Sounding off! The diary of a mother of a deaf child

Every month Tiger Mother – mum to moderately deaf Hayley, 14, and her two brothers Lee and Harry – brings you a frank insight into the ups and downs of life with a deaf child who has autistic spectrum disorder. Read her updates on the NDCS website, and post your views and comments.

This month, Tiger Mother is left baffled by the support 14-year-old moderately deaf Hayley receives. And Hayley’s not exactly forthcoming with information…

February 2013

Wednesday evening, cooking dinner

“Oh by the way Mum, someone came into school to see me yesterday, you know, not in a lesson, in the teacher’s office, about what’s happening with me. They hadn’t heard anything from the people, you know, who do my… you know… thingies, those printouts.”

I pause, stirring spoon stilled, and mentally prepare for one of Hayley’s communication challenges – the potent combination of teenage vagueness and can’t-be-arsed-ness as well as hearing loss and ASD.

“A little more information?” I suggest.

Hayley sighs, rolling her eyes. It’s hard having such an unreasonably exacting and obtuse mum.

“Right. Not the man who used to come in, you know Mr…um, what was his name? But a lady this time. She’s going to watch me in English another day.”

Ah, I nod. Got it. A few years ago I’d have been wrestling with this information for some time to make sense of it, but now I almost instantly realise that Hayley’s Teacher of the Deaf (ToD) visited her at school.

I’ve written before in this column of how little (well, no) information we as parents are given about Teachers of the Deaf, and I make no apology for repeating the topic because I know it’s a common experience. It’s baffling and infuriating.

I mentioned that, when Hayley was very young and first wore hearing aids, she came home from school with a worrying story. She told me that a man she’d never seen before had taken her into a room alone, away from all the other children, and had a little chat with her.

Confused and more than a little alarmed? Yes I was.

It was only when I spoke to the teacher next morning that I learnt her Teacher of the Deaf had visited. I didn’t even know she had one, let alone what they did. Well why would I? No one told me.

What makes me mad is, why do the powers that be – local authority run Sensory Support services that provide ToDs – think we should not be informed? Is it a big secret?

Even when you learn that ToDs exist and work with your child, you still don’t have a clue about what they do.

You’re not told when the appointments are going to be, nor invited to be there. It’s a bit like some sinister undercover benefits swoop or drugs bust. Depending on how communicative your child is, you may learn from him or her weeks after the event that a meeting has taken place. That’s if you’re lucky…

For years I didn’t know there were reports of the visits because the school SENCO never forwarded them on to me. It was only when I hounded Sensory Support that I found out the SENCO is apparently supposed to forward the reports to me. Sensory Support say ToDs don’t send parents copies, though how hard would it be to copy you in an email, or pop an extra copy in the post?

It’s like the whole thing is none of your goddam business.

I thought we were in this together, that we shared the same purpose – the good of the child and their progress at school. Surely it’s in everyone’s interests for us parents to be informed. Why this conspiracy of silence?

But on this particular occasion Hayley’s telling me about, even the ToDs were out of the loop. Hayley’s ToD hadn’t been sent any information from the audiology department Hayley attends since 2010! Whose fault is it that three years have allowed to pass with no updated information – audiology or Sensory Support?

But if I was kept in the loop, maybe I could have helped. An email, a letter, a text, hell just a Tweet or even a tap on the window from the beak of a carrier pigeon would be welcome.

How can we as parents actually learn exactly what kind of support (including from the SENCO, Speech and Language Therapy and others) their child is entitled to, especially if they don’t have a Statement?

What really worries me, and I’m sure thousands of other parents of deaf children, is that this is while the going’s good. These are the salad days of support.

Many ToDs do a great job, as plenty of parents will attest. Perhaps children who’ve been diagnosed as deaf before school age, especially profoundly deaf rather than moderately like Hayley, find the ToD plays a larger part in their lives.

But already overstretched resources mean the existing support in schools is usually woefully inadequate.

And by the time this government has finished stealing the very education from under our deaf children’s noses by viciously cutting back their vital educational support, including ToDs and Teaching Assistants, things will be even worse!

It’s just not good enough. I’m going to get as many people as possible to sign NDCS’s petition to help save deaf children’s services. Deaf children already get a rough deal – they need all the help we can give them.

But first I’m going to chase up some missing audiograms…

Sign and share NDCS’s Stolen Futures petition now to help stop vital cuts to deaf children’s services.

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