Looking for Patterns

When Hugh was little we tried to work out why his seizures were happening, what was causing them. Sometimes we attributed them to illness- an underlying chest infection, brewing chicken pox, sickness and diarrhoea. Other times it seemed to be pain related- teething seemed to bring them on. But often, and increasingly so as he got older, there was no obvious trigger, nothing we could pinpoint that was the cause. They just seemed to happen. So instead we looked for patterns, attempting to find order, to give ourselves a sense of control over something which we really had no control over at all.
Recently our pattern appeared to be about every three months Hugh would have a big-not-breathing seizure. He'd invariably be hospitalised and more often than not require IV drugs to stop the pattern. We'd have 3 bad days- he'd need resuscitating anywhere between 6 and 20 times over that 3 day period. He'd be out of sorts for a couple of days, extra sleepy or with lots of other type…

Drum Roll Please ...

When babies reach for themselves in the mirror or bat at toys, you don't even think about the thought process and control of movement that goes into it- you take it for granted as just another stage in their development. But when your child struggles, you start to see the miracle that these simple achievements are.  

I remember about a year or 18 months or so ago watching a video of a friend's son playing with a toy drum. He's a similar age to Hugh and developmentally delayed as well. I was delighted and amazed at how he'd reached and used his hands intentionally to hit the drum, smiling then at the loud noise that resulted from his actions. I couldn't imagine Hugh ever doing that- it seemed too big a step for him. He had (has) limited control over his movements and his vision is so poor that seeing and then reaching for objects seemed nigh on impossible.  It also takes a level of cognition I wasn't sure was achievable- a simple understanding of cause and effect; the ability to formulate an idea in the brain and then work out how to do it before finally telling and making your limbs cooperate.

Then one day, Hugh found his hands. He loves his hands. He eats his hands. He holds his hands for hours on end.

Then he started to reach for things- familiar toys; first with one hand, then with two. Two hands working together.

And he started activating switch toys, first by accident when his hand knocked the switch.  And then with concentration and purpose.

Little by little.

Step by step.

Until this week, he did this:

I'm linking this up to the linky on Ethan's Escapades which celebrates 'Small Steps; Amazing Achievements', because it is, it really is!

Ethans Escapades