Daddy’s Home

PigeonChase

Some years ago, just after I had presented an academic paper on early mobility at an international symposium, a well-respected researcher accosted me, wide-eyed and excited: “Where did you get all that data about disabled children’s development?”. I had to tactfully admit that, as disabled children are also human children, the key source for a lot of my paper’s data had been my GCSE Child Development textbook…

For a girl heading for a career in corporate finance law, and with the (still not quite abandoned) intention of getting an MBA, a GCSE in Child Development was not the obvious choice. But in the work I do now it has been more useful to me than the second foreign language, or the triple science award, could ever have been.

Possibly because I was myself a child in powered mobility, I have been able to see past the novelty of a toddler in control of a chair (“Babies Drive Robots” is my favourite tabloid-esque, clickbait headline). Instead I can connect the mobility with the normal developmental milestones that every child needs to access.

As well as the infinite variety of small behaviours that a toddler can and must go through for their development such as (to name but a few):

  • Pulling pans out from the kitchen cupboard (hand-eye coordination, understanding sound, the beginnings of engaging in family tasks);
  • Touching the radiator, and learning not to touch it (sensory development, discipline, cause and effect);
  • Posting the gas bill down the back of the fridge (fine motor skills, shape, responsibility),

there are a few major and significant landmarks in development which indicate that a child is grappling with, and mastering, big intellectual leaps.

My favourite of these, at first glance sounds fairly minor, but it’s huge! It is going to the window to wait for someone who is expected. Often it will be Daddy coming home from work. Think about it from the mind of a little person who is figuring out how the world works…

First of all, our toddler has comprehended that Daddy exists even when we cannot see him. You, an adult, think this is a given; but it was news to you once, too! Earlier in brain development, a baby only believes in people they can see. Once we’ve grasped the new concept, we consolidate it by acting on it.

By trying out the ‘Daddy is somewhere else’ hypothesis, this little brain can build on it to reach the conclusion that ‘somewhere else’ is connected to where we are now. Daddy will come into view on the driveway before he comes through the front door. First, our toddler supposes that the space outside the window is always connected to the space inside. Daddy always comes around the same corner, so the next piece of the jigsaw is that wherever he comes from is always attached where we cannot see. Now the imagination can conjure a ‘somewhere else’ place, even though we have never seen it. We’re getting truly existential here, but these are all concepts that adults know and use, that they didn’t have when they were born.

Next: outside and inside are separated by the window, and we can see through the window even though when we touch it it feels solid. When you haven’t seen the phenomenon before, transparent things are weird. Try it now – look through a window. Everything looks the same but different, right? You, who have been looking through windows your whole life, can tell the difference. Before you were two years old, you worked this out.

And here’s another thing that you now take as given, that you once learned: the progress of time. Our toddler has wanted Daddy to come home since breakfast-time. We have been to play at Tiny Toes, napped, had lunch, been to the shops, picked up the older kids from school, but it’s not until after we’ve watched Furchester and eaten tea that it is worth looking out for Daddy. He will be home before bedtime. After, before, since, until, breakfast-time, bedtime – these are concepts that we learn to understand through experience.

Going to look out of the window is not just the indicator that your toddler has reached all these cognitive milestones – it is how they consolidate the thought processes. And tiny humans, even the disabled ones, learn like every other human. “Tell me, I forget, show me, I remember, involve me, I understand.”

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The Start of It All

learning

It’s mid April in 1981. We have two children, a daughter who is seventeen months old and a son of four months. Lou and I are really happy, the children are our pride and joy and my work as a consulting design engineer is going well. Our only worry, that the girl was pushing herself up but has stopped doing so, is being checked out by a doctor. He has told us not to be concerned while he investigates what could be happening … “it’s probably OK”. The door bell rings and the doctor is there. He says he was visiting the hospital round the corner from us and had some news so he thought he’d drop by. A consultant. Making a home visit on spec. We ask him in … too polite to be scared yet.

Tea is made and the doctor spends two hours very gently explaining that the news he has is not good but, despite appearances to the contrary, the sky has not just fallen in. He names what he thinks it is not … Werdnig Hoffman Syndrome … “but don’t look it up because I’m almost certainly wrong”. Looking it up means going round to a library, no internet, so harder to do than nowadays.

It was good advice, the eventual diagnosis, Intermediate Spinal Muscular Atrophy, is also hereditary but less lethal.

Still drinking tea, still chatting, and he says “she’s going to need wheels”. He can’t remember saying it but he did; I know, it’s a major thing in my life and I was there. So now I’m a practising design engineer trying to find the thing which will help my daughter … I expect to find it, the thing that some other dad has made to help his kid so that I can help mine.

It’s not there.

I’m really angry. “Why can I not buy a wheelchair for an eighteen month old child? … because they couldn’t drive it! … Why could they not drive it? … Because they’re only eighteen months old! … Has anybody ever tried it to see if they could? … No! … Why not? … Because they’re only eighteen months old! … WTF?”

So now I’m a design engineer who’s angry and can’t buy the thing his daughter really needs. What next? So I build the machine which got christened ‘The Yellow Peril’ after the nick-name for smoked haddock in our family … Ruth, our daughter, had insisted it should be painted yellow. She learned to drive it in a few weeks which pleased the large number of my engineering friends who had been hugely helpful in getting it designed and built (CCL I can not thank you enough, nor Rog, Paul, Steve, Roger, Alan, Dave, and many, many others for their input and encouragement). I should also mention that the prototype was built and Ruth started to drive it by mid August of that year … didn’t get painted for a bit, though. I might also say that they were taking bets as to just when I would be admitted to the local mental hospital … I may have become a little single minded!

Then I was going to build a red one.

Sam, Ruth’s brother, had driven the Yellow Peril once … I know, I have film of him doing it. He did ‘Round and Round Backwards’ really rather well. I never got to make it for him though as he fell foul of one of the things which can get you when you have SMA, a sudden chest complaint which turned into pneumonia and stopped him … it took one day.

So now I’m an angry design engineer and there’s other kids who can’t get the thing they really need. What am I supposed to do next?

Dan