Aspergers and my son - feel free to skim read or ignore :)

[OldTomFrost]

Hi guys,
I am the parent of a 20 year old with Aspergers - I read through this section of Mn regularly but never post as I don't feel I have a lot to contribute to those of you with younger children with special needs. I identify with a lot of what you are all going through and just identifying with it is a help for me. But since my son was little, the world has changed and I don't feel able to advise people on matters today when I went through them years ago. My advice would be very outdated.

I am posting today because yesterday, as a result of issues with my son and his college I suffered two intense panic attacks in a public place which both frightened me and embarrassed me. And I would like to get it all out of my brain, off my chest, before I walk out of my door today to actually deal with it.

My son has Aspergers quite extremely. And a Global Speech and Language Disorder. Those of you with a Dc with this can identify the situation so no need to pour over the details.
He has a gift with maths and IT programming and is studying this in college at Level 3 so quite high up on the overall courses they run, he is on the highest level before Uni. Unfortunately to get to Uni with it, he is going to have to re-sit his English GCSE.
He massively struggles with English, he was exempt from English Lit and all other languages at school and for English Lang had to have one to one tuition and more often than not lost his temper and got badly distressed or angry with himself, his teacher, those around him after the lesson.

I informed the college of his struggles with language when he went there. He spent 3 years previous to doing this IT course in the special needs dept of college so they could integrate him into college life as it was far removed from his special school.

On Monday I collected him from college and it was horrendous. The college had told him he was to have English on Friday mornings and they gave him no information as to who would be in class with him, if he had a special needs assistant, what the coursework would entail and if he had the special rules for the exam such as a small room on his own and extra time. They failed to inform me of this before informing him so I had absolutely nothing at my disposal to calm him down Monday evening. He was rocking back and fore, head in hands when not following me about the house with his head on my shoulder blades, sort of walking behind me as if I were shielding him. He spent all the afternoon and evening muttering and winding himself up as he only has bad memories of studying English. He kept saying over and over that he was in a panic and he can't go and I had to do something... I couldn't do anything other than try to contact the college - who have wholly failed to get back to me.
We didn't sleep Monday night.
Yesterday I got up and intended to sort this out but I was not expecting this to all happen and was not prepared for it - its been a while since we have had this sort of behaviour/reaction from my Ds. What with all the other things I had to do yesterday I completely lost it and in front of colleagues suffered two rather bad panic attacks. I think they were the direct result of watching my Ds fall apart and my being unable to help him to get over it.

I have to go to college today and attempt to talk to somebody about their lack of care here - they ought to have informed me first so I could inform my Ds in a quiet, calm manner at home with answers to his questions. I also need to know what provisions they have in place for him during this re-sit and warn them of his past behaviour while trying to learn this subject.

I am completely dreading it and while I am not in the place I was yesterday where I fell apart, I am slightly unsure of myself and my physical reactions after yesterday - so really, just wanted to get it all off my chest with like minded people, even if I garner no replies. So I am calmer when I leave here at 10am this morning. I have been up since 4am... Doing calming exercises and breathing techniques - like a complete twonk.
Thank you for listening.

How stressful for you when you have probably had years of sorting this type of thing out.

This is probably the result of complete lack of understanding and thought on the part of the college but we know all too well the damage such thoughtless can cause.

On a practical level, can someone go with you?

Or if you are too upset, can you write it all down and email it to the college before you have a meeting? This means you give them a chance to see your concerns and the discussion can be productively focused on what is written rather than the stress of you having to remember everything.

Think about what they need to know to avoid this happening again. They also need to know that this is not just you requesting things unreasonably, this is all standard fodder for supporting people with AS. Think about how you can work together and what your son needs. Get this written down.

They have duties under the Equality Act to make these reasonable adjustments for him, perhaps couch it in that language - ie, let's discuss what reasonable adjustments can be made, lets agree them and write them down so it doesn't happen again.

Keeping the lines of communication open are vital and they need to find a away of communicating with him and you in a way that avoids this occurring.

Hi oldtomfrost, I am sorry you and your son are going through this. Isn't it sad that after all this time the system is still failing and putting your son and others like him in these situations that they can't cope with.

I agree with IE about emailing, I also write notes for myself for meetings so that if I start to get flustered I can refer to my notes and get back on track.

You are the expert on your son, not the college. Make sure they understand that and then hopefully nothing like this will happen to him again.

Good luck .

I know the feeling, I had a similar panic, luckily it was on here.

Its hard when you see your ds so distressed, to keep things in perspective and stay calm/focussed 100% of time, especially if you are dealing with behaviour on a daily basis and/or over a long period of time. We are only human and keeping our emotions almost robotic for everyone elses sake is hard to maintain all of the time. As I said I had a bit of a panic on here, that's the beauty of MN, I can have a panic, talk it through and no one but the guys on here see it. So keep posting, it does help to get overwhelming situations/behaviours off your chest. You are not alone.

And agree writing it down really helps.