Tag Archives: children

Spidey Boo: Loving the Lycra

Spidey Boo, Spidey Boo

Does anything that a spider can do…

OK, it doesn’t have same ring to it, does it? But let me tell you: we are loving Boo’s new spidey I mean lycra suit. The Grumposaur is a very keen (insanely keen) cyclist, so lycra and I have a long and difficult relationship. I have to confess, though, that I hadn’t heard of lycra for therapeutic use until Boo’s birth.

It was first mentioned to me not by one of Boo’s therapists, but by a parent of one of Sissyboo’s friends in the playground. She’s an adult OT, who until recently worked for a very overstretched OT service in North London. When I talked to her about Boo’s tone issues (the floppiness in his trunk versus the intermittent stiffness in his arms and legs) she said, ‘Push for dynamic orthotics, you know, lycra garments.’ I didn’t know, but like the research-obsessed parent of a child with additional needs that I am, I found out as much as I could quickly.

At the time, many months before his diagnosis, Boo was far too young for lycra to be of much use. But as time went on, I kept thinking about dynamic orthotics more and more. If only Boo’s trunk wasn’t so low tone, he could surely do so much more. It was on my Boo list (yes: it’s an actual list and it is huge) of things to follow up on. By coincidence, however, at his next physio appointment, his lovely therapist said ‘I think it’s time we thought lycra’.

Of course, nothing therapeutic comes cheap and costs have to be carefully justified and rationalised. So to test Boo’s suitability for lycra, we conducted a very high tech experiment. The physio went in search of some tubular elastic bandages to put round his middle. It turned out that no one in our huge hospital had any at all (and someone who worked there who recently went to A and E with a sprained ankle was apparently told by the person treating them that the hospital ‘couldn’t afford them any more’). So we had to wait until the next appointment.

This appointment was just a couple of weeks later, and the physio came armed with regular bandages that didn’t break the NHS bank account. She and Boo’s OT then tried their best to make Boo look like a Scooby Doo baddy by wrapping bandages tightly round his trunk while his expression gradually changed from disgruntled incredulity to disgust. He was not at all sure the Egyptian mummy look was in this season, but we could all see straight away what a difference this made. His c-shaped spine was more like a capital ‘I’. It was amazing.

Roll on a few months, during which the physio wrote a justification of resources and got a consultant to sign off on the cost, a measuring-up appointment with orthotics and then a fitting and hey presto. The Spidey suit came home.

As you’ll see from the pics, it’s like a mini wetsuit, tailored specifically to meet Boo’s needs. It gives him sensory feedback around his trunk to get his brain to send some of the necessary messages to his trunk muscles so they do at least some of the work they should. It helps him open his hands a little better, too.

It has its down sides. It’s breathable, but not the coolest thing in the world and necessarily very tight. Thankfully it’s good-looking enough that Boo could wear it on its own with a pair of shorts on hot days and he would still look his gorgeous, funky little self. But of course, we only have one suit and it needs to be washed (by hand, of course, no machines) and hand/air dried at the end of every second to third day of wear to be ready for the next morning. (Drying it out is not easy at this time of year, let me tell you.) It also brings with it some physical complications. Boo is a little stiffer at the hips now and his rolling progress went backwards in the days after first trying the suit as he struggled even more than normal to raise and bend his legs. We’re working on that and heading back to where we started now (a pattern we’re very used to in this crazy old life of ours).

For all these minor inconveniences, though, the benefits are enormous and we need to get as much evidence of these as possible in the next few months so that, hopefully, the NHS will continue to fund suits for him as he grows (which he is doing at an alarming rate). I hope to get a pic in the next few days to show you how much straighter his spine is in this. How much longer he can sit in a diamond sitting position. How much better and taller he stands (with our support, of course). For now, you’ll just have to trust me. But even just looking at this pic, will show you something small but significant in our world.

You might not see anything remarkable, but for me, this is a sight for very red and sore eyes!

Look how straight Boo is lying! Without the suit, if you lay Boo on the floor he’d be doing his best impression of the letter S, all squirmed and curved in the wrong places. He’s straight as an arrow here. That’s the lycra.

 Come on, Boo. What are you gonna do now?

Is he strong,?

Listen bud,

Can he swing from a thread?

Take a look overhead.

Hey there,

There goes Spider Boo.

a4641-smallsteps

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Decluttering: Hard on the Heart but Good for the Soul

I read a lovely post the other week by the fabulous Learner Mother. It was about September and her new year urges to get her life sorted and ultra organised. I recognised these feelings. It’s partly a symptom of working in Higher Ed. I always operate according to two years at any one time: the calendar year and the academic year. And for me the academic year has always felt more New Yearsy (that is absolutely a word, before you go running to the dictionary…) than New Year itself. It’s something to do with the weather being better and not feeling weighted down by all those mince pies, I think. In September I want to plan, file, spring clean, declutter and otherwise sort my life out.

This year is no exception. But I admit, I’ve hit a brick wall.

Decluttering. It’s not something I usually have a problem with. I don’t think of myself as being a hoarder (we don’t have the space at home for me to be for a start) or a procrastinator, but I have become expert at both recently.

You see, I kept everything after Sissyboo was born for the second child I hoped we’d have one day. When the 20-week scan revealed most of her clothes wouldn’t be suitable for number 2, I piled them up (keeping only a few things with sentimental value) and sold them at a nearly new sale. (Over a year later I finally got round to spending the money I made then on a family ticket to the Harry Potter Experience next month.)

But I kept all her toys. Not being a fan of the insidious way toys can be gendered I even kept what we fondly know as the Princess mobile, a mini-tractor type thing she was bought by a relative at 12 months, covered in Disney princess stickers and bright pink for him to play on. And then there was all the equipment. The car seats, the baths, the travel system and buggy and so on.

We’ve put lots of it to good use. And I love seeing Boo play with his sister’s rattles and books and shape sorters. But it has been frankly heartbreaking to see how much he can’t use and may never be able to use.

The Bumbo never provided him with enough support. After weeks of trying him in it for a few minutes a day I knew his low trunk tone was not something he was going to quickly grow out of. The infant reclining plastic bath seat started to produce what I now understand to be some sensory issues (he startled every time we put him in it) and now he’s too big to fit in it anyway, but can’t use the upright swivel bath seat Sissyboo moved onto next because it relies on kids being able to sit independently.

Same goes for her cute highchair, the buggy that hopefully soon will be replaced by an adapted buggy with wheelchair services. Oh and the car seats, that don’t support him adequately, and which we have now replaced at great cost with a fabulous Scandinavian contraption that I defy Houdini to find a way out of. I don’t think he’s destined to scoot off with Snow White on the Princess mobile any time soon either.

But I still have all this stuff. And it is useless to us and to Boo. I need to get rid of it. But I haven’t been able to yet, despite it taking up so much room in our house. It’s partly because life is manically busy most of the time, but I know there’s a deeper reason.

You see, I know that in getting rid of all this stuff I am saying goodbye forever to the childhood I had imagined for my son. The conventional upbringing, the normalcy I wanted for him. And it breaks my heart. For him. For us.

But something happened over the past week. I don’t know whether it’s September and my New Yearsy (I told you, it IS a word) feelings, a shift in mental gear or what, but I have started to take pictures of all this equipment to sell on Ebay.

Because I realised that this stuff is just that: stuff. Yes, I have happy memories of Sissyboo using it, but keeping it for Boo is only causing unhappiness by reminding me what he can’t do. I write so often on this blog about how all I want is for people to accept Boo for the beautiful person he is, and in keeping hold of all this stuff I realise am being hypocritical. I need to accept that we need to support Boo (literally and figuratively) as best we can and clinging on to things that might make him seem normal if only he could use them is failing to do that.

Now I’ve come to that realisation, I feel happier. And I think I’ll feel happier still when the stuff is out of the house. He doesn’t need it. We don’t need it.

So out with the old and in with the new. I’m not saying goodbye to one kind of life (actually, we said our farewells a very long time ago now), I’m saying hello and welcome to the life we have. And it is a good one. A really good one.