Published on 12, July, 2020
Hi everyone
Hope you're all well? I'm laid up with my back again so am taking the opportunity to research as much as I can for Dan (16) my middle son who was diagnosed with autism in December.
CAMHS are at the point where they will be discharging him, as in the psychiatrist's words, they don't take them beyond diagnosis. We are lucky in that the OTs at CAMHS want to do some work with him first so this gives me a chance to ask around as to what I need to access for him next?
Dan has a Section 139a in place for college so that is covered, although college are not receptive to any input from CAMHS and myself and his progression coach has even told him CAMHS are wrong and he doesn't have autism (?!). CAMHS have suggested moving him but that's difficult as he also has dyslexia and that's holding his English achievement back and there are no other courses available for him without his Level 1 English. That's by the by, I think I know how to handle that but it's other things I'm worried about.
Dan has quite severe sensory issues surrounding noise and touch mostly (as well as chewing and sensory seeking behaviours that I haven't managed to pin down yet). He has not had a full sensory profile done so cannot be diagnosed with SPD, which is what the psych feels he probably has (his cousin has Asperger's and SPD). They don't do sensory profiles at that CAMHS, but I am pushing for some form of recognition of the level of sensory issues he's facing, so that's another bit in hand and just about covered.
One of Dan's friends (I use the term loosely as Dan does not understand friendship in the slightest) has moved out of home and into a flat with his girlfriend, and rather daftly offered Dan the spare room. Dan came home with the intention of moving out straight away and obviously this was a bit of a scary time. We have managed to talk him out of it and to say we will support him in getting his own place at 18. I feel he won't be able to do that in an unsupported tenancy and CAMHS agree.
Dan is very socially naive, believing anyone he meets is immediately his friend or enemy. This has led to him going off (albeit drugged in a drink by a stranger) with people to a remote location where he was held down and burned with lighters, then beaten up and dumped in a pond and left. It has also led to him shoplifting, when these "friends" told him to "hold their beers" while they all walked out of Tescos and Dan was caught. Dan didn't have a diagnosis so has a low level record for that, which they said he wouldn't have got had he got the diagnosis before then as for that level they can take into account mitigating circumstances. He also has a history of running away to strangers he met on Facebook on his "friends" phones. These incidents are a year or two in the past and he has been safe for over a year now, after a breakdown in late summer 2012.
CAMHS are planning to do some work with him and an OT in college, working on social skills, recognising emotions and seeing if he's capable of some level of aspirations (he has been shown as not being able to plan for the future and only being capable of thinking in the past and the present). They are also going to help me learn more about his sensory needs and to raise his sense of safety. They are going to educate the college tutors and also give Dan some hypnosis and NLP to work through his post traumatic stress.
In light of Dan's needs, and despite me being ever so grateful for the OT help, we are looking at Dan being off their books within 12 weeks and I don't know who to go to after then for support, eg. to plan supported housing for him when he decides to move out (never I hope), perhaps helping me get him some independent living skills and more time out in the community (he stays at home mostly). I'm also not sure I can plan his future around college and work alone as I don't know what's available. We went to Connexions but they wouldn't research alternatives for him as long as he says he wants to stay at the college, even though college want rid of him and have asked us to find him an alternative.
I went to a kindof convention recently where parents of special needs kids spoke of individual budgets and the likes and it all went a bit over my head. I'm guessing we won't be entitled to any of that for Dan as we muddle along without any outside help, but that will change when he leaves home and I really don't know what to do to prepare for that.
I would really appreciate any thoughts or experiences you have on older teens and support after CAMHS.
Thanks
Kathy
xxx
Hi everyone!
Thank you so much urspecial and IntenseWorld, you are both lovely.
College wise everything hit the fan yesterday because Dan had a meltdown at college and staff handled it badly. He ended up in a real state, but he's ok now, although they have suspended him for today which I'm not happy about. Took him 5 hours of rocking in foetal position in bed to calm down. I was foaming and have made a formal complaint, very much in depth and holistic in that it includes all our concerns about what's happening or not happening there. They didn't even ring me and then when I rang them, the things they said were pretty abysmal. There's another autistic boy who was involved and he calmed down and apologised so if Dan "really has autism he has no excuse not to act exactly the same as him". "It's totally ridiculous that he's scared of Malcolm, he's not an ogre and Dan has no excuse for pretending to be scared of him to get out of trouble", "Dan should act exactly like everyone else", "Dan is lying about a section 3, there's no such thing, I don't even know how he would've come up with that" (and then going on to say he may get a Level 3 disciplinary - hello, that's obviously what he meant!). Accused him of lying to me about a certain boy being present as he's no longer a student, despite knowing he was there and teachers have confirmed it, AND Dan didn't even tell me he was so wasn't lying at all. It was just awful. So it is all in the complaint and it's a formal complaint.
He's had a full OT assessment, which was really good and in depth. Really grateful for the SS advice and for the 139a extra bobbins advice as his consultant paed wants him doing extensive daily exercise to lower his anxiety and hyperactivity levels, which he was doing before Christmas as part of his course but is now down to twice a week. He stays in most of the time outside of college, so we have been hunting down things he might engage in.
Managed to swing him a placement in a football coaching club on a Friday afternoon, and (because they know he wants to coach) they've said they're looking for two of the students to be picked to do a coaching award through the NUFC foundation. That's a big deal! Dan's very excited!
Sorry this is compact tonight, I must have repetitive strain from that email complaint. I'd copy and paste it in here but it might crash the server, it's that long haha!!