The Hairy Farmer Family

I am currently in a Bad Place. A place in which I cannot stop Googling ‘expressive language disorder’.

I woke up on Tuesday miserable, but slightly cheered by the knowledge that Harry’s speech therapist was coming in the afternoon. So, naturally, she phoned to postpone. I quietly told her that I had been upset by suddenly experiencing how far Harry has been left behind by a little girl who matched every achievement of his first year week for week. She was sympathetic, because she is a nice girl, and asked me if I still wanted to proceed with a referral to IDS to look at Harry’s balance issues. I said yes, and only after I put the phone down did I look up precisely who the IDS actually are. The Integrated Disability Service. 

What’s in a name? Umm. Everything, it appears. Not just the semantics; the US would call this service Early Intervention. Encountering the loaded ‘disability’ word immediately caused me to have a mental shut-down. I have managed, although I realise I may not have sounded so on this blog, to stay reasonably optimistic apropos: Harry’s language problems. Suddenly, I was looking down the particular trouser of time in which my son’s speech never develops.

Harry has made no verbal progress that I can discern: his words are still impenetrable thickets of assorted sounds to me. He repeats single ‘words’ over and over, pointing imperiously and insistently into the sky, at the ground, at the shelf, at the wall. He is desperately trying to name, or tell us… something. We carefully scrutinise along his finger line, looking for clues. We touch objects, name them clearly, and look back at him enquiringly. If we don’t locate the correct item – and half the time, I think he has no clear idea himself what he actually wants – he eventually gives up and, often as not, descends into a screaming, teary mess. We have tried hard to encourage him to make eye contact with us once he has honed in on something he wants, but he just stares intently and points, still working hard on perfecting his Jedi Master object-levitation trick.

I have started to think: there are some words that Harry hears from us upwards of 20 times a day. Daddy. Tractor. Dog. Sheep. Crayon. Shoes. Socks. He identified these things, and many others, long months ago, but the part of his brain that tells his mouth how to say them does not appear to be functioning. The fact that he hears these words so often and yet is still unable to pronounce a consistent approximation of them has now dropped me into a dark and panicky mental hole where I cannot logically reduce or conquer the fear that Harry will struggle, badly, with language all his life. Will never go to grammar school. Will never go to university, unless he tries universities online, which is never the real “college experience”. Will never achieve his potential. Will never allow me to forget that my body failed him. 

It must, must, must have been me. But it irks me that I may never know for sure if Harry was truly neurologically compromised in utero. This is not the type of thing you bung a toddler in an MRI machine for. I know he had no major bleeds at 2 days old, because the NICU staff, suspecting brain trauma, performed cranial ultrasound. AND a lumbar puncture, but let’s not re-visit that because I want to sleep tonight. But ultrasound, as they told me, is not a particularly delicate tool.

Part of me wants to have concrete proof that Harry’s brain has been damaged in order to have something nice and heavy to wildly batter the ’speech delays are entirely normal’ people around me with. Listen, pal - when you repeatedly hear your unborn child’s heartbeat drop down into the 50′s, the paediatrician tells you he suspects your son is neurologically ‘compromised’, your son has been walking for 8 months and still spends half his time flailing wildly for balance, etc, etc, you tend to be a tiny tad resistant to that sort of comfort. 

The other part of me knows full well that I would look at that proof and think: ‘I caused that. Look what I did.’ And never recover.

It makes no odds, either way. Makes no difference to his current treatment. But this week, I am depressed, up-tight and tense because I thought, after a reasonably uneventful babyhood, that we had dodged the bullet. I’m now thinking that perhaps we haven’t after all. 

Emily Perl Kingsley:

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean, Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Filed under: Parenting | Tagged: Angst, His Lordship, Speech Delay | 20 Comments »