ASD teen

[Hen2018]

Son (18) with ASD and severe selective mutism. He was out of school for year 4 (excluded about 10 times), short stay school year 5, ASD base years 6-11. Also out of school entirely for half of year 11.

Huge fight with inept council through years 12 and 13 ending in a tribunal to get him into a local independent special college.

It’s crap. I try and remain positive as he only has to stay until he’s retaken his GCSEs. I’ve filled in my bit for his EHCP later this month and I can’t bring myself to post it in. I can’t put more than a line or 2 for each question. He’s averaging about 4 hours a week attendance. Teachers forget to go to the lessons with him (everything 1 to 1). He loathes it, and takes this out on me, I just cannot explain to other people the total and utter disinterest and fudging the issue I face if I try to raise anything with college. e.g I suggested he do some work experience in IT and they said, “oh yes, get it arranged - you must have a lot of contacts in IT”. I’m a sole parent and the last evening out I had was in 2015. No one has visited me yet this year. I can’t really leave the house for long if my son is here. I don’t have any “contacts” at all, let alone in IT!

We had a zoom meeting with county (college staff and I) and everything was glossed over. College said his attendance was 60% but I then had to point out it was 60% of a part time timetable plus they hadn’t counted days off for anxiety. I think his attendance turned out to be about 9%. I’ve asked repeatedly for teaching at home.

At home, he’s rude and obnoxious and I have no bargaining power at all. He will only leave the house to go to one branch of Tesco. He hasn’t seen a friend for 3 years. He can’t answer the door or the phone. He hides in his room if my brother or a builder or anyone comes round. He gets rough if you stand in his way. He doesn’t leave the house or exercise at all so has put on a lot of weight.

I’ve asked everyone I can think of for help. Social services signed him off immediately as my parenting was fine. He had a mentor but he wouldn’t talk to her (obviously!) so she stopped coming.

I asked my sister for help yesterday as even the general running of a house is wearing me down after 17 years by myself. Any help would do. She says my son doesn’t respond to her messages. I looked on his phone and she hadn’t messaged him for 7 years! I should leave him by himself and have evenings out (with whom?) and go on holiday without him apparently, and make him move out.

I feel stupid for mentioning it now and ten times as bad as before I asked.

And he has all the signs of PDA so will twist and turn and argue for hours to get out of the most simple tasks. It sounds pathetic to say I can’t get him to do 10 minutes of homework or make a cup of tea, but I can’t.

In fact, my aim at the moment is to get him to make us a cup of tea per day. I haven’t managed this for the last 2 days.

Also, college phoned last week to see what I had chosen for my son once he leaves college. Somehow, they think he is going to get a job (!)

I said i presume he will sit in my house forever. They laughed.

So that’s something else I’m going to have to think about.

Well, this is the usual response I get when I ask for help!

My son is 17 & sounds very similar.
Mainstream school was always grim & resorted to home education from when he was 8.
Also a lone parent with very minimal support.
Also struggling lately.
Suspect there are a lot of others out there too!
Not much help to offer, I find myself wondering how I have managed to 'keep on' for so many years & actually despair sometimes (most times?) now.
I cling to the fact that with the difference/delay in neurological development things shall, in time, improve.
No life has been my life for so long.
Wish I could help more.

@kabalarian

Good to hear from you!

I “snapped” earlier this week. My family ask me to do jobs for them quite often. Easy, short jobs and nothing out of the ordinary. But they do nothing back.

If I ask for help, they are “too busy” or they forget or simply say what I need help with doesn’t need doing or I can do it another time.

I’ve had one evening out since 2012 because they’ve decided my son can look after himself.

The requests keep bloody coming and I’m getting resentful. This week it was to help out on a stall at my sister’s child’s school. She has never been to a single concert, play, fayre, meeting (I’ve probably been to a thousand school meetings!!) over 2 decades connected with my children.

I said no, and that I was not helping family members for a while as it was so one sided. I’m also really quite ill this week with some virus thing (not that one!)

Since then I’ve had another text asking me if I know where to find a tombola (!) then a fawning text from my mum saying she will come to the school thing with me. I’M NOT GOING!

So my life continues, with no one interested that I’m running a house and a SEND teenager, driving to college for him, cooking, cleaning and everything else whilst retching and (twice) fainting.

No one is in contact with my son, no one makes any effort whatsoever.

I’ve got an EHCP review on Wednesday with a college that hasn’t implemented anything that was listed. No family member knows or would think for half a second that this might be worrying.

ENOUGH!!!

That sounds unbelievably frustrating, I’m glad you pointed out to your family how one sided it all is, whether they listen or not. It sounds like they don’t really get that he has ASD and are acting like you’re the parent of a NT teen.
What’s worse is that the college, which is meant to be helping and equipping him, is so useless. Do you know any other parents of children /teens with autism in your area? Is there a support group or something you could join? I just thought that since your family aren’t getting it, it might be good to have people in your life who do, some solidarity. And maybe they’ll have some good ideas as to what you can do. Is there some way you can complain to /about the college, would that help?

@Hen2018 Your situation sounds dreadful. The various authorities etc who should be supporting you are seriously letting you down. Is your gp any help? You mention PDA - have you considered if your son might have OCD? OCD can present in many different ways. Is he on meds for anxiety?

Also- it’s not hands on support but have you found any Facebook groups for parents of children with selective mutism and/ or Asd and/or PDA? I belong to a great one for parents of children with ocd and also another one about Parenting children with mental health issues. I am surprised how good they have been .

Does DS have OT in his EHCP working on independence skills? And specialist SALT for the SM? And MH therapies?

Has DS had a social care assessment? And you a carer's assessment? This is not about your parenting it is about DS's disability.

Have you thought about another specialist college (there's a regular poster on here whose DS's life was turned around be attending one, so they aren't all bad), supported internship or EOTAS as a next step?

If College aren't delivering what is in EHCP and section F is specific and quantified complain to the LA as it is them who are ultimately responsible for ensuring what is in the LA is delivered. If it persists threaten to begin Judicial Review proceedings, and contact SOSSEN for help with a pre-action letter if necessary. Sadly if section F is woolly and vague it can't be enforced. If DS cannot attend college due to his SEN the LA must still provide what is in section F.

Lots to unpick here, so apologies if these sound like stupid questions:
-what are the issues with your ds being left alone in the house (not safe, heightened anxiety etc)?
-if he doesnt like college, what would he like to do (learn at home, work experience etc)?

• what do you want him to be doing in 5 or 6 years?
• what does he want to be doing in 5 or 6 years?

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