We’ve had BCs second skin for about a month now now. And we are starting to learn a bit more about how it works. So I thought I would share.
The second skin is described by the folks who make it as a body splint. I think it makes clearer sense to call it a supportive body suit. It has boning in it to help keep his body straight and the suit supports him while he does a wide range of activities because it allows him to have better balance and body control.
It’s recommended he wears it 6 hours a day, for 5 days a week (weekends off!). So far, we’re probably averaging about 4 -5 hours a day. He has only once requested that he didn’t want to put it on in the morning, but if he has a daytime nap (which he does once or twice a week these days) he usually doesn’t want to wear it again once he wakes up. I’ve decided not to force the issue at all. I think if he wants to wear it most of the time, that’s good enough for me.
What we LIKE about the suit is that immediately I can see his posture has improved – especially when he is standing (eg at a table doing an activity). He also looks fabulous wearing it when he is sitting on the horse at his riding sessions. His back is so straight and his body so tall. I am sure this not only helps with his strength and balance but also his confidence. I am also noticing a definite improvement in his endurance when he walks in his kaye walker. These days, he can walk a lot longer and further – which I guess makes a lot of sense because he’s getting that extra bit of assistance keeping his body ‘together’ – not so many things to concentrate on at once!
What we DON’T LIKE about the suit (at the moment) is the zips at the legs. I will confess now that for the most part, he has these side zips undone (I will try to post a pic later today so show what I mean). He finds it difficult to move around with the zips done up. They are not designed to always be zipped up anyway – we should be zipping and unzipping for different activities, but in reality, I only do the zips up when we are doing standing activitites together at the table (painting/playdough etc) because otherwise he is constantly demanding my attention because he doesn’t ‘feel’ as though he can move freely. I understand that this is because the suit promotes ‘correct’ movement so he needs to relearn a little. I’ve just opted to take it slowly with this too ;-).
More on the zips – there are LOTS of zips on the suit. 1 for each arm, one down the front, one at each side of the groin, one at each side of the leg and one at the back for toileting. That makes 8 in total and the suit is VERY snug when it’s on and the last few zips are often very tight to get done up. We are getting faster at it, but we do have to allow for a few extra minutes of getting dressed time and I’ve taken to putting it on him in front of the TV so he’s distracted if I am having trouble with a zip.
The suit is supposed to last 18 months and they have given us two inserts which can be attached to the suit if he grows too much within that time. I am no seamstress, but I can tell by looking at it that the stitching is of top quality and it’s designed so that it’s virtually impossible to accidentally zip up bits of skin when you are putting it on (thankfully!).
I was also worried because BC has eczema but the material is fantastic and he’s not had any irritation so far. The same mob also make suits for burn victims (I believe using the same material) so I’m guessing that skin comfort was one of their very early priorities.
One lovely thing about the suits, is that you get to ‘design’ your own. They have several different colours to choose from and they have a whole book full of patterns/images to choose from. Naturally, BC chose a train, but I’ve since seen a gorgeous flowery one on a lovely little girl and another friend with a space design. It’s nice for kids to have this ‘ownership’ of their suits in designing them and it also makes it look just that little less like a therapeutic device which I think is great.
We were happy with our appointments and their follow up and I think I am right in seeing we will now have 3-6 month appointments to check how it is all going. My only wish was that we had a little more time with a Second Skin “expert” pyhsio or OT these sessions to get a few more ideas about the best way to maximise the suit as I felt a little lost in those first few weeks about what we were/weren’t supposed to do – but I do feel more confident now and maybe these appointments are something that will happen in time.
Lastly, for anyone whose interested in the details, I’ll quote from the material given to us by the Second Skin folk about what goals they expect us to achieve with it:
*Improve postural stability and symmetry at pelvis, trunk and shoulder girdle
*Reduce impact of increased muscle tone on posture and movement
*Increase sensory awareness of body posture and movement
*Assist in developing dynamic sitting skills with concurrent arm used in play, self-care and desk top tasks
*Develop greater dynamic standing balance and endurance with concurrent arm use.
*Improve general mobility skills – balance, stability, confidence and safety
*The arm components can be worn separately to, or together with this body splint. They can be used for play activity time, desk top activities, access to technology and for communication devices, meal times etc.
And here’s their website (not the greatest one in my opinion but it does have some good info and pics):
I will keep you posted about how we continue to meet the aims and whether we feel like we’re getting the money’s worth for our kind beneficiaries who funded the suit (Thanks again to them as we could never have afforded it on our own!)!