It’s not you, it’s me

I adore our sign language teacher. She has been the one consistent person in our deaf team since the very beginning. She has made me tea while I sobbed on my sofa. She has told me about her husbands heart attack. She taught me the signs for ‘sore’ and ‘careful’ when Shaun had cancer. She has seen me develop from a ball of heartache and confusion into a capable, bilingual mother of two deaf children.

She’s gentle and kind and wonderful.

And she’s deaf.

Her husband is deaf, she has two deaf daughters and she recently had her first (deaf) granddaughter.

Deaf is their world.

It struck me when the granddaughter was born. The mother was not crying. She did not look haggered. She was glowing, and beautiful. There was nothing wrong with her daughter. She was the same as her parents and the same as her grandparents.

And there lies the crux of it. It’s not because my children are deaf that I struggle so hard. It’s because I am not.

It’s a different world, the one where one cannot hear. It’s no better, or worse, than the hearing world. Smaller, maybe.

I don’t know how to raise my own children.

I’ll never understand what it’s like to be them. Much more so than a generational divide, or a cultural one. I am their mother, I’m supposed to know what’s best. But how can I? When I’ll never know how it feels to be deaf. They are growing up into a world that I know nothing about. Nothing.

I’m letting them down right from the very beginning.

Age appropriate

The summer is officially over, mainly obvious by the weather, but more so by the fact that we are back with a bang into several weekly deaf appointments. One of these is speech and language therapy, which, you may or may not know, I hate.

This week though, it was a rare joyous occasion. In the 10 weeks or so since we saw our therapist Harriet has grown from a crawling,  stumbling little baby into a confidently walking and even running and jumping toddler.

And her communication is ‘beautiful’.

She has around 50 signs and can string 2 together. For example she signs ‘fish, come’ if she wants the toy shark.

What this means is that she is ‘age appropriate, in her language’.

What this means is, for once, I haven’t failed her. I have learn BSL to the point I use it consistently, every day. Enough that she has picked it up. Yes we’ve made a concerted effort at times and with certain things. But mainly she’s just picked it up because we just use it.

And this means her brain paths are firing. Her communication skills are formed. Which means that when or if ever she can hear, speech will come.

And that is what this whole journey is about. Us learning sign and them learning speech. So that we can be together, in each other’s worlds that sometimes feel so very far apart.

………………………………………..

H’s words

Fish
Bird
Duck
Chicken
Dog
Horse
Pig
Cow
Cat
Come
Ready
Daddy
Bath
Sleep
Hello/ bye bye
Please / thank you
Eat / food
Train
Baby
William
Bottle
Mine
Apple
Coat
Shoes
Shoes on
Shoes off
Hat
Hot
Blow
Yes
No
Fox
Again
Dinosaur / dragon
Bear
Lion / tiger
Goat
Bee
Go
Slide
Elephant
Giraffe
Cake
Butterfly
Where
Want
Coat

A commune

I live in London. I love living in London. It’s a beautiful, brilliant city and the best place for my children to be.

I also live in a commune. What? You didn’t know London was a commune? Well, neither did I. But it is.

We are all here, us Londoners, together, raising our families as one. We help each other. No wait, we don’t help each other, we judge each other. We help each other by judging each other. I think. That’s how it would seem.

I have taken Will to school, across London, on two different buses, with a total travel time of 75 minutes, for 2 out of his 4 days so far. Both days, people have offered me ‘advice’. The first day was when somebody tapped me on the shoulder to tell me that the sun was in my babies eyes and that it was ‘driving him mad’. I had no idea that I could move the sun. Because, on a packed bus where the over tired baby needed to be in her pushchair, that was the only thing I could have done to help the situation. Thank goodness that kind lady told me to do so.

On the second day, our second bus was not due for 16 minutes and Will had to be in school in 20. So I was frantically using Google and tfl, on my phone, to try and figure out what other options I had. As I was doing so Harriet was pulling out (and apart) her hearing aids. And William was blowing raspberries at people as they walked past. Luckily, a kind lady came and told me that his behaviour was wrong and that he shouldn’t be doing that. I had so much free time on my hands I’d completely forgotten I was raising the future of tomorrow and that raspberries would cause another world war.

And then there was the lady that, as William suffered a major tantrum over something little due to exhaustion at his first week at deaf school because he is only 3, told him that he needed ‘a right good hiding’. I don’t know what I would have done without that advice and I, of course, heeded it immediately.*

And the people who continually ask me where my children’s coats / shoes / socks / hats / manners are.

Because raising a child is difficult. Raising a child in the city is difficult. And raising a child with a disability is difficult.

But living in a commune makes things easier. Because these people mean well, you see, and they genuinely think they are helping me to a better job raising our country’s future.

Wankers.

*I didn’t.

**There are actually lots of very nice and very helpful people in London and I do genuinely love living here**

Bastard hope (again)

A few weeks ago, 4 maybe, Harriet had grommets put in her ears. Grommets are little tiny tubes that sit in the ear drum to drain the fluid. She had too much fluid, you see, and it was affecting her hearing.

The difference was awesome. She had never really turned or startled to sounds.
Now she did.

Harriet has been, more or less, profoundly deaf since birth and cochlear implants have always been on the cards. I think, really, she should have had them before now but I wasn’t ready. The idea was too much – the surgery, the acceptance that this was it, that she would have no natural hearing whatsoever. But I came round. And the assessment process was started. And the grommets were inserted.

And she could hear.

I tried really hard not to let him in.
I tried really hard not to let myself think that way.
I tried really hard not to believe that maybe, somehow, hearing aids would be enough.
I tried really hard not to hope.

But she turned.

And then came the hearing tests.

She can hear. She’s out of criteria for implants.

But she’s still severely deaf. Hearing aids won’t give her enough access to sound to develop speech. That’s a terrible position to be in. Too deaf to talk but not deaf enough to get implants. I surprised myself at how calm I was relaying this tale. How I managed to keep myself from crying.

Today we had another hearing test. Turns out she can’t hear after all. She’s still in the criteria to get implants. She still has 2 profoundly deaf ears.

Is that good news? I guess so.

So why do I feel so utterly floored?

I’ll tell you. Because of that bastard hope. I tried to keep him at bay, I really did. I didn’t even realise he’d let himself in. I had no idea what had been going on in my very own mind until today when it was crushed.

We can do it without implants. We’ll work hard. We’ll try hard. She’ll talk with just her hearing aids. She is better off without this major surgery. I’M BETTER OFF without this major surgery. The odds are against us but we’ll win. We’ll show them all.

But we won’t. Because she needs surgery. Because she’s deaf. Always has been, and always will be.

My beautiful, beautiful girl.

My heavy, heavy heart.

Fuck you hope.