DS is 16 today - mixed feelings.

[NoHaudinMaWheest]

It is my Ds's 16th birthday today. For the first time we are not having an elaborate themed party so I am not up to my eyes making cakes and decorations and inventing games which have to be exactly right.

He has matured a lot over the last year and become more independent in many ways. However his OCD is still a major problem and now that he has hit the 16 point my fears for his future are becoming more acute.

At the moment it is only minor things that are changing - new bank account, his own railcard, adult bus fares. He will be in school until July and I'm sure that I can sort a good 6th form place for him, but what happens after that?
Will he manage university, a job, a partner. Will he manage to live independently? DH and I are both over 50 - what will happen when we are not longer around? He is much to able for any adult care services I know of to be approriate.

If he still needs mental health services as a adult, which is quite likely, I dread him being at the mercy of what seem to be totally inadequate provision.

Sorry just venting. I'll go and make his (straightforward) cake now. At least he is healthy and in a good school.

Ooh

Ds also in last year at school... Hes a young one too... Not 16 til the summer.
I have thought all of those things recently too.
I need a kick up the arse actually to get myself sorted with his post secondary school stuff .. ( can it really be that time already? Doesn't seem 5 mins ago since I donned the armour for the secondary school transition battle )

I need to find out what is available locally in terms of support.
Good luck... You are not alone.

Oh and happy birthday to your boy!

Happy Birthday to your boy, I can't say much about this experience as ds1 is still young but we still have many sleepless nights over it. It only stopped when I saw a post from Mariama, I think it was her granny who said. "Don't let best be the enemy of good". I took it to mean enjoy all the moments you have now, focus on the present and the future will take care of itself. We can't control what happens in life after all. So bake that cake and have a lovely day with your family.

NoHaudin I am 60 and DS is 17 so know how you feel about what will happen when you are no longer there.
He sounds as though he is doing well. It probably doesn't do to look too far into the future.We have been amazed at how far our ds has come. At 15 he still had to hold my arm in a strange place. Now approaching 18 he is having driving lessons, which we thought would never happen.
His birthday is probably a time to congratulate yourselves on what you have achieved so far.

My son is yr 11 too, and the future scares me. He will go onto a special needs course at college in September (ASD and MLD) but then what?

Been told there is NO support for living unless his IQ is less than 70. No idea what it is but suspect it will be just too high. We know he won't manage independently, drive and prob not a job or a wife unless it is someone who also has LDs.

But...one day at a time. It's all we can do:) That and celebrate 16 years!!

Thanks for replies and support.

I guess it is because I am not making a Tardis cake, Dalek biscuits and devising a Gallifreyan alphabet that I am thinking about this today.

troutpout how far have you got with post - 16 thinking. I have done some research but am not in a quandary about what to do next.

Have no wise words to give I'm afraid, but just wanted to wish ds a happy birthday

Milestones can be very poignant. I hope the way forward for you all becomes clearer over the next couple of years.

Not far haudin.
He wants to do sixth form which means going to a new building.
Emotionally and socially he's more like a 12/13 year old . I think 6th form might be ok ... But 18 is kinda scary😔.
Have got some local lea funded support group sessions coming up. I will ask some questions and find out more.

I work at a uni, and there has been a significant increase in young people with disabilities graduating, including those with ASD, OCD, ADHD and mental health issues.

Many unis have good support systems in place and will help with transition. If a gap year is taken, we encourage lots of visits and arrange for them to experience classes and get used to the building. We have even arranged overnight stays in halls if it will help.

Despite the difficulties now, I am sure that my ASD DC will be able to get degrees if that is what they want to do. Even if it means they stay at home and commute.

Thanks creamteas ... Good to hear

creamteas thanks for the info.

troutpout Ds's school only goes up to yr11 so he will have to move. He has a very spikey profile. Sometimes he talks like a 20yr old, other times he behaves like a5 yr old. Standard practice here is for people to do A levels at FE college but it is too large and unstructured and Ds would never cope. We have looked at some schools with 6th forms outside the town but I am unsure about the level of support there really is there.

In some ways I think the 16-18 age is the hardest to get through, especially if you have to move provider. I was hoping that the move to compulsory education till 18 would help, but it doesn't seem to offer any protection at all.

In HE, students can claim the disabled student allowance, and it can pay enough for 1:1 learning mentor right through HE. (I had a student graduate a coupe of years ago with ASD who had that level of support.)

But in FE, there is very little. There are some residential HE colleges, I have had a couple of students that came to us from being residential at Unsted Park Sixth Form, although I don't how the families funded the places.

Yes similar here haudin. Ds's school up to yr 11 but his school is on college campus and they have a building that is for traditional a level route... So a bit of a halfway house. I'm hoping it won't be too traumatic.
Yes ds has very spiky profile too... literacy and comprehension very high level.. Language processing and retrieval very poor.Looks older than years ... But could easily panic if something unexpected should happen. I worry about him out on his own.
He has an autism alert card which he carries ( launched by a local autism service in conjunction with police here) and which the police and emergency services in our area are trained to recognise. He is also on their database... so his name would flag up his autism straightaway.I'm hoping these kind of initiatives will help to give him some protection out there in the big world.

If a child has a Statement at school they have a Section 139A assessment for FE College. This is supposed to identify their needs and the College get money to make provision. In this area they also get a Connexions advisor who is the person who carries out the 139A.
However in reality the 139A has no teeth. My DS has done 1 year at FE College. The recommended laptop didn't materialise all year and the provision in the first term was really not adequate. The staff had not had ASD training and had no idea.One of his supports said "Aspergers? Never come across that one." There have been some improvements during the year and the staff were due to have training in ASD during the holidays . He is due to take charge of a laptop next week but I will believe it when I see it
IPSEA recommend keeping children in school or 6th form college, where Statements are still valid. Unfortunately we were not able to do this because DS didn't meet the criteria for his school's 6th form.
On the other hand lots of people have told me that their children got very good provision at University as creamteas says.

Yes keeping the statement is another reason for going the 6th form route. He should get good GCSEs in science and maths the A levels he wants to do, but he is also dyslexic and struggling with English and he needs a C to get into 6th form.

NoHaudin that sounds like one of my DC. I am already rehearsing the argument that excluding her from sixth form due to an English mark could be seen as disability discrimination........ It worked for one of my friends at a different school.

NoHaudin my DS is not dyslexic, but his handwriting is about the level of a Year 1 child. For GCSE he got a scribe or use of a laptop(according to the subject), a separate room (with TA present) and extra time. Schools can and do apply for all these things, because it is in their best interest to get the best results they can out of their students. Therefore he can have help to overcome his dyslexia as long as he is able to understand the work, which presumably he can. I assume some students get readers as well, but DS didn't need that.

Thanks zzzzz but I don't think it would work. He actually likes the interaction of teachers and other students so long as it is about something he is interested in and actually works much better in a school setting.

Benson DS does have extra time and a laptop. He could also used a scribe but in the papers he did in the summer decided not to. The disastrous results have persuaded him that he does really need to. We now have a dyslexia private tutor for him and that does seem to be helping.