Colour slowly returning to the garden. Sadly just in time for the next weather blasting. Just so predictable….

A few years back our son had a wonderful medical expert who did an awful lot for him. Just before retirement I remember the experts prophecy. To paraphrase

Our country’s support for kids like yours is nothing short of a disgrace. Sadly if you think that the support he gets now is patchy and insufficient, well just wait a few years. It’s likely to get very much worse. Maybe when he is 12, most definitely when he is a teenager, the minimal support will dry up. He will get reassessed by clinicians who have no practical experience of your son. They will deem him above the clinical threshold and will turn off the support. Clinical threshold should be renamed budgetary threshold. It’s not a reflection of the clinical position. He will still have severe clinical need for intervention. The support will be removed because as a society we don’t support teenagers and adults on the spectrum. We expect them to fend for themselves. If they don’t fulfil their potential then tough. I’ve seen this happen to virtually every kid I have worked with. If they achieve anything in life it’s just down to themselves and their parents. On top of this the school system just assigns them to the bin. It stinks….

Sadly the prophecy is coming true….

Just before Christmas he was reassessed for one of the support services he receives. The assessment was done by someone who had never met our son. The outcome – the service was withdrawn as he no longer met the clinical requirement.

Today we had a therapy session at the local hospital. It’s a service he has had since he was 7. It’s made some great progress over the years. It’s taken time and many sessions. At the last session his worker agreed on a programme to help with his handwriting, keyboard skills, and areas such as shoelaces/school ties. The programme after that would look at trying to help with coordination specifically aimed at swimming and bike riding. He has significant problems in each of these areas. Well guess what. At today’s session his worker was joined by a senior member of the team. A reassessment was made of his case. After a few practical exercises we were informed that he was now above the support threshold. He was now discharged from the service. They would write to school and give them some suggestions on his future schooling. We were handed a couple of information sheets on handwriting and shoelace tying. We can ask his Paediatrician to review this decision. We are on the waiting list to see a Paediatrician – currently our last appointment was over two years ago.

So we are now down to one service support now. But that is so underfunded. His worker is wonderful but because of workloads she struggles to see him now. Last year we got invites to a couple of group sessions. His last one to one session was back in 2018. Clearly it’s only a matter of time before that last helping hand is removed.

It really feels like that the health service has now dumped our son since he’s a teenager. I guess they argue that it’s an educational problem now. Unfortunately the school system has washed its hands of our son already. Like so many kids the school’s write them off. Label them low attainment. If they get the odd exam certificate in the end then school has achieved its goal. Ticked it’s box on the Government’s school assessment.

So here we are in the brave new world. We are fending for ourselves. Our only support – a few pages of photocopied guidance from a textbook. How can we have got this so wrong. How many thousands and thousands of autistic teenagers and adults are in the position. Some of the statistics on autistic suicide rates, unemployment, depression and poverty are appalling. But society doesn’t care. Our leaders don’t care. That’s a truly sickening thought.

85 thoughts on “Prophecy”

  1. Yup. Nothing here in Ireland either for adults. And for kids….well let’s just say I’m their OT, physio etc as well as their mum. Told their OT today that what she was finally offering was too little too late and I’d already figured things out on my own.
    The only people who actually help are the other autistic people in my life and some volunteers at the local charity.

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  2. It truly is a sickening thought. It’s definitely difficult to get help of any kind from government. This is a sad fact.

    I’m taking some time away from blogging. The explanation is in my latest post. Take care of yourself, superdad. You’ll be in my prayers.

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  3. Factory education…into the meat grinder! Hamburger or sausage is all the government wants for the masses anyway. Easier to manipulate and control.🤬🤬🤬

    It’s horrible, but times like these I’m thankful that Ben will always have support. His future is uncertain and we’re in a bit of physical danger as he grows if his meltdowns dont change, but he’ll have support. We wont be left with a photocopied paper.

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  7. My heart goes out to you completely. My son had a brain bleed at 2 and then brain surgery at 4. There were lasting after affects with learning and speech. He struggles with writing too and short term memory loss. Help is provided here, through the government for public schooling, and for homeschooling, but it is more difficult to attain than they lead you to believe. For us, public schooling has not been an option for a long time. It was extremely overwhelming for him, and he needs one on one learning. In classrooms with 26-30 kids, that was nearly impossible. He was falling behind. He would come home feeling hopeless and calling himself, stupid. It broke my heart over and over. I gave up on the government. I lean more towards support through private groups with parents whose children are on the spectrum or have had brain injuries. Or a lot of Google. It is aggravating that children and adults with Autism are pushed to the side and written off. I am so sorry that you are left figuring things out like this. It supposed to be easier to attain support. If you are able and your son is comfortable, maybe you can find other parents in your area, even just for you, where you can exchange stories and links to support. I have found so much help through other parents, where I could not find it in public or through our government. I am praying for you guys.

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  8. That medical expert was correct – we have those issues here too, sadly. It’s frustrating.

    I’m sorry you and your son are experiencing that. ☹️

    The world sucks in these aspects… we are failing a HUGE section of the population.

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      1. You will do amazing… you know him better than any of them… you know exactly where he needs help… and you are gonna become one of those experts lol… I think you will actually do a better job then any of them ever could. And you are such an amazing parent to take such action in your child’s life… you got this!! You will both learn a lot!

        Well, we tried to keep spirits up today… being the last day of school … I got to at least tell them how much I will miss them… I got alot of hugs I gladly accepted today 🥰❤️ … I didn’t wanna let go… I didn’t wanna leave

        Hopefully is only for a little while… hopefully we be back soon and this will have kinda quieted down.

        I am a little mellow at the moment and kinda sensitive. I am gonna miss being with them – they are such a sunshine in my life.

        I have a little headache… just left and kinda cried. But is just temporary … I just enjoy them… they mean a lot to me.

        But ya know… only a moment 🙏 – thank you 😊

        Haven’t heard from my own kids school yet – they have been in that meeting all day long and it’s still happening… I will get a call from both sides as soon as it’s over (my kids school and my own)

        The district itself might close as well… they are also discussing if will be paid time off (but I doubt it) that would be helpful though!!

        So we will see – I’ll post it ✌️

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  16. I apologize in advance for what I am about to say … GODDAMN FUCKING SONS OF BITCHES!!! What the Sam Hell do those people think they know about anything??? I swear if I weren’t on the other side of the pond I would give those people a piece of my mind, and maybe a rolling pin upside the head! Fight it, my friend! Write letters … to members of Parliament, to Boris-effing-Johnson, to whomever is over the school system. And meanwhile, start looking for homeschool support groups in your area. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr. puff puff puff …
    Huge Hugs to both you and your son. xx

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  18. Just too awful Gary. I never know what to say because wirds seem useless in this awful situation. But you both have my love and caring, for what it is wirth xxxx

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  19. It ain’t just autistics that they don’t care about. They (the powers that be) don’t care about the rest of us, either. Just conform and confirm. If you can’t do that, you are on your own. Your medical expert saw it coming.

    It’s also an example of an economy that is failing. Why isn’t there enough funds to help people…do anything? Because the economic system is constructed and geared to benefit the top 1%.

    Society, in general, is sick and disintegrating. All you can do is the best you can do. I know that’s no comfort…

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      1. Words fail me cos I am just an old fashioned rawheart about things like this and I know that you will sort it out and better than anyone else would with multi v signs attached, but in my book we all move forward together or not at all. And it just pees me off that that does not happen.

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  21. Your story is all too familiar to me. I work for the NHS and I come up against the funding issue time and time again when I’m fighting for my patients to access services in their local community. People are leaving my profession in droves because they are not able to deliver the lever care they know is required and they can’t cope with the ridiculous restrictions imposed by people who don’t understand but hold the purse strings. In 25 years of NHS work I’ve never known it such a mess!

    I’m so sorry for families that need us! Xxx

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  22. Sadly, the system has always ‘worked’ a bit that way. Part of my working life was spent as a sports instructor with a charity giving adults, and some kids, with various ‘disabilities’ opportunities to take part in stuff like rock-climbing they would never otherwise get a chance at. Part of the reason for our existence was as soon as someone reached 18, no matter what their diagnosis, there were pretty well bugger-all available for them beyond sitting around watching the telly.

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  24. This is our path as well. I can see the future and it looks just like this. And it bothers me – OH so much – that the people doing the assessments are people that have never met our kids before. Last night Declan was crying again in fear of going to middle school. He was certain he was going to be teased and made fun of. And he will be there, being teased or not, by then with minimal to no support. I’m so sorry for you and your son right now. The needs are still there.

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      1. Well, I just had my brother and his family in town for a week, so it hasn’t been great haha. I did sneak in a couple of short runs while they were here but I need to get back on it all this week for sure. Thanks for asking!

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