“Back to your child self-harming, back to exclusions, back to non-attendance, back to no school placements, back to fighting. Always fighting…”
For North Swindon mother Amanda Wilkins, who has three children diagnosed with ASD (Autism Spectrum Disorder), it has been a constant struggle to get the special educational support they need. The waiting list for a child just to be assessed for special educational needs is now years long - three years and four months according to GWH or two years according to Swindon Borough Council. A child could be suffering untold damage in the mainstream school system during that waiting period, and once the child has been assessed that’s only the beginning of the problems. In her own words Amanda tells us about her struggles.
By Amanda Wilkins
It’s nearly that time of year where parents all across the country raise a collective cheer and children a collective boo - Back to School! Finally! After six long, mostly rainy weeks filled with endless choruses of ‘I’m bored!’, ‘I’m hungry!’, ‘What are we doing today?’, ‘Why is the internet down?’, ‘Why are you banging your head against the wall?’, ‘Why are you locked in the bathroom eating chocolate again?’, the day is almost upon us where we smile sweetly (secretly air punching) as we wave our precious offspring back to school.
Back to School September is a tad different if you’re a parent of a child with additional needs, however. It’s a quiet dread, it’s a slow, creeping sort of anxiety that escalates as the final days fly by. It’s the fear of the usual council transport mix-ups (a whole separate story in itself, been there, done that, got the t-shirt, thankfully a challenge I don’t currently face), new teachers, new classrooms, new children, new routines. If you’re not familiar with our kiddies on the spectrum, they don’t do new. New equals stress, panic, terror and meltdowns.
For parents of children on the spectrum (personally I have three diagnosed with ASD (Autistic Spectrum Disorder) and ADHD (Attention Deficit Hyperactivity Disorder) EVERYTHING is a battle. Shouty capitals intended. I have run the gauntlet of diagnosis, EHCPs (Early Help Care Plans), mainstream schools, specialist schools, transport, mental health support, medication etc etc many, many times so I sort of know a little bit about what I’m discussing here. And by a little bit, I mean a teeny tiny bit; lots of laymen terms will be involved in this but hey, I’m a layman! I didn’t sign up for this, they didn’t hand me a degree in SEND law alongside my children unfortunately.
Why the battle? Here are a few facts. Did you know that the current waiting list time for a child to be assessed for ASD and or ADHD in Swindon is currently three years and four months?
According to Swindon Borough Council most children are seen in less than two years, but according to the Paediatrician team at Great Western Hospital when I spoke with them last week, children currently being seen have been waiting since April 2020.
In a situation where early intervention is key, such ludicrously long wait times are incredibly damaging, and even if all children were seen in under two years, that’s still too long.
That isn’t taking into account time taken to actually get your child onto that waiting list in the first place. My youngest was refused a place on the waiting list initially because the evidence was only from one setting. She had attended a nursery attached to the school but it didn’t count as a separate setting. This was in year one of school. Fast forward two years, finally on the waiting list for assessment but not coping at all in school, daily meltdowns, risk of expulsion and all that jazz, so I gave up and went private.
Now, before you go thinking that this is a genius plan and why on earth doesn’t everyone do it, it cost £2,000. Quite a bit of money isn’t it! I mean, it’s gone up from there, £2,500 the following year for my third child. It’s more now I think, rising faster than the cost of milk but that’s what happens where’s there’s a high demand and with 12 weeks’ wait to be assessed going privately instead of three years on the NHS you can bet your boots there’s a high demand.
Obviously most people don’t have a couple of spare grand just lying under the mattress, so many parents are resorting to taking out loans and using credit cards as their children quite rightly just can’t wait for over three years to be diagnosed.
Once you’ve actually got your diagnosis you may be thinking that a magical switch is flicked and you suddenly get access to lots of help and support! You will be thinking wrong! If you’re fortunate enough to have a SEND (Special Educational Needs and Disability) friendly school (the SEND training for mainstream teachers is woefully inadequate) the chances of the school actually having the resources to adequately support your young person are slim to none. Every School has a SEND budget but I guarantee that the teeny, tiny little pot (think of a Barbie stew pot) doesn’t quite cover the full-time member of staff often required to ensure our little pickles don’t cause themselves or others actual mortal harm. Every child on the spectrum is obviously very different but in quite a few cases (my offspring especially) scaling fences, climbing trees and hiding in a rolled up piece of carpet so well that an entire School went into lockdown looking for them, is a daily occurrence.
In this instance school (or parents) can apply for a magical document called an EHCP (Early Help Care Plan). This is basically (layman term warning!) a document that details the help and support our young person is legally entitled to and also allocates a band or level that gives the school some funds to provide this support (in my youngest child's case a full time one-to-one whilst in school).
Sounds simple? Guess again. Noticing a theme? Much like the diagnosis process this is another arduous, challenging, bang-your-head-against-a-brick-wall-and-contemplate-running-away-with-the-circus, process. There is no money in the pot (cough cough, thank you central Government, cough, cough) so local authorities do like the Grange Hill kids and just say ‘no’. Of course, they don’t just say ‘no’. They do give you reasons. Crazy, ridiculous, laughable, legally questionable reasons (can you tell I’m bitter about number three child being refused even to be assessed for one just last week?).
If you disagree with the response you can then begin the fabulously complicated process of disagreeing with the decision.
First you go through external mediation, (read the letter very carefully as you can very well expect lots of little tricks and traps that if you get wrong you have to go back to the beginning of the process just like a snakes and ladders board).
If meditation is unsuccessful you get to go to a tribunal which is an actual court! Hurrah, you get to feel like a criminal when the only crime you’ve committed is trying to ensure your child is allowed the same educational prospects of any other child their age which is not actually a crime.
To actually get to tribunal stage it’s generally a year. Probably more. It’s usually more. I mean, this isn’t at all stressful for a parent already pushed to breaking point by being the parent of a child with additional needs and all that that entails on a day-to-day basis.
So, anyway I digress. Back to September. Back to children who are faced with a new teacher, a new classroom, new children, a new TA or in some cases, new team of TAs (new idea this year, usually only one TA). Did you count all the ‘news’?
We are not a fan of ‘new’ if you remember.
Cue school refusal, food refusal, sleep refusal, refusal refusal. Back to part time timetables because children can’t cope in the environment without their needs being met and schools can’t meet their needs because the local authority won’t/can’t provide extra money to fund that support.
Back to phone calls while you’re in Asda doing the weekly shop or at work in a meeting with your area manager (true story) telling you to collect your child as they can’t cope and are having a meltdown or threatening to throw themselves off the balcony (also true story).
Back to your child self-harming, back to exclusions, back to non attendance, back to no school placements, back to fighting. Always fighting.
Still we fight on. What choice do we have? (The circus won’t take you if you are 45 and the only specialist skill you have is a dodgy tree pose you learnt in Yoga).
However, we are a very amazing bunch of people us special needs parents. We get by with support groups full of wise, knowledgeable parents who will take a newbie’s hand and guide them through the swampy waters of education, SEND law and all things relating to our kids.
There are also professionals who accompany us to meetings, especially those dreaded mediation and tribunal hearings, and are able to advocate for our kids in a non-layman way because they are actually trained in SEND law.
We are fortunate to have many online and in person support groups in Swindon where we can ask a question and be instantly inundated with great information and answers, a shoulder to cry on and an understanding ear.
Then there’s the fabulous, supportive schools, teachers and TAs who go above and beyond to help our children despite most definitely not being paid anywhere near enough.
Us SEND parents also have a great sense of humour, tea, coffee and wine.
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