Chat for ASD families

[13lizanne]

I've recently discovered that there are quite a few posters here who are parents/grandparents of young people on the spectrum. If this is you please join us for a chat and encouragement. My 27yr old son is at the extreme end of the spectrum, non-verbal and needs help with everything and 24hr care. I've had type 2 diabetes for 10yrs. Please introduce yourself and we can support one another
Anna

 

[hankjam]

Hi Anna
near same here, 22 year old son, non-verbal with very low self-motivation. I've diagnosed a T2 for nearly two years.
Life goes on.... it's a wonder how sometimes.
Hjx

 

[13lizanne]

Do you have any organised respite?

 

[mo53]

Hello everybody. I just wanted to say that I had read the posts on type 2 life and thought how good it was that you could share your experiences of your children with each other. I think this thread is a brilliant idea. Good wishes to you all.

 

[hankjam]

Do you have any organised respite?

No, we've never really been that organised or found anything from local SW that felt right, it's something on the "to do" list..

and you @13lizanne ?

 

[13lizanne]

Thank you so much @mo53

 

[13lizanne]

No, we've never really been that organised or found anything from local SW that felt right, it's something on the "to do" list..

and you @13lizanne ?

We had nothing until our lad was 17 then we were given 2nights per month down at Clannalba the respite centre run by Scottish Autism However last year I was very ill for 5 months with septicaemia contracted during surgery and our son D stayed there for that length of time. When I recovered my husband and I agreed to D moving on to a 24hr supported flat nearby, we still see him lots, take him out and have him home for meals etc He would still have been staying with us but for my illness, I was in and out of high dependency unit and we had no choice but to agree. Our lives have changed quite dramatically and I miss him but he seems to be happy enough in his own way. Sorry for the length of this post, that's enough about me! Off to bed now but I hope everyone will post with their news soon.

 

[Diamum5972]

Thanks for starting this Lizanne, I have a 22 year old son with Aspergers and I was diagnosed Type 2 in October last year. My son also suffers from depression and anxiety and has occasional panic attacks. Despite his difficulties he has a good circle of friends from his last college (a specialist college for students with disabilities) and they will occasionally descend on our house for PS4 parties DS also belongs to a drama group at our local theatre and has performed there every year for the last 8 years, including Shakespeare's The Tempest last year He is currently studying BTEC level 3 Media but his course finishes in July so we're frantically looking for an apprenticeship for him.

 

[13lizanne]

Oh I do hope that you find something good for him, have you tried the National Autistic Society for information on employers who are understanding of your lad's [dis]abilities? Your boy sounds very artistically gifted

 

[13lizanne]

Hi @hankjam I meant to say last night, have you tried Scottish Autism they have a family worker and could send you information on Clannalba if you and your wife would be interested. We found them very very good, nothing was too much trouble and our lad seemed to enjoy it [most of the time]

 

[Kat100]

I've recently discovered that there are quite a few posters here who are parents/grandparents of young people on the spectrum. If this is you please join us for a chat and encouragement. My 27yr old son is at the extreme end of the spectrum, non-verbal and needs help with everything and 24hr care. I've had type 2 diabetes for 10yrs. Please introduce yourself and we can support one another
Anna

Hi Anna
Can't contribute to your post .. But what a great thread to start ..it's very valuable support ..
Thinking of you and your families and send you my best wishes .. Kat ..

 

[13lizanne]

Thank you so much @ Kat100 appreciate your good wishes.

 

[Diamum5972]

Oh I do hope that you find something good for him, have you tried the National Autistic Society for information on employers who are understanding of your lad's [dis]abilities? Your boy sounds very artistically gifted

Thanks for the idea, I hadn't thought about them. It is possible that he could get a job in the arts, he's got some good contacts at the theatre. It would be a good backup plan, they advertised a couple of apprenticeships last year but I don't know if they would have any more this soon.

 

[13lizanne]

Sometimes here in Scotland firms register their interest in employing people with ASD I wonder if there's anything like that in your area? Do you have a family worker or advocate system in your area @Diamum5972

 

[Shar67]

My son is 26 has Aspergers and is a qualified commercial airline pilot, we always tried to instill in him that he didn't have a disability but a unique way of looking at the world that he should use as a help not a hindrance. When he was young OH spend a very long time teaching him to look at people in the eye when speaking, we called it the don't eyeball me mate game, it took a few years but he managed to get to grips with looking at people, he also spend most school holidays at speech therapy school, where he met some long time friends, he had an education statement and went to a special unit within a main stream secondary schools, he could and did intergrate into main stream classes, he found out that the maths class he was in he wouldn't get a high enough grade to go onto A level maths which he needed to get into university. We were told that it was too late to move him up as he would be so far behind, we argued he could catch up and won, he did the course in 5 months rather than 2 years. When he did his GCSEs he got top marks for the whole school and the school's first ever A* results.
He moved on to Grammar school to do A level, then went to university and learned to fly.
Sounds easy, there were days when he was physically sick because he would be around people and had to interact, but he pushed himself to get out there.
I remember when he was in primary school the special needs teacher and headmaster told us he would "always be backward" told he would never be able to swim (he has dyspraxia) told he would never drive a car. Everything he has been told he wouldn't be able to do he has done and done it well.
I told him there isn't such a word as cannot, it was I can try failure is when you stop trying.
I changed from being a quite reserved person to being a pushy loud mother. I told education director at local authority I would visit her everyday until she agreed to educational special needs plan, ha she buckled same day, there was another mother there in tears as she had been told her son was not special enough, I got her a plan as well.

 

[13lizanne]

Thank you for sharing your son's story, you've had a "sair fecht" as we say in Scotland but wow what you've achieved together. Our children are at different places on the spectrum but everyone on this thread has had to fight for services our children needed- to enable them to have any kind of life, I'm so glad that your son has achieved so much

 

[4ratbags]

Hi everyone. My daughter 22 was diagnosed with Aspergers when she was 13 which was a relief to finally get a diagnosis as it had been 5 years of h### at school, she even spent one whole year shut in a small room by herself as she just couldn't cope in a classroom with others for more than a week. As she was our first child and we knew nothing about ASD we didn't realise that she had issues. Unfortunately she could be very violent and unpredictable which made it very hard on our other children. Our son 16 was diagnosed when he was two with ASD, Mobius Syndrome, and Speech and Motor Dyspraxia, thankfully he was totally different from his sister, he is really quiet and he loves computers which is great. Lastly my grand daughter (pictured in my avatar) has just turned 4 and she was diagnosed with ASD last year. She is very intelligent and just loves anything to do with numbers and art. She is full on and never sits still but she keeps us on our toes, she is my 22 yr olds daughter and we have had custody of her since she was 1.

 

[13lizanne]

Hi @4ratbags now we can guess why you chose your username it's humbling to read your post and see that you're looking after a second generation also. My proverbial hat is well and truly off to you X

 

[Shar67]

@4ratbags well you don't do anything by halves, I too tip my hat to you, ASD never seems to travel alone it always seems to be accompanied by something else.
@13lizanne, lol I'm Scottish it does help here in Englandshire to come over all Scottish when fighting your corner, no one seems to want to fight anymore.
My son's hand writing is pretty poor we came to the conclusion early on that it wasn't worth the added pressure to concentrate on that when other problems were more pressing, school were good on that score and he was given a lap top to do work.

 

[13lizanne]

That's the thing @Shar67 , isn't it? its about identifying what's important and what's not. Our son is classic Autistic with learning disorders so- doesn't speak or understand most language needs help with washing, toiletting, dressing, -everything really so we concentrated on devoting ourselves to taking him swimming and walking every day and useful things like drying dishes, vacuuming etc. We knew academic things weren't for him. Our other two sons are 14+16 yrs older than their brother so were a great help with teaching eye contact and turn- taking etc also, they were both off to uni when D got to the stage when he needed all of our attention. I honestly don't know how families with several young children manage when one has ASD How do you manage holidays?