I haven’t written a blog post in absolute ages but there’s been something that has been whirling around in my mind that I wanted to commit to writing. If you follow me on Instagram, you might know that my son has additional needs and speech delay. I’ve had some comments recently on social media, harmless but infuriating comments never the less, dismissing worries, fears, or even criticisms.
They’re always from parents who don’t have a child with additional needs but feel their advice is still best. I realised ‘I’ve never really spelled out-not really-our experiences over the past few years. Perhaps you may read this and nod along, even send it to a friend to explain. Perhaps you might read this and understand a little more (which is great because before this, I honestly did not get it either!)
Either way, I really hope it is helpful. I really want to show you just for a few minutes what it is like to have a child with additional needs right now.
What do I mean by the title of this blog post? Well, to be frank, I’m exhausted.
We’ve been on this journey for 2.5 years and my son still doesn’t have a diagnosis. I keep having to add a prefix like ‘suspected’ or ‘possible’ in front of any of them, like a journalist who uses ‘allegedly’ so they won’t get sued. I keep having to say ‘additional needs’ and no one knows what that really means but I haven’t got any other words I can use.
He doesn’t really have anything in support, nothing that I haven’t paid for. We are in limbo: made to write down and read everything my child can’t do, anything that makes him not ‘good enough.’ But then someone puts you on a list, comes and does another report or rejects you for help based on someone who doesn’t know us saying actually, he’s not ‘bad enough.’
I want to break down everything over these past years to give you an overview; I just want to spell out, really spell out what it’s like.
Speech therapy: My son has had a speech delay since he was 18 months old. I’ve paid £10,000 (or thereabouts, yes that is 5 zeros) on private speech therapy to help him.
It’s helped a lot. He now speaks constantly and I’m very grateful. His speech is noticeably different from his peers and verbal dyspraxia is a possible diagnosis but not one that anyone actually wants to refer us to confirm it.
The NHS speech therapy is good but it’s just not there-I had six sessions in February and now I’ve got one hour in the summer holidays. Yes, an hour. I need you to understand really truly, how shocking the speech and language provision for our children is because this is actually GOOD if you speak to many parents in this situation.
I actually wrote about this in Grazia and if you haven’t read it, then please do because it is sobering. There are children completely non-verbal who are getting zero speech therapy.
It shouldn’t take paying money to be the difference between a child speaking and not. We’re not talking about getting a degree, we’re talking about professional help with speech and communication. Every child deserves this.
Autism: Yes my child is autistic. Am I supposed to say that, as he hasn’t been diagnosed yet? Are you allowed to say they’re autistic without a diagnosis? Do I need to put * somewhere with a footnote of not confirmed? He was referred two years ago and a few months ago they got back in touch to ask if we were still interested. Yes, still interested as if we were thinking of booking a holiday!
We have now made progress and had our first appointment who said yes, he is autistic, but we can’t actually say that yet, you need to wait until stage 2 which may be anytime between now and October (specific!).
Dyspraxia: Another diagnosis I’m not allowed to say but he obviously has. It’s fine, I am also dyspraxic but this makes it harder because try explaining to someone who is dyspraxic how to teach someone else who is dyspraxic. For Jude, it’s practical things he needs help with buttons, zips, and holding a pencil. It was okay at 3 but now this is making school harder at 4. He can spell many words (his special interest) but cannot properly grip a pencil to write them accurately.
We finally got a referral to an occupational therapist but they offered us a 20-minute youtube video rather than seeing, you know, an occupational therapist. I went back and refused this and now I am back on a list.
Tongue Tie: After years of reflux, dribbling, not being able to say certain sounds and generally struggling to move his tongue, Jude was diagnosed privately with tongue tie after the NHS told me it was in my head. The specialist who cut his tongue said it was one of the worst he’d ever seen. It cost £3000 for this (because it was diagnosed so late he needs lots of support pre and post-operation) but it has helped so this one sort of has a happy ending.
The day-to-day at home with Jude is fine, so I appreciate I am very lucky. In a 121 situation with the right modeling and support, Jude does amazingly. Obviously in a bigger school setting it’s a lot harder but you can just get an EHCP right?
We applied for an EHCP in March and were told it would be 20 weeks so with rough calculations, it would be ready for his first year of primary school. Except we didn’t realize that our idea of 20 weeks is very different from the council, who appear to live in a different timezone.
In May the needs assessment was rejected which means they would not even come to his school to assess him. You spend hours writing down every single thing your child cannot do, why they’re not ‘good enough’ and then they just say no, actually we don’t believe what you’ve written down.
We have requested meditation and have an appointment in September. They say you will have a mediation appointment within 30 days of being rejected but, yes, as you can see that’s 3 months. The ‘clock stops’ during this time which is why councils do this as a delay tactic: in fact over 40% of parents in my area have also had theirs rejected too so I know we’re not alone.
Before I had a child with additional needs, I used to think specialist provisions were always avaliable. When I talk about mainstream education, I think people think that I’m in denial that my son shouldn’t go to a special school. Not only is this not possible without an EHCP but let me tell you (because I didn’t know genuinely), the criteria for special schools is so strict. I spoke to one school which has a specialist unit for children with autism who still learn the mainstream curriculum and I was told he’d have to be non-verbal to qualify.
I strongly recommend following SEND reform on Tiktok because there are thousands of parents up and down the country who are in an even more complex situation than ours: their child does qualify for special school but there are no spaces. But they absolutely are no space.
It’s a really long process and it takes its toll. Having to write the same thing over and over about what your child can’t do. They tell you don’t write anything good. A pediatrician told me not to write down that my son’s strengths were maths and reading or his autism assessment would be rejected (even though, I’m pretty sure his teaching himself to read and recognise numbers from an early age is part of his autism).
You get a school report and already you start to see how the future will go. There are so many amazing things my son can do.
He knows what a trapezoid is and how many sides it has (I never even knew what one was before he told me!); he can read anything- from road signs to story books (‘Stop it’s covid 19!’ he once read from the hospital wall. He spells out whole sentences with his letters.
But of course, reports at his age don’t measure this (understandably) so you get a report saying he is ‘below’ in most things. You may not think speech delay or dyspraxia could impact so many things but they do. He can spell words but struggles to hold a pencil to write his name. He knows lots of facts but struggles to answer a question sometimes. It is something I am used to and not upsetting but it has just really made me wonder if the school system is for him. If all this fight is worth it.
It feels better to write this down and I hope this blog post has given you insight into how hard it can be. When I talk about it, I’m always compelled to say honestly, I know our situation is really not that bad. I know my son can do amazing in life with just the right adaptions but I think that makes it frustrating too, because you can see what your child needs to thrive, to do everything another child can do, but it’s just all out of reach or tied up in red tap.