Equipment Overload

First time in Standing Frame

First time in Standing Frame

Sophia has been measured for a specialist seat to give her better postural support for when she’s sitting and doing her fine motor skill work as well as for meal times and for when she’s tired etc.. Of the chairs on offer I chose the Jenx Bee which literally has large wooden bees on either side of the seat and is quite fun-looking as I wasn’t ready for the all singing, all dancing, very supportive looking piece of equipment which was the other chair on offer and which screamed at me: “OH MY GOD, MY CHILD IS SEVERELY DISABLED.” The time will come when we will probably have to have something like that, but I’m not ready for it right now. Plus the one with the bees on almost looks like a high chair, albeit more complex, and I want to protect James a little while longer from knowing the full extent of his sister’s disabilities. At the moment we put everything down to her not being able to see but he’ll definitely realise it’s more complex if we have the other chair on offer.

And we have just taken delivery of a Lecky Squiggles Stander: a frame on wheels with a tray attached upon which Sophia can be positioned lying down, then strapped in and gently repositioned to standing whilst being fully supported. We have to build her tolerance up from 10 minutes twice a day to 40 minutes, as well as doing the sitting to standing exercises (which she is gamely struggling with but finding very difficult). Sophia didn’t take to the stander immediately, but Dee, with her brilliant Portage head, introduced a whole new world of messy play with food and doing this whilst strapped in the stander has transformed Sophia’s opinion of being on her feet, especially when chocolate Angel Delight is on offer (mixed in with cooked but cold spaghetti for added texture – ewww disgusting, but a new favourite for our girl). I do not understand why playing with food will ultimately encourage self-feeding and not food fights for years to come, but apparently it does – as I seem to be spending an inordinately long time cleaning up mess at the moment, it had better be worthwhile!

We also now have a Sound Box supplied by Jane, the Vision Specialist. It’s essentially a large, 3 sided wooden box with a perspex lid from which hang various tactile objects. Some of the objects make noises (bells, squeaky things, chimes) and some are simply great tactile items. Sophia lies underneath and the idea is that she lifts her arms up and touches and plays with the items which hang down. I raided our local pet shop for some cat and dog toys which are brilliant for sensory work and after placing a handful of toys on the counter top, closing my eyes and touching them, picking them up, shaking and squeaking them to check their effects, I was amused by the strange looks I received from the other customers when I opened my eyes.

The Sound Box is fantastic. Sophia has begun to raise her arms to reach out to the objects (something she resisted doing under her baby gym) and the slightest movement creates a reverberation around the box which she really responds to by either giggling or listening intently, thus encouraging her to explore more. Plus, it’s somewhere safe I can leave her for 30 minutes knowing she’s happily being stimulated without needing my hands-on assistance and I can get on with preparing the dinner etc..

Jane has also lent us a spotlight and mirror ball for Sophia’s bedroom and she definitely notices the lights spinning around the room when it’s switched on. She listens to a nursery rhyme CD at the same time for greater ambience because of course I can’t have only one of her senses being stimulated at once, even if she does need to concentrate visually. (I really hope Sophia isn’t a monster in the making with all her constant exertion – there’s a distinct possibility that in the future she’ll not be able to cope with down-time at this rate and start tantrumming.)

Dee has supplied a peanut ball (a small gym ball in the shape of a peanut shell) for her to roll over to encourage transference of weight through her arms and legs. Plus of course she is still providing the weekly toys to help her reach her Portage targets. Then we have the black & white sensory corner with hanging mobile and lights plus the crawl track. (Not much joy with the crawl track as yet although she does propel herself along it in a snake-like wriggling motion which is a form of movement and therefore can’t be detrimental. But my idea of her being up on all fours and crawling seems a long way off. I will have to start patterning crawling for her soon I think, but she needs more strength in her neck, back and arms first.) She spends time in the corner and on the track every day.

We are currently over-run with equipment and I can’t help but thank my lucky stars that we live where we do in the country that we do to have access to all that we do.

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