Calling on parents/carers of autistic children. I need help!!!

Hi.

Today, my Fibro has taken a back seat to dealing with my nephew, Flyn. I'm having great difficulty dealing with some of his behaviours and really need some advice, please. If anyone can offer any help, I would be so grateful.

He showed some aggressive/threatening behaviour today while loosing patience with a simple task I asked him to perform, and my response was probably not appropriate or productive.

As a child, I had a really difficult and unpleasant relationship with my Mum, and I always dreaded 'becoming' her if I ever had children of my own. Sadly, Burnie and I couldn't have children, so my concerns became obsolete. Now that I'm facing such difficulties with Flyn, my concerns are raised again.

I'm feeling emotionally and physically drained more so than normal today, and I just don't know how to cope with my Fibro and Flyn at the same time. I'm usually an affectionate and patient person, but just lately, I don't want cuddles or kisses from Flyn and my patience is running at an all time low. Burnie seems to be coping much better than me, but i'm the one who spends the most time with Flyn.

His behaviour at school has been worrying too. We discuss with him each argument or 'incident' he gets himself into with other children and explain how his actions have impacted on the other child, and what actions he should have taken, but the behaviour still continues on a regular basis. He never admits that he may be in the wrong or to blame, and his story always differs from that of the teachers who inform us of what's happened.

Flyn has poor social skills, no patience, no listening skills, has anger/temper issues, frequently argues, doesn't know how to take responsibility for his actions or understand the consequences of them, and frequently talks about violence with great delight. His sense of humour is understood only by himself, and is often inappropriate or unpleasant. He always wants to control the content of a conversation and always interrupts others, and hardly ever stops talking even when he doesn't really have anything to say.

I'm sure those of you who have autistic children can relate to what you've read here. As I said at the beginning, any help or advice that you can offer would be greatly received.

Thanks to you all for taking the time to read this. I hope you're all having a good Fibro day (if there is such a thing!).

Hugs,

Carolanne. xx

18 Replies

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  • Hi Carolanne . Can I ask how old Flyn is ?

  • Hi Helen. He's 11.

  • hi there ,i dont have an autistic child but i was just wondering do you get any help for him ,im sure there must be some kind of network to help you and him to cope better ,

    im sure there will be some one come along soon who can help you ,xxxxx

  • Hi Lynz.

    I have emailed the parent support officer at his school to see if she can offer any help, or at least point us in the right direction. We've also contacted a local support group too. I just thought that someone here may have some first-hand experience, also understanding my Fibro too. xx

  • My son is autistic and the first thing I'd suggest you do ( if you haven't already ) is ask if there is a local CAMHS ( child and adolescent mental health service ) in your area ( your GP can refer you ) .

    Flyn should be assigned a specialist child clinical psychologist , speech therapist etc and CAMHS normally have all these specialists under one roof .

    Our local CAMHS were brilliant. They held parents work shops that taught coping strategies on how to cope with the melt downs and behaviours and they also held social clubs for the children. The speech and language therapist helped a great deal to teach my son how to behave in social situations, how to recognise facial expression and tone of voice etc. The supervised social clubs helped the children to engage appropriately with each other under supervision. They also helped with organising financial support , DLA etc. Sometimes just meeting with other parents was an enormous help, and there were regular coffee mornings held.

    I relied heavily on my son's psychologist and the mental health support nurse at the centre . They can also help organise respite care if needed.

    Coping with autism isn't easy , and even worse if you're not well yourself . Take whatever help is offered , and don't feel guilty ! I'm sure Flyn's mum wouldn't have wanted you to try to deal with it all without help and support.

    Hugs

    xx

  • The one thing I learned the hard way Jules is help isn't offered you have to go and find it. Mental health services around the country are seriously under funded .

    I had to fight to have my son statemented so he could have support in school. The educational psychiatrist at his junior school was as much use as a chocolate teapot so I took on the local council without her help, but with the support of CAMHS my son got his statement of special educational needs and went on to get both GCSE's and A levels . Something his junior school said he wasn't capable of .

    Is Flyn in a special needs school or mainstream Carolanne ? At 11 he's at a transitional age and will need support as he enters his teens. Autistic children still go through puberty and that can be a rocky time ( as with any child, but more pronounced with autism ) . If you can get support in place now, it will be so much easier for you over the coming years.

    xx

  • Flyn is statemented and in a special needs school. His birthday isn't until September, so he's in year 6 now. We will be moving in the summer when Flyn finishes school, and then he'll naturally go up to a secondary special school.

    I would say that mentally, Flyn is about 7 or 8 years old. We've asked for speech therapy to be undertaken at his current school, and also to have sessions with a child psychologist which they offered, but this hasn't happened yet.

  • It's something you may have to push for I'm afraid , I found out fast that he who shouts loudest gets best results sadly.

    If Flyn is getting enough support at school then it sounds like it's you who maybe needs some support ?

    You could have a look round online but I still think your best bet would be to approach your GP and ask if there are any support groups in your area .

    Hate to say it but if you're moving home that has the possibility of causing Flyn to become more upset , just because it's a change . Learning how to prepare them for change is one thing that a good psychologist can help with .

    I found with Paul that he is emotionally around 5 years younger than his real age , and apparently that's common . The problem we had was that physically he was going through all the normal hormonal changes of a teenager but was even less emotionally able to cope with it than a normal teenager would be .

    I found being in touch with other parents going through the same things was a huge relief ( and saved my sanity ! )

    xx

  • Thanks Helen. I looked up CAMHS and it seems they only covered the London area, and have been taken over by YoungMinds.

    It looks like a great site, with plenty of options to get help.

    Thanks so much.

    Hugs,

    Carolanne. xx

  • CAMHS is part of the NHS so should be available in most areas . I was in the West Midlands and had one local to me .

    I think you need a referral from your GP though so it's worth asking there.

    If you type CAMHS and your area into google it may bring up more info .

    If you need to chat or just to vent please feel free to contact me.

    Good luck and hugs .

    xx

  • OK, thanks Helen. We've been busy researching in the net for the last hour or so!

    I'm sure we'll get there in the end. I'll try not to feel the need to bother you again, but appreciate the offer.

    Take care. Hugs,

    Carolanne. xx

  • hiya,

    ceefax should help. my friends boy has behavioural problems but they are not sure if he was aspergers or autism or adhd. My boy is the other end of the spectrum. He is very inward and doesn't want to play with anyone. He is hard to cope with too. He has learning difficulties and has to also go up to great ormond street hospital for a large a-orta and as he is still very much under testing.

    all i can say is i am here if you want a rant or just a chat.

    love to all

    from kerry29

  • Hi Lynn.

    I get what you mean about my stress levels! That's probably one of my biggest problems at the moment. I've tried the calm way,the caring way and I've tried the loud voice I'm not happy with you way, but nothing seems to work!

    At least i have time during the school day to chill out, depending on what kind of a Fibro day I'm having. Burnie and i are tryin to work together on this but we don't always agree.

    I do try to make the most of the time i have alone to relax but some days it's almost impossible. I know things will be much better when we have all the help in place.

    Hugs,

    Carolanne. x x

  • Hi Carolanne, so sorry to hear what a tough time you have having at the moment, I can empathise with you as my friend has a 4 year old with autism and it is a very difficult diagnosis to deal with. A few things flag up to me, you mention that Flyn's account of what happens in school can differ from what his teachers tell you. People with autism usually see things in black and white and are usually unable to tell a lie, could it be possible that he is telling the truth and is frustrated when you get told a different version of events?

    We find with Harv that visual aids help a lot with change and things he is not allowed to do. As an example, a red cross is used for anything he is not allowed to touch i.e. the computer, this also works for any areas he is not to access such as the kitchen. In nursery they also use a chart for start and finish of tasks and then have a finish box to put the flashcards in once the task is finished. Is it possible something like this may work for times when he may be agressive to show him that this behaviour is not acceptable. I believe there is also a chart you can get with everyday task on to use as a prompt such as washing dressing etc. Maybe this is a bit young for Flyn if he is 11 but worth a try if it works and makes life easier for you.

    I do empathise with what you are going thro at the moment cos Autism is a very complex condition and no two days are the same. Easy to say don't get too stressed but not so easy to do when you are in this kind of situation. You don't mention if you get respite care but if you can take advantage of this it would take some of the pressure off you for short periods of time. Take care and keep battling on, you are doing a great job and Flyn is very lucky to have such a lovely Auntie as you. Love Angela xx

  • Hi Carolanne,

    As previous posts have stated CAMHS is run by the NHS and is UK wide.

  • Sorry hit the wrong key again.

    As I was saying, you can be referred by HV,GP or School Nurse. You will really need to chase the GP for the referral to see a paediatrician and then give them a ring as soon as you know the referral has been sent. I know all this as I work for Paeds dealing with Children with Special Needs. Get the secretary on your side in the first place and I'm sure they will give you all of the help that you need.

    I know persoannly what it is like trying to cope with someone else's child who has these specific needs as my youngest stepson has severe ADHD/Dyspraxia sometimes you could just stand there and cry. You need to get the help in place before he gets much bigger as puberty will soon be kicking in and he won't know how to handle his feelings. If you get the chance to let him join groups or have restbite then do it, if you are happy and rested and manage to get a break then you will be better equiped for when you have a difficult day with Flyn.

    Good luck and remember that you have to look after yourself firstly or your not going to be able to look after him.xx

  • hi, my son has adhd and aspergers but is in mainstream school, he gets small group help and one to one for social skills. as a single fibro parent its an absolute nightmare at times!!!

    learning which behaviour u can ignore and trying to relax while they at school is crucial, also if you contact scope foe example you can get a worker to see him outside school times and do something with him.

    also the family fund are very good at helping financialy with extras (including holiday vouchers)

    take care xx

  • Hi, Carolanne. I am the Guardian of 2 of my grandsons. The eldest one has Bi Polar. This presents very much like Autism and is often classified under the same spectrum. My sister had it and my eldest daughter and my son also have variations of it. I felt I failed my daughter & son, because by the time I had realised there was a problem and then saught help, they were of an age to refuse medical help. Which they did!. When my grandson was 9 he started showing the sames signs as his mother and uncle, so I went through all the channels also his primary school was very helpful. While he was still young he accepted the medical intervention. Unfortunately as soon as he moved to senior school, the 'waters got muddied'. Change is difficult at the best of times but for these children more so. The school refused to acknowledge that there was a problem and his Dr changed. This led to him being taken off medication and only being offered counselling. This my grandson refused as he was now deemed able to make his own decissions. He is now 16 and frankly has struggled with life all thro senior school. He exibits all the same traits as Flynn and the older they get the worse it is. I don't want to paint a gloomy picture for you, but the bottom line is, keep the Drs. and school on your side and make everything seem much worse(If ever it can be worse!) than it is. As someone else remarked. "Those who shout loudest get the most help" I have workerd with children with Autism and ADHD etc, but still feel I have failed my own. You need to get Flynn to accept the Drs are on his side and hope that he won't refuse the help that IS out there if you can find it. I do hope you can get some family help especially as you yourself have your own problems. Sue.x

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