice for them to go. Are there many schools within walking distance near you? Does arias school do after school clubs? Maybe Sophia could do a few afternoons a week at a nursery? Why is the school bad if you don't mind me asking? It's such a worry isn't it.
Yes stimming that's it. It used to be constant but it has calmed down since she started nursery. Does Aria stim?
I need a break, I'm gonna ask my parents if they can watch the kids Saturday night so me and the other half can go out for a drink. The only time i get to myself if when they've gone to bed which is usually half 10/11. I don't like to keep asking my mum to watch the kids so i can only have a bath/shower, so i wait for when my partner gets home and that's usually after dinner and after we've bathed the girls and i find myself rushing because i know my partner needs to shower and get his work stuff ready for the next day. I don't suppose you get to have many date nights do you?
My partner seems a bit better, he's type 1 diabetic so i think that is what's happening to be honest. He collapsed because he's blood sugars was low. He still isn't right in himself but you can only help people so much. I think getting out this weekend will give us a chance to have a chat actually.
It's such a shame that we are so far apart, it would have been so good to get together. You've made a huge difference in my life and have helped me so much. It's amazing how much better it feels knowing that you're out there š I've started going on Facebook a bit more now, did you want to add me as a friend? It would be nice to see photos of the girls as I really feel I've got to know them these past few months. My name is Hayley Winter. My profile pic is of me and the girls.
Oh how lovely, i bet the girls had a wonderful time. How was aria? I haven't been to a butlins in years! Theres always do much to do there and is great for families. We are going away for a few days at the end of April, it'll be out first holiday as a family of 4 so we are looking forward to it. We are staying in a cabin at a place called sandy balls š
No youre right i don't think she will ever get used to it fully either. I am part of a mums group chat on whatsapp from the nursery and one of the mums has invited us all to a soft play center for her son's birthday this week. I've never met any of them and none of them really know Amelia so it's hard to know what to do. I know Amelia won't like it so I'll have to make up an excuse. It's such a shame as for one she's missing out and two id like to get to know them all so i have more of a social life cause at the moment i have none.
It's funny isn't it how some days you are able to stay in top of things and others you just feel like curling up into a ball. I guess it's the same for all parents, we are no different. And yes we all need a break youre right.
Try not to worry about what people think, just enjoy aria in the moment āŗļø i know it's hard as i feel the same but at the end of the day they are who they are and for anyone who doesn't understand, well then its out your control, you shouldn't have to feel like you owe anyone an explanation.
I know what you mean about them choosing stuff, Amelia has only just started to do it too and like you i can't say no, even if she picked up a pack of tena lady id buy them for her lol. We took her for a walk down the sea front today without her buggy for the first time and she did brilliantly. She held my hand and walked along side me fine. She was such a good girl. It's just the roads im cautious about, she has no sense of danger and i don't think she'd stop if i told her to.
I got a call from the family services and missed it! When i called back it went to voicemail so i just left a message. I've not heard anything back from Essex parent and carer forum, it's very strange. I might email them and ask what's going on lol
Ah that sucks about your partner not being able to get time off easily. Surely hes entitled to holiday? It's extra stress you don't need isn't it.
No i didn't get a photo unfortunately it did happen too quick. They had a bath together for the first time the other day, i didn't think Amelia would like it but she had a lovely time. She shared her bath toys and thought it was highly amusing pouring water over Emily's feet! š Shes paying her so much more attention now. She had said more words too but none of them are consistent. She'll just say them the once. Like i was playing with her on my lap and tickling her when she laid across me and put her head down and backwards and said upside down. I was astonished! She's never said two words together like that before.
Have you got any plans for Easter? For some reason Amelia has 3 weeks off.
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Hello to everyone :)
Sensory processing disorder and ASD
Daughter with AS behavior
Advice or Any tips
Help, advice needed.
