Why Fight?

I have written a few posts on how to complete various forms, and why, in our humble opinion (my husband is my stalwart support in writing this blog, and my poor editor to make sure that there aren’t too many grammatical errors) it is important to chase information. This blog is why you should fight from the MOMENT you think your child may be a fae. 

Our daughter was recognised as possibly neuro-divergent at her 2 year old health check. We were already pretty sure that this was the case but we had been, to this point, dismissed by health care professionals with statements such as “She can’t be autistic – look at her, she’s as bright as a button!” And “No child that happy is autistic”. We were ignored when we pointed out that she didn’t sleep (well, she must are some point!), hadn’t said a word (well, children develop at different rates), that she was fearless (maybe she just fell off the climbing frame repeatedly) and had a fierce need for routine (all children like routine). So we emphasised that she was behaving normally for herself to the health care nurse when she watched in concern as our little toddler bumbled straight past her and her piles of colourful toys to investigate the door on the cupboard at the back of the room. She would not participate in any of the assessment activities because apparently the hinge was far more interesting. This, we were told was not normal. We still had to push, it was doubly hard as we working through COVID to get assessment done. We were on a waiting list for 6 months for a speech therapist to come and evaluate her. 

Our lowest point was when, finally, after all the fighting and stress and distress, a speech therapist turned up on a doorstep, with bags of equipment to help us finally communicate with our child who was becoming increasingly unmanageable due to frustration… only for us to have to send them away as we had the sodding virus. I won’t lie, we both cried. 

We did portage sessions through a stuttering internet connection, it didn’t work well but was enough for us to demonstrate we needed help. It allowed us to show that she needed support, that WE needed support with her. 

Waiting lists range from 6 months to 2 years. Diagnosis can take up to a year. Without that diagnosis, your child is likely to end up being thrown into the mill of the state education system. If anything will destroy a neuro-divergent child (actually, any child, but neuro-typical kids are more likely to find outlets for their distress) it’s the standard state education system. I say this as a former teacher with 12 years experience. 

A child that struggles with noise, bright light, multiple instructions, and sitting still will have literally been sent to hell in a normal school: being stuffed into a classroom with up to 35 other kids with one – possibly 2 – adults to supervise. Imagine being on the largest rollercoaster in a theme park, going around the bends and drops while everyone is screaming, and being told you are supposed to focus on someone at the front teaching maths or the alphabet. Then being disciplined for not concentrating, or being told you’re stupid because you can’t focus. That is what you are asking your fae to do.

They will then look around and see that everyone else can focus and feel that they must be stupid because they are the odd one out, so they must be stupid. They won’t realise that no one else is on the roller coaster, no one else is getting bombarded by this consistent overwhelming influx of information. No wonder they meltdown when they get home. They will learn to hate school, it’s a place that causes headaches and stress. 

They need sanctuary. If your child needs a special school environment, where classes are limited to 10 and staff ratios are significantly higher (e.g. My daughter’s class has 1 teacher, 4 LSA’s and 10 kids) then they need you to fight for it. Unsurprisingly, fae in these environments don’t detest school: it’s not so overwhelming, it’s a sympathetic learning environment, and as such much more likely to allow your child to achieve. 

So, where am I going with this wandering post? Start fighting as soon as you have an inkling your child will need extra support. Don’t expect the system to just sort things out for you. It’s natural to expect that a country with a welfare system will assign children what they need simply because they need it. Sadly, it doesn’t work like that in this country at the moment. There are wonderful, helpful people working in these places. Treat them like gold dust, because there are also people whose entire life goal seems to be denying you access to anything.

How bad are we talking? We had a paediatrician put in writing that our fae needed one-to-one support, only for it to be refused by a.. person.. at the council who’d never met her, simply because they didn’t want to release the funds. When we fed this back to the doctor in question, she was absolutely spitting nails with fury that she’d been over-ridden. We in the meantime were still just trying to find a childcare option that could take a child who simultaneously had paperwork insisting she needed extra support, and no allocation for it to be provided.

Don’t rely on things Just Happening, or things happening because somebody says they should. Track things, and be prepared to start making yourself a nuisance; if you’re told you will receive a call back from SALT or the health visitor etc in 14 days then on day 15 call them and ask what is going on. Write down the name of everyone you talk to, note what they said. I called ours the ‘shit list’. You need to keep multiple threads working and talking to each other, and you have limited time: the faster you get it going, the better it is for your child.

Unfortunately, the game is rigged: the parents being the most annoying to the services will be seen first. Don’t be angry or abusive, just persistent, it’s your child’s future so you can’t give up. I have written a few posts on how to complete various forms, and why in our humble opinion it is important to chase information. This post is why you should fight from the MOMENT you think your child may be a fae.

We spent over two years battling on multiple fronts, clinging on to the few genuinely helpful people and swearing to ourselves at the rest, and it was hard. But the payoff has been huge: Our fae wakes up and immediately wants to know if it’s a school day because she loves going to school. She’s being supported as she needs to be and her speech has come on in leaps and bounds. She comes home glowing with pride at the badges or certificates she’s earned.

She’s happy, and that’s what really matters.