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To ask someone out there to give me some hope?

(8 Posts)
Longwalkoffashortpier Fri 01-Dec-17 22:54:04

Message withdrawn at poster's request.

Bodear Fri 01-Dec-17 23:08:57

I have no experience of this but didn’t want to read and run. Hoping this will bump for you. You sound like an amazing mum.

StillMedusa Fri 01-Dec-17 23:29:29

Ok... at 4 my DS2 was non verbal (totally) and sat happily flapping his hands or lining up crayons, drooling (like a bulldog..it was awful) . Happy, could be left with anyone, as he didn't distinguish between family and strangers. Went to special school.

He's 20 now. Spent his school life in a lovely special school. By 6 he was talking, but incomprehensible to 99% of people... by 8 or 9 he was a bit clearer and had stopped drooling. At 10 he learned to read.

At 20, having done with school, and special needs college, he is now working part time at Asda, where he is loved. He can go into our local shops independently, walks to work (3 mins away) by himself and can catch one bus by himself. He has two friends, who he sees quite regularly and now arranges it by himself, on a phone!

He is still lining up pencils, chews through all his clothes (he has eaten his work lanyard grin ) He is still autistic and always will be. He has his obsessions (Asda and musicals ) and has a rainman memory, but needs help to shave, to put a coat on when it's cold, and needs lots of support in daily life.

BUT he is a million miles from the little drooling flapping non verbal 4 year old. He is funny, he is kind, and is still learning skills every day. He doesn't 'get' a lot of every day phrases, but he asks. He doesn't understand jokes but is beginning to understand that they aren't scary.
He has a bloody job!!!!!

If someone had told me this, when he was 4 I would have sobbed..or laughed hysterically...and not believed them.

But it's not just my DS2... I have worked with children who have autism for 14 years and you can never tell the future. One child who used to be in my class.. non verbal, pecs user, recently took his GCSEs in mainstream! Not everyone is that lucky (my DS2 isn't 'able' like that) but children can and do surprise you. The fact that yours HAS language even if he is not using it yet to communicate with people, is great.

And without sounding tooooo soppy, I can honestly say that DS2 has made our family who we are. I was devastated when he was diagnosed, but he has enhanced our lives (though I do worry about what will happen when we are gone as I don't want his siblings to have to care for him).

Hang in there!

Moanyoldcow Fri 01-Dec-17 23:42:50

Lovely post Medusa.

Newinthegame16 Fri 01-Dec-17 23:51:02

Sorry no experience here but wanted to say @StillMedusa what a lovely, inspiring post and I hope OP that was just the positivity you needed. Both sound like you're doing an amazing job

Animation86 Sat 02-Dec-17 00:06:30

When my daughter was 4 she had no words. She has autism and had a grade 4 brain bleed due to being born at 27 weeks. I think we got off lightly considering.

She was in mainstream nursery and we used Makaton a LOT. After some worrying and confusion we agreed we’d TRY school , at least for the first term til Xmas.

Let me tell you, when we got to that Xmas we were all in disbelief. The education psychologist said she did think it was possible my daughter would have need moved to a special school. But she had began talking. It was incredible, like day and night. The makaton began to drop over the years and the scripting is becoming her own words.

She’s now 8. No one can believe how different things have become since those days where we lived on PECS and Makaton.

Caroelle Sat 02-Dec-17 00:09:33

My friend’s son with ASD is 22. He was her first but she knew from early in in his life that he was different. She had to take him out of his first school because he was so unhappy. 17 years ago it was difficult to get a diagnosis for ASD, she fought long and hard to get this and ended up transporting him to different schools until he was 18 because he was statemented. Along the way he has had mental health issues and been very difficult to live with. He graduated this year with a good degree in computing and game design. He lived in halls and independently when at uni. His grandmother developed dementia very quickly and he has helped to care for her. He is a charming, if quirky, young man. Another friend’s son was also diagnosed with ASD. When I met her they were planning to extend their home because she could never see him living independently. He was aggressive towards his parents and two younger brothers. At one point the only thing that kept him calm was the washing machine spinning. Within 6 years he had left school, got a job and then started travelling. He has been around the world, comes home, works for 6 months and goes travelling again. I hope this helps.....

venys Sat 02-Dec-17 00:29:47

Not so much in the future as others as my boy is 6 and has Global Developmental Delay. At 4 he was at a specialist nursery, and to start with pretty non verbal. Soon after 4th birthday, had tonsillectomy and started talking and sleeping quietly and we'll through the night. He was doing so well at nursery, he then went to mainstream school with a unit for moderate learning disabilities. These days he is able to read as good as his peers, still finds it difficult to write, so does his spelling tests on a laptop. Finally doing arts and crafts. He still has his Disability but is quite a different boy from two years ago.

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