Monday, 12 August 2013

Dealing with Diagnosis Soup

It's been a while since my last post. Mainly because we've been busy with what I like to call the 'diagnosis soup' - seeing all the specialists who have a stake in helping C with his disabilities. As well as learning how to integrate all the home therapy into our daily routine. With all of C's and J's diagnoses, if we did all that each Dr recommended - there would be no time for eating, sleeping ...or living!



So to be rational, we've broken it down into doing a few things:
 - Working to develop routines for the children to follow, ie. turning reading time for J into a deep pressure therapy session, or making C do his drawing on his stomach to build core strength;
- Having toys easily available for kids that can double as therapy scattered around the house ( or that can be requested for messy toys like playdoh ) that they can play with whenever they want, like a bean bag for them to jump into, or a bilibo to spin inside.

As C is old enough to start taking 'ownership' of his own therapy ( and leveraging on his fantastic memory and desire to make sure rules are followed ), I created a list with all the exercises he is meant to do everyday. Then we do at least 2 a day as part of our 'school' routine. Some of these are actually very, very fun - like frog hop races, obstacle courses, or crab walk 'battles'. Some are battle worthy - like his writing practice!

But to be honest, the biggest impact of a diagnosis soup is not the copious quantity of exercises, but the day-to-day impact these disabilities have on the children's ability to function.

For C, this includes an inability to cope with some loud noises, so we simply don't go to noisy locations ( no concerts, or noisy crowds where possible ). But it can be the littlest things that have the biggest impact. Dyspraxia and SPD for C means he has trouble dressing himself completely. It's important for us to give him time to do the things he can, and help him with the things he finds a struggle - getting a shirt over his head for instance, or starting a zipper on a jumper.

For J, she can quickly get overwhelmed by too much activity in a day. If her regular deep pressure exercises aren't followed, guaranteed she will have a meltdown by the end of the day, or start throwing herself from furniture to get the 'deep pressure' she needs to relax. For my little girl, regular cuddles and rocking are a must.

C also struggles with planning physical actions - if I ask him to do something physical like get ready to go out, or clean up his toys, I have to break it down into smaller actions - like 'get your shoes, then get your beanie', or 'gather the toys here, then put them in this bucket'. Otherwise he may just wander off and do something else - or freak out and have a minor meltdown. It's been a struggle for me to make sure I do this - especially when we're in a hurry! And it's been a struggle to remember that he's not trying to be difficult, he's not stubborn, or silly ( even when he goofs off ) - he just CAN'T do it. In his brain, with his wiring, those easy things may as well be cliff-faces. Everyone's jumping up the cliff-face and telling him it's easy to jump - but in his brain, it's a CLIFF! He needs the safety rope of smaller steps.

With all his therapy, I have started to notice some improvements - he doesn't trip over as much, and he's happier climbing playground equipment. I must admit, I did have a big grin the day I saw him go up to another boy at the park and start chatting and playing. That was a real victory.

I live for small victories. If I keep my eyes open, everyday there is a little ray of sunshine.

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