Friday, March 4, 2011

On becoming complacent, and the Year of the Snail!

Do those of you with kids who have disabilites ever get kinda lazy?  It's been a while since DinnerDad and I had a proactive attack on things with Snail, you know, go to a lot of appointments, try new things, buy stuff, surf things online, go to a lot of therapy.  For me this is a combination of factors: it's hard with a nearly 3 year old as well; Snail's main issue at the moment is her seizures, meds, and loss of functioning, I think we both feel hopeless in the face of this; it's hard to do new things and programs in shared care, though in all fairness this has got a lot easier in the past year or two for us; we're time poor, particularly DinnerDad and his new job, he does some serious hours, and a LOT of travel. 

So I've decided to go on a Snail therapy binge this year.  You know, one of the hard things about commiting to this is that I'm "only" her stepmother.  It's easy to feel that I'm overstepping boundaries.  But DinnerDad's work is ridiculous, I'm at home looking after the kids, so have way more time than I will when working, and the lovely Lolly is nearly 3 now and much lower maintenance, so am kind of the obvious choice to do some of this stuff.  So I'm doing it.  It's mostly myself I needed to convince.

What are our priorities for the Snail this year?

- Epilepsy: hers is not controlled well, and what meds she does take seem to affect her functioning (it's that, plus seizures, hard to know which is doing what - this is the main problem).  Left to ourselves, DinnerDad and I would probably try a period of little or no medication this year to try and isolate what is contributing most to the functioning issue.  But I'm not sure how her mum would go with this.  I think DinnerDad will try and work on this with her pediatric neurologist and her mother this year, with some ideas from me thrown in.

- Working with what she has got: there's a lot more therapy I'd like to do with Snail.  Her walking is hopeless at the moment, she has grown heaps, lost core strength, and the seizures and meds play havoc with this and her coordination.  She walks in this bent over fashion, almost at 90 degrees, unless you physically hold up her shoulders.  By walk I mean supported walking, she can't walk independently at all!  She has a giant walker, but it's kept at school.  She does therapy at school, but we're committing to after school physio at home, and getting a new consult from the CP league about things we can adapt here.

- articulated foot orthotics - she needs new ones, or an adjustment to her current ones, they are rubbing on her instep, poor love.  She needs these to use her walker at school.  This photo is from years ago, but shows her orthotics.

We need to get a new set, and some more advice on therapy for her walking at home.  She needs a new hip x-ray too, which we've been putting off as she needs a general to get it done, and we are a bit "what's the point" about it.  There's nothing we can really DO even if her hips are problematic.  So we're getting more advice on this, too.

- more stuff to do at home: she has heaps of things she loves, but we haven't had a switch or similar set up for her for ages! 

I'm also getting her some new adapted toys for her birthday (she'll be 12 in March!!).  I am going to put a new shelf area in our lounge for Snail specific things.  Any ideas!?  I'm going for one of these for her birthday!

OMG how cool is this!!  It's an Elmo bubble blower, switch controlled.  "Elmo" is one of Snail's words, she LOVES him!  And what kid doesn't love bubbles?! Check out the other great toys at Technical Solutions Australia!

- an iPad.  More on this in another post!  Snail has a Dynavox, which to be completely honest we didn't want in the first place.  Not to mention it cost over $5000 dollars.  I mean, seriously!!!!  I hate that if something is for a disabled person, it seems to suddenly be worth about 10 times its real value.  We have never found the Dynavox useful at home, and Snail would only really use it to play with, rather than communicate.  Which is fine, but I was just using it for play, so it's an expensive toy!  This was one of those things we just went along with, but wouldn't have gone with ourselves.  An iPad for Snail, though, she will use a lot!  I'm thinking it will be about $1000 all up including some of the expensive apps we want on it (!!), and a good case.  Snail is a drooler (meds), so if anyone reading has some links to cases that will protect it from drool, let me know in comments!

- And finally, just coz it's gorgeous, she'll be getting one of these for her birthday, an umbrella that will attach to her chair, from Shady Baby.

So, round our place, it's the year of the Snail!  I'll keep the blog updated as we go.  :D


Anna said...

We definitely tend to go through patches of being 'lazy' about stuff. I don't reckon lazy is the way to describe it. Maybe just life gets in the way?! Have you ever looked into the Ketogenic Diet? We are going to try and get an ipad this year too. Just have to look into some funding! I love the umbrella too!!!

Rachel said...

There are no nice waterproof ipad cases that I can find, they all look like large glad bags... You can get an otterbox + a waterproof bag at which looks like a good solution. Good luck!

Selene said...

Oh, thanks Rachel! You rock at finding stuff :D That looks like it would work.

Anna, we've read about the Ketogenic diet, but haven't done it as yet. And I see what you mean about it not being lazy. We should give ourselves a break!

Anonymous said...

Thank you, love DD.