World Down’s Syndrome Day: ‘London’s care and education system is a cruel lottery’

My son, Theo, turned seven in January. I’m officially no longer an amateur when it comes to fighting to get his needs met. My boxing gloves are scuffed, worn and I could probably do with a new pair — I’ve thrown quite a few punches in my time.

Theo was born prematurely at 29 weeks with a postnatal diagnosis of Down’s Syndrome. This path — this different path — has been fulfilling but it’s also exhausting. Exhausting because of the broken care system, not because of Theo, who lights up my life every single day.

I often wonder what would happen if I didn’t have the fight in me, or the wherewithal to know how to navigate a cumbersome, complicated and if-you-don’t-ask-you-most-certainly-don’t get system? I worry about other parents in the same position as myself, where English is not their mother-tongue, filling in the extensive forms, trying to get through to their Local Authority, needing to speak to someone (emails rarely get answered). How would their child fare? They’re at a disadvantage, that is for sure.

Life with a disability is hard enough, but the constant striving to get what your child deserves makes life depressing at times too. As a parent you do far more because you have to. Everything is more demanding, requiring a level of patience you didn’t know you had. You utilise different forms of communication, give out endless instructions and explanations and that’s just getting out of the door for school in the morning. Then you come home and get the boxing gloves on and fight whatever issue is most pressing at the time. Never expecting to speak to the same person, feeling lucky if your call gets answered and expecting months and months for a simple decision to be made.

It’s frustration, and then some.

Last year, I had three separate fights on my hands, which involved getting legal advice. It was overwhelming. The steep climb I was doing every day to have a chance in hell of getting what we needed took a strain. Of course, on top of all of that, I am Theo’s carer and mother — by the end of the day, I’ll admit there wasn’t much left in the tank.

We live in a north London borough — I’m not a huge fan of my Local Authority, we’ve been in the boxing ring together many times over the years — but, I’ve learnt, through experience and with the help of the Down’s Syndrome community, to work the system. I’m not clever, nor am I an expert, but I know now that the ceiling of what you think is the best you can get for your child can — and should be — be smashed.

For example, my son doesn’t talk very much. It’s a common thing in kids with DS and it requires a heap of time and therapy. Talking would be brilliant — we could meet more of his wishes, know when he is feeling poorly and, well, just talk to our son. (So many parents with typical children have said to me: ‘I wish my child would stop talking for once’. It makes me burn with envy). Initially on his Education Health Care Plan, we were assigned six hours a term — that equates to less than one speech intervention a week. I was told to be grateful as that was the highest level the Local Authority can award. But it didn’t even touch the sides.

So I forked out £450 to get a private speech assessment done by the Down’s Syndrome Association to prove that Theo needed far more. The report was pages long, written by the country’s top expert and stated that Theo needed two hours a week. What a difference. My next job was to present that to Theo’s mainstream school, call an early review of the Education Health Care Plan and get the recommendations written up. Then the council cannot say no. Folks, once you’ve managed to get a provision on your Education Health Care Plan, it’s written in stone. But it’s a lengthy process.

I know one family who after the inevitable struggle have been successful in getting excellent provision for their son with regular therapies in a fantastic setting. This child is thriving. Compare this to another family whose daughter has a dual diagnosis — of Down’s and Autism — yet they are having to take their Local Authority to court to prove that their child needs educating in a special school. Two diagnoses and no special education — what on earth is going on? Why should that family be put through this on top of a challenging daily life and spending thousands of pounds in solicitors’ fees? They are having to pay to prove their daughter is disabled enough to get her needs met; it’s astounding. No one should ever be in that position. It is such a cruel lottery.

And it’s this which gets you down. When you see a special needs parent looking weary, upset even, don’t ever presume that it must be their ‘troublesome’ child. It’s the worryingly troublesome system. We’re weary because of what we have to do to keep the pillars of support standing around our child.

When I think of the time, energy and emails it has taken to get what we have for Theo, it’s a fulltime job. If I felt like the system had my back, I wouldn’t have to be dragon-mum on the phone, speaking in a slightly aggressive tone when asked irrelevant questions or having to repeat myself again. I have sent some stinking emails to my Local Authority— they probably have my head cut out on a darts board in their office somewhere. No matter — you rarely speak to the same person twice.

Most of the time, we are just getting on with our lives — doing the school run, freezing our fingers off in muddy playgrounds, tackling the mountain of laundry, trying not to get soaked at bath time — but when you’ve got a heavy cloud over you, it all feels too much. And it shouldn’t.

So whilst World Down’s Syndrome Day is quite rightly a celebration of our community which is brilliantly smashing the mould at the moment — thanks George Webster and An Irish Goodbye — it is also a day to recognise what needs to be changed. And so much does, believe me. Until then, I’ll look for a new pair of boxing gloves.