....are what it's all about. After a good few weeks of feeling really rubbish and down, I'm starting to feel loads better and today I actually feel 'normal' - back to my old self before this whole sorry saga began. Had a lovely day out in York with this beaut 😍. This is Amy my middle "child" . She's 26 now but looks about 15 lol. she's autistic with very limited verbal communication but does brilliant echolalia (repeating things) and has us in stitches. Her latest thing is mimicking David Attenborough - she's so funny and brings us so much joy. Amy lives away from home now as, despite looking like an angel, she can be a tinker especially through the night and, much as it makes me sad to admit, I just I cant look after her properly now. But she has weekends at home which gives me so much to look forward to. And when Im with Amy, I have noooo time to think about bic C - bonus 👌. I'm so lucky to have my 3 grown up kids and soon to be first grand child - they give me all the strength and motivation I need to fight for a future and whoop this horrid disease's ass!
Days like this....: ....are what it's... - SHARE Metastatic ...
Days like this....
Im so glad you are feeling better, Amy is beautiful. I hope you continue to feel better. God bless you and your family.
Thanks Kduck, me too, it's been a really rubbish month but defo on the up again. I think Amy's beautiful but then again, i guess I may be a little biased lol. Thanks again. x Josie x
Hello Josie, I am so glad you feeling this way. That is fantastic. Your daughter looks so beautiful, and congratulations on becoming a grandma soon. You will enjoy it so much. I have 3 and love them to death! We all will kick this horrible disease’s ass! Hopefully!
👍😂❤️
Sima
Thanks Sima, Im v excited to be granny J. We absolutely will kick ass. Thats my frame of mind right now. Im like no, go away, I've way too much to do to be ill. Be gone big C 😆. X
Hi Josie,
I'm glad you are feeling better and get to spend time with Amy. You're right; she does look sweet and innocent! It certainly is a distraction to care for others, as it can take our minds off of our own worries.
Take care,
Sophie x
Thanks Sophie I'm so relieved to be feeling more like my old self. X
You're welcome, Josie. It must be a real relief. x
So glad you are back to your old self. It’s so great to feel normal at times.
Amy looks beautiful, and so happy. I’m sure she is going to love her nephew or niece too. You are going to be even busier with another addition to your family. Clare 😘
She's so happy most of the time. The challenge is she has to be on the go ALL the time. She's exhausting but its good she can access most activities without it having to be autism friendly - pictures, swimming etc. She certainly keeps the ladies who look after her busy lol. The trouble starts when she's thwarted and also she'll bolt if she sees something she likes/wants. Ive no chance of catching her now lol. She keeps saying 'baby's called?' Try explaining it to someone with minimal verbal communication lol. Tried what they call a social story but at the end she just said 'Baby's called?' Hahaha bless her. I said 'you choose Amy' so she thought for a min then said Baby Jemima. Be hopes its not a boy then 😂😃😂.
Ah cant wait for Baby Jemima to arrive 😆. In fact hubby's working today so when Ive dropped Amy off Im gng to hit the baby shops and have a nice leisurely day browsing and spending. Eek
Thanks Clare. Hope you feel better and get to have a more relaxing day too 😚 x
Love the photo. Love your attitude. Glad you are feeling better
Thanks so much. Off shopping soon, just feel so energised 😆
Amy is gorgeous! Enjoy your weekends with her. My son is here this weekend visiting from Atlanta and I know the happy feeling❤️
Ah thankyou. Its lovely isnt it. Quality not quantity I guess. You enjoy your weekend too 😚 x
Awe she does look fifteen♥️Glad you feel better Josie. Being a grandma is such a gift- no words can express the beauty of a baby grandchild. When is due date?
♥️
Thankyou. I really cant wait. They actually brought their plans forward for me - they havent said as such but I know it is. Makes it all the more special - not that Im planning on gng anywhere soon. Due 27th Feb so a little while yet but it'll go quick Im sure. Eek. Xx
Hi Josie, so glad you are feeling more yourself. Amy looks lovely and so pretty and what a joy for you all awaiting the grandchild. Lots of hugs, Fay
Thankyou so much. V excited. X
Glad you are feeling better. Your daughter is beautiful.
Ah thanks. She's a delight 💖 x
Thanks Sandra. It really is so much better for Amy. There's 3 people doing the job I tried to do for so long. Everything is tailored around her needs and wants. She gets up around 9 and thats it she's off. Out by 10.30 and usually doing something all day - horse riding bowling swimming zumba - way more than I could do with her. I just feel a bit guilty sometimes when shes gng back but its the right thing all round.
I feel great at the mo health wise and Im off baby shopping in a bit. Hubbys working today so Im gonna have a nice leisurely afternoon when Ive dropped Amy off. So happy and excited. Bought the pram last week. Saving it at mine in spare room. Left it set up so son in law can have a look, just covered in a sheet but yesterday found the blooming cat sat in the basket underneath 👀🐱. Scooted him out quick sharp - think I'll keep that from Lucy , she'd have a fit 😆😅.
Right Amys up! Best get my skates on. Hahaha. Take care. X Josie x
A lovely pic Josie! ...You’re a great mum and will make a wonderful grandma (albeit a youthful one ! ) .
I’ve had my daughter home from uni for much of the Summer and will miss her when she goes back in a few weeks time ... we’re having a last minute coastal break to Northern Ireland next week and seeing grandad while we’re there .
Keep up the positive spirit! x
Ah thankyou for your lovely words. Not so sure about youthful but I'll glady take it 😆. Aw student life 💕. Has she brought you all her washing 😂. Ireland is defo on my bucket list. Ive been wanting to get there for ages and never got around to it. Have a lovely break together making precious memories 😚. X
You sound great. It is awful how exhaustion is not only physically but also emotionally draining. Your daughter is lovely. So glad she has great care and you are not alone in caring for her 24/7. She has a beautiful smile and sounds like a gorgeous handful. Enjoy baby shopping!
Thanks Nancy, it's true, it is very emotionally draining. Even when she's sitting watching TV (not very often) she never sits still, she rocks and jumps up and down all the time, it's very very tiring just watching her and constantly having to contain her. Not to say wearing on the furniture - we go through more settees and beds. soooo many baby things to buy, I'm having to keep a check on myself land not go silly. Just bought a few little cute unisex items as she's not going to find out girl or boy, she wants it to be a surprise. x
Oh go silly. It’s a sign of pure joy 🌈
She is beautiful! I wish I could remember the name of the ice cream store or at least what city they're in ... I'm pretty sure it's Texas ... anyway, this man who owns this chain has started hiring special needs people to work there. He has made everything "autistic friendly" even down to the cash register telling the worker how much change to give out. I will try to find the link and add it here. It is so amazing coz these "kids" have so much love and do such a good job, and the main thing is, it gives them a sense of worth to have a job and be able to provide for themselves. Have you seen it on tv? So glad you are feeling better, praise God! <3 xo This makes me want to come out of retirement and open an ice-cream shop! I would weigh 300 lbs. as I love the stuff <grin> Here is the segment I was telling you about, just found it! maybe they can do this in the UK!
dfw.cbslocal.com/2018/03/05...
oh wow this is amazing! and zero turnover in staff in 2.5 years! I think all employers should take note! I managed a young man with autism for 3 years and he never had a single day off work, he needed support to learn new tasks but once he knew them, he would follow every process to the absolute letter and woe betide anyone who got in his way lol. It was a fantastic partnership between us because I obviously had a very sound understanding of how literal and ritualistic he needed things and in turn, he trusted me and he absolutely flourished. It was great.
I love the name too Howdy Homemade, it even sounds friendly. Thankyou for sharing that, it's a lovely read. Definitely gives them a sense of worth. Where Amy lives they're building a little cafe and are going to open it to outsiders. The residents that are able to will have little jobs. i think Amy will be good at setting the tables and definitely clearing away - although she does that at home before we've even finished lol. She'll whip your cup or plate away to the sink if you're not watching because she can't bear things being out of place. That's fine but if you've still got food on there, she'll shove it in the bin hahaha, tinker.
Here's hoping we get a Howdy Homemade in the UK soon then :).
Thanks and best wishes. x
I hope so, spread the word! God bless them each and everyone, so precious and really a hidden treasure for employers as you mentioned! <3 xo
That is awesome! They should open these shops everywhere. Such great, loyal, joyful workers.
My first "real" job was with special people at Easter Seals in Waterbury, CT.
Loved every minute. Worked with physically and mentally challenged kids and adults.
They were joyful, wonderful people and taught me alot. Especially not to take anything for granted.
They never complained and were always happy.
What a gift that job was!
Your story about your daughter made me smile. She is beautiful and one can see her energy and spirit just looking at her. What a smile. So glad you have made decisions that clearly bring her a very happy life. Enjoy every moment of prepping for the new baby!!
oh thankyou for those kind words, it means a lot. I do worry about her living away because you hear awful things sometimes and she's not able to tell me if someone was hurting her. there's more than just verbal communication though and I always watch for signs of her being unhappy or crying when she's going back and there's never anything like that. IT's a very homely place where she is and I've got a really good relationship with them and if I have any concerns at all, I am able to go in and see them. I'm always welcome to drop in any time too which I think speaks volumes. If I was having to make appointments I think that would worry me more. Definitely enjoying prepping for baby, it's all new and exciting. Thanks again. Best wishes. x
nanny cam maybe for your peace of mind? just a thought .... xo
She is absolutely beautiful. It can be overwhelming. My friend has a 28 year old autistic son. He was very overweight and although she did not work, she struggled to take care of him at home. He often would bolt out of the door of her home, but her neighbors were always around. Her husband and other two children were at work during day. They finally found a wonderful place in upstate New York. He lost almost 50 pounds because they kept their clients active doing various activities during the day. Her son loves the place. Her and her husband go up and visit him for every event, plays, school recitals. She said that no matter when they go up and visit him and take him out to eat, he only wants pizza. He loves the group home. We can learn from them and our lives are enriched. You certainly have a lot to live for. That is the key I believe, Keeping oneself so busy with life that cancer becomes a part of it, but not the whole. And a new grandchild coming. Life is still good, remember that.
ah bless him, he sounds like Amy with the food. She eats certain foods when she's with certain people, strange as that sounds. It's hard to admit, but as parents, we can love them more than anyone else, but we can't always provide what they need as much someone else can. I've reconciled myself with that now but at first I felt guilty, heartbroken and sad. Now I've learned to enjoy the quality time I have with her. Cancer is definitely taking a back seat at the moment. I'm back working, like you say, a new grandchild on the way, Amy every weekend and jaunts with friends booked into next year. I just need to find time for my husband and I'll be sorted hahahaha. Meh, he's fine, probably glad to have me out of his hair - what bit he has left from all the worry we cause him hahaha.
My friend struggled with the idea of putting him in a group home with others but it was getting harder and harder for her to do it alone. They looked at so many places. But he is so happy there and they attend every event they have and he comes home for the holidays. She also had her elderly mother living with her (her Mom was 100) so it was too much for her. She said though once she seen him lose the weight bc they kept them active and how happy she was, it was a burden lifted and she no longer felt guilty. You are doing what is best for the child. He has two siblings who are now adults and my friend knows that they will always look out for him.
Enjoy your beautiful weekend!
Thankyou. Amys gone back now and I'm home from shopping. Just having a little rest then making a yummy roast chicken dinner with lots of lovely green veggies, keep my strength up :).
I'm glad you had a good time with Amy, Josie. I just had my tea, but yours sounds mouthwatering! I think I am going to have to gatecrash next time you are making a Sunday roast! I'm going to see my brother tomorrow. I normally pick him up once a week and either take him to work with me, go home for lunch, go for a walk or run errands. I try to change up whatever we do together. He is always pleased to see me, so I suppose that means he is not bored in my company! Like Amy, he is non-verbal, although he is actually a selective mute, as he used to speak as a child, but stopped as he grew older. He understands everything you tell him and is bilingual. He will sometimes speak if you prompt him, but he prefers to remain silent.
Sophie x
Oh wow bilingual. Clever cookie. I find autistic people really fascinating, all the little rituals and quirks they have. How fabulous that you can take him to work with you and I bet he loves all the animals. Now theyre all older and Tim can drive, Amy's started going out regularly with her siblings too and she loves it so I bet he's the same . Amy wraps them round her little finger and gets spoilt, usually ends up with a new DVD or book lol. Is your brother the same with you?
Yes Im looking forward to my roast. Love a good old M&S rotisserie and their stuffing. Roast carrots n parsnips too - like Christmas haha.
Have a lovely evening. Its quite chilly up here in Yorkshire, and v breezy. Xx
Both of my brothers are autistic, with learning disabilities. They both like animals. They used to go horse riding as children. They are both very neat and tidy and will quickly spot a piece of fluff that is out of place or clean up a spill from the floor. I think I need to hire my middle brother to clean my house, as he absolutely loves to clean, but I think the cleaning gene must have bypassed me! I spent the afternoon cleaning, which was not much fun. I should have asked my dad if he could spare my brother for an hour or two!
My brothers like to be with me, but I have always been the disciplinarian (even as a child, although I'm the youngest) so no one gets away with anything on my watch. When I stopped by my middle brother's day centre recently staff complained that my brother was refusing to take a shower, but he immediately went over to his locker to collect his things when I told him it was time for his shower. I find that a lot of care staff offer too many options and are too soft. "Would you like to do this?" and so on. With the legislation the way it is they have to offer options, rather than give orders or appear to be dictatorial, which I can understand. But things have swung the other way now. I told them there's a way to get my brother to listen, and it's to say something like: "You have just gone swimming. Now it's time for your shower". It's pretty logical and simple in my book.
I wish the weather had been cooler here today. It has been another hot day for us here in Suffolk.
Sophie x
Ah that's so funny because as much as she gets spoilt in one way, Lucy can get her to do stuff too. Lucy used to work with adults with autism and can handle the behaviours really well. The legalities these days are ridiculous. Common sense has gone out of the window. I feel sorry for the carers because their hands are tied in so many ways. Eg lets them throw tea away but if they then choose to have cake they can do. Well Im sorry,and I know they are adults, but Im afraid Id be saying no to the cake. Not all the time, obviously you have to respect they are adults but Amy would eat nothing BUT cake. Id do the first tea, then cake similar to your scenario . We use 'first and then' all the time.
Yeah I have friends in Bournemouth and they said its lovely down there. I wish it was warmer lol.
Josie x
Lucy sounds like me! I used to work for the NAS for nearly two years. Honestly, I would not go back to it now. The laws really are ridiculous and misapplied in some cases. We called a meeting recently because staff were letting my brother choose cake, chocolate, fizzy drinks, whatever he wanted, even though the dentist and doctor have said no. I have been telling them no for years too and they used to respect my wishes until these laws came in that said let them have anything they want as it's their "right". I pack his lunch Tuesday-Friday (he eats out at his volunteer job on Mondays) so he shouldn't need to buy anything else.
They sent me a copy of the Mental Capacity Act, which I didn't read. My brothers do not have the mental capacity to just stop at one serving. My middle brother would eat a whole cake if it was left in front of him. But staff said they could not even say no to a diabetic, at which point I told them this was ridiculous. I offended one of the support workers, but what she had said could have caused serious damage to a diabetic. So I was dreading the meeting, but it was actually really positive and staff were not fighting me for once, but took my ideas and suggestions on board. When did common sense go out the window? One member of staff even said she has a child with learning disabilities and says no at home, but isn't allowed to at work.
Right, rant over! This topic just really gets my goat.
Sophie x
P.S. You can have my weather tomorrow if it's hot again. I don't like it!
Yeah and when the cakes gone and the diabetic has a hypo then they get done for neglect. Crazy crazy times. Xx
Yes, you're right!
You go girl! Glad you are feeling better. Amy is beautiful. Enjoy your quality time with her.
Thankyou. Im even having a cleaning blitz on the house. Dont know what's come over me but its good whatever it is 😆 x
I am hoping that the same happens to me today, Josie. I hate cleaning! I need to get in the mood to clean. It will have to wait for today, as I am off to work soon.
What a lovely sun kissed day! Enjoy!
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