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Son with Severe autism and learning disability turning 18

(21 Posts)
nikki12 Mon 23-May-16 14:53:16

My son will be 18 in a few weeks, he has severe autism (is non verbal ) and learning disability and needs constant supervision due to his behaviour and his pica.
I can't help feeling i should be happy he's and adult now something to normally be celebrated but its making me feel completely helpless and overwhelmingly sad, I feel like all hope of him getting better is gone. Not only do we have an uphill battle to get the help we need but there seems to be less obligation on the local authority etc to help. What can i do.

Rafflesway Thu 26-May-16 17:42:16

Message withdrawn at poster's request.

Citizensmith1 Mon 30-May-16 20:34:03

Hi Nikki and Rafflesway my son is nearly 17 and has asergers & global development delay but is verbal. Wanted to thank you Rafflesway for that information it's really helpful. Nikki I know how it feels to feel so sad - I look at photos on FB of kids at my son's school and they are starting to go out to pubs etc and become independent and I see the difference and my heart really does ache. I am lucky that I have supportive friends and family - I hope you do too.

Rafflesway Thu 02-Jun-16 14:16:26

Message withdrawn at poster's request.

Cabbagedcrust Wed 29-Jun-16 19:11:13

Wow this really hit a nerve with me! My son was 18 2 weeks ago, he has SLD and severe autism and it's been one hell of a journey. I felt so depressed about his birthday and was almost grieving for the things he should have been doing like going the pub, driving lessons etc instead we are watching re runs of the Teletubbies on an iPad all day! I found a card I had written him when he was a few weeks old which was to be opened on his 18th birthday. It bloody broke my heart. I'd imagined all these amazing things he'd be doing and was faced with a very different reality. Big hugs from me OP, it's a tough old painful world sometimes xxx

Rafflesway Sat 02-Jul-16 21:04:40

Message withdrawn at poster's request.

allwornout0 Thu 07-Jul-16 12:00:43

This is just the thread I've been looking for, my dd is 16 years old with severe autism and also loves teletubbies on the ipad.
I've just been having a panic about things like power of attorney which looks like is a no go as she doesn't have the understanding.
I am already her legal appointee with DWP from when she turned 16.
Rafflesway, hate to ask, but is there anything else that needs doing before she turns 18?

Rafflesway Thu 21-Jul-16 17:46:17

Message withdrawn at poster's request.

JudyCoolibar Tue 26-Jul-16 17:58:08

At least now that he qualifies for an EHCP (assuming he wants to stay in education) the LA has more obligations to help in that regard than used to be the case. Does he have one?

And have Adult Care done a full assessment of his care needs under the Care Act 2014 and produced a care plan?

JudyCoolibar Tue 26-Jul-16 17:59:54

At least things have improved with regard to education, assuming your son wants to stay in education, in that EHCPs are much better than the old Learning Difficulty Assessments. Does your son have one?

Also, have you had a care assessment via the Adult Social Care department, and have they drawn up a care plan?

Eliza22 Sun 25-Sep-16 21:10:45

Does your son have an EHCP? Does he have a Special Needs Support Worker? Who is advising you about future and adult prospects?

I am sending your a big hug. I've a 16 yr old who has asd and OCD. I look at him every day and despair and feel so, so sad for what might have been. He is very "aware". He's Aspergers. Has no friends. Is friendless and lives in an OCD world of self imposed isolation, spending up to 5 hours + doing his washing rituals.

Every day, we just carry on.

flowers xx

GoldenGumballs Mon 13-Mar-17 14:24:21

Hi everyone I have a 17yr old son with severe physical/learning diff .we've been told that his school week is to be cut to 3days from sept due to government cuts. Just wondered if this had affected anyone else in other regions or if you'd heard any rumblings about cutting days. We're in Leeds. Please let me know any info as am at wits end.

Eliza22 Thu 16-Mar-17 21:17:45

Golden is your son at college? If he's at "school" how can they cut his hours of attendance? It's dreadful.

Nikki12, I "get" your sadness. DS who's 16 had a taster day at college today. He'll go in in Sept on an Entry Level course. Also, we've just been awarded indefinite (earliest review date 2027) PIP, Enhanced (high) Care and Enhanced Mobility. We've previously had just Care at DLA. I should feel relief/happiness but I just feel huge sadness for him. And his future.

Going to have a glass 🍷 It might help, but I doubt it.

Eliza22 Thu 16-Mar-17 21:19:24

Golden contact your MP. That doesn't sound right to me at all. Your son has a right to full time school education.

GoldenGumballs Fri 17-Mar-17 09:10:00

Thanks Eliza yes have contacted MP/councillors/ head of children's services which has triggered a big meeting next tues where I hope they'll see sense and fairness. But yes he attends school where normally they'd be there full time until 19 so all a massive shock for families. They defend it by saying it's equality!!! 15 hours is classed as full time education for all over 16s. Horrible times. Will let you know outcome as apparently we are the 1st local authority to roll out (run out of top up money) but this could become the norm nationwidesad

vjg13 Sat 18-Mar-17 17:52:50

This is so shocking, please let everyone know how the meeting goes and if there is any support people outside of your LEA can offer, you are right that other local authorities will follow suit.

GoldenGumballs Sat 18-Mar-17 20:32:27

I'll let you know the outcome, we are trying our hardest to stop this.

vjg13 Sat 25-Mar-17 18:35:17

How was your meeting?

GoldenGumballs Sat 25-Mar-17 19:22:12

Hi they are still not giving us answers. The school met with the LA again Friday so waiting for the outcome. The MPs have been told by the LA that the changes will now be pushed back to sept 2018 but what they failed to say is that they're not providing school with the funds to carry on for another year. School have said they will be in £200,000 deficit so have to go 3 days. It's everyone blaming every one but no one actually doing anything. I just can't believe why it's just Leeds surely there must be a hint of these cuts I other councils. Unless my city as made a mess of their budget. Our parent group may get legal advice and go to press but I wish we didn't have to do this and wish they'd have the decency to fund these children who all have complex needs ( my son has physical and learning difficulties ) makes me so angry. But thanks for the interest and I'll keep you posted ( am not sure how you found my post as I put it on the wrong thread grin)

vjg13 Sat 25-Mar-17 20:45:05

Is it all the special schools that will be moving to a 3 day week or just the one your son attends? I know of a special school in Manchester which is operating with a large deficit and they have been making a large number of redundancies at most levels, now some staff who are paid all year round will receive pay cuts as their pay will be term time only.

GoldenGumballs Sun 26-Mar-17 10:53:30

I'm not sure,there are 4 Silcs (spec inclus learning centres) in the city they took over the 'special schools' when the government decided to be inclusive in 2004, which of course didn't work for severe children. Ours is the 1st to notify parents but 2 others are in the process and not sure of the other. This is why I'm wondering if this will be happening nationwide.

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