18 years of this alternate reality. Of 'dunno what's up but he's not right' Then, 'global developmental delay, shall we call it cp?' Then 'he has autism too and learning disabilities'
Then a good SN school. Then SN college (our school goes to 16)
He's done well..for him..he can read, write enough to do a shopping list. He can catch one bus to his SN club all by himself. We get Direct Payments and DLA. He can walk, though his gait is crappy and his AFOs rub. He talks. A LOT and mostly about his obsessions. He still believes in Santa.
But he's 18 next weekend and he's still not fecking normal . He wants to leave college as there is nothing he can learn more there that he can't learn outside of it ..he needs masses of independence skills that he doesn't have.
And the adult world is scary. A job? Ha don't make me laugh.. who wants a learning disabled young man with ASD even though he is kind and gentle and gives his best every day. We are hoping for a Mencap Traineeship to fill a few days. He has a personal budget agreed but no one has come to help us set it up and I hated being an employer so have used his DPs for holiday clubs til now. He leaves college in 6 weeks and there is NOTHING set up for him.
No doubt when his DLA turns to PIP he will lose most of it even though he needs hell of a lot of support. Fighting to get his EHCP as his Statement ceased at 16 for college where his s139 plan isn't legally enforceable and they will only convert it when he has an educational plan in place (Mencap)
We had it relatively easy... DlA.. no arguments, Statement.. no problem, even Direct Payments without a hitch. But becoming an adult.. a whole new fighting game begins again, and meanwhile I have a young man, who WANTS to work, wants to be part of our ordinary adult world but without the ability or skills to be there. It sucks.
I'm sorry this is such a depressing post ... but it never ends. I'm watching his 'peers' doing A levels, heading for University, getting girlfriends and boyfriends, learning to drive, finding their feet and becoming independent, and it breaks my heart that my beautiful, gentle son, who is not high functioning in any way, does not have in any way the same life chances because he happened to be born with disabilities.
On his birthday we will have a nice day.. take him to the Dr Who Experience as he is obsessed with Dr Who. But when his brother and sisters turned 18, they went out partying, they had jobs, the terror of A level results pending, and while I love him with every breath in me...
I wish it could be different . For him and for us.
Medusa that is an amazing post , I remember reading your blog years ago and it was a huge help , fwiw it's so helpful to hear from the parent of an older child , thank you for being so honest, I wish your son a happy birthday and I hope you all have s great time at the dr who experience
Medusa - The anniversaries and big birthdays are tough, I think. They force us to look at things in a comparative way which we can ignore most of the time.
My friend said about the first anniversary after his wife died that he had been told to "embrace it and make something good out of it, so that it doesn't crush you" which sound exactly like what the Dr Who experience will be.
Hugs - I can't imagine that day. It terrifies me tbh.
I wish too that all this SEN would do one and leave us all the feck alone.
I keep thinking back to when ds was born. Holding his tiny body and wondering what he would be. A pilot, doctor, tradesman like his dad, science IT geek like me. This life didn't make that list of possibilities.
Of course four and six years later I didn't think those thoughts when his sister or brother was born. My list was will they talk? Will they leave home? Will anyone live them after I'm dead.
So yes, it's pretty shit. I'm going off for a cry and some tea. To rebound a later time full of hope. Because without hope the tears would never stop
Oh my medusa, what a post - as autumnsmum says, thankyou for your honesty. Do you still write your blog? I'd love to read it. You gave me some great advice about orthotics, a few weeks ago (ds has his AFOs now!)
Funny you you say that..I'm going to be updating this week! I don't update it often as there is not a lot of need to but milestones need a comment. I'll link it here when done.. just in case it is of help to someone.