ASD and severe learning difficulties and progress.

[CwtchesAndCuddles]

DS 4.9 was dx with asd and severe learning difficulties a year ago but we had a diagnosis of GDD with autistic traits when he was 2. Statement was issued a year ago and he has a place in the county special school for children with sld/pmld, a high percentage of the children have ASD and the school is fantastic, ds is in a class of 7 with 5 staff, one teacher and lots of very experienced support staff. SALT is onsite, he had hydrotherapy and reflexology in school and loves it there.
When he started he was virtually non verbal and very clingy to me - now he can't get there fast enough and his language is vastly improved, he is coming out with new words and phrases every day now and we are very pleased with his progress.
He's doing really well so I don't know why I'm feeling a bit down...........
he has no concept of time ie now / next
the world revolves around him and his needs
no sign of being ready for toilet training and still smears sometimes

I read lots of post here from those with children with ASD who are in mainstream and can only dream that ds will reach that level, I often sit and wonder how much progress he can make and wonder how much of his problems are caused by the ASD and how much by the learning difficulties. He seems words apart for his NT peers.

That said he is a wonderful happy littel boy who lights up the room!

Anyone know where I'm coming from?

Not going through what you are but thought i would post to let you know what its like on the other side , My dd2 is 6 and has ASD and severe langauge delay (lots of communication problems), she is in MS as other than her communication problems she has no LD's (apparently), she is doing well at ms but as she gets older her problems are more noticable and the gap between her and her class mates is getting bigger. Everything is such hard work and we have to fight for the right support (the correct amount of 1:1, the correct amount of time for physio etc..etc..). At times i wish she was at sn school as then i could relax a little knowing she was around others in similar situations and around expereanced staff. At the moment everyone agrees that ms is the best place for her but i'm not so sure.

Dd2 has changed a huge amount over the past 3 years (2 years ago she was non-verbal and non-responsive), i never thought she would get to this stage tbh (never thought she would read, write and do maths). All i can say is 'never give up hope as anything is possible'.

Severe autism with few words means assessing learning potential and/or IQ estimation is next to meaningless... the lack of "first-then" stuff makes life really hard though. Do school know this concept is your absolute number one priority to help his learning and home life?

And btw, log all the fantastic stuff the school need to do to keep him progressing at such a great rate. It would be a shame for him to 'become' MLD and be transferred to less intensive schooling before you've seen where his true potential is.

Yes, I think I do know where you are coming from. The world of special needs is an extremely broad one and to have a child with severe learning disabilities is to be in a minority within a minority. I always feel like I'm not only in a parallel universe with mainstream life, but also quite removed from the majority of parents of children with special needs and removed from many posters on here, which can be really hard. DS's behaviour is challenging, which makes everyday life especially difficult and we have been pushed to the limits as a family.

Over the years, I have learned to compartmentalise my life, rather than expect life with DS to ever be normal. I tend to share my disability issues with a few other parents in the same boat and not try to force others to understand - if I had not had a disabled child, I think I would have struggled to 'get it'. On the other hand, I also try to have as much of 'normal' life as anyone else, and make sure I don't become entirely trapped in SLD Land. This has only been possible with respite.

It's still early days and I know it's a cliche, but time is a great healer and how you feel will probably change over the years. Hang onto things you like to do and try to get the space to be you.