Life changes when you become a mum, even more so when your son has a disability. With any baby, normal run of the mill activities become calculated missions of precision and specialist equipment. Leaving the house takes two hours of planning and a boot-load of accessories. Going on holiday requires upsizing your car and is suddenly void of lie-ins.
Everything changes, yet with a child who has complex disabilities, even specialist equipment no longer suits. Within a few short years, everything has to be bespoke. The pushchair and highchair don’t offer enough support. Buying clothing is no longer just about what looks good, and nothing seems to do exactly what you need.
So, I have learnt to adapt.
Our lives have had an overhaul that includes everything from our priorities to our furniture. One of my primary goals is to create an environment where my whole family, are comfortable, can make choices and are understood.
This isn’t a jazzy or emotional blog post but this stuff makes a difference to our lives every day. If you don’t have a kid with special needs here’s a little insight into what we have to do to get by every day. If you do, hopefully, you’ll find my Top 6 Disability Hacks useful when caring for a child with complex disabilities.
1) Disability adapted clothing
Marks and Spencer have introduced a specialist range of clothing designed for kids with additional needs, but it is limited. On the whole, specialist clothing is expensive and not that appealing. I’m not one for sewing so when S was a baby, I went to my local sewing shop and made a very good ally.
Faye, at Stitch in Time, has waved her magical sewing machine and made my life easier time and again. She put button holes in baby vests to poke a feeding tube through, put slits into the shoulder’s of shirts (so that chest straps can go through – meaning you see the design and style of the shirt, not a grubby chest strap) and she regularly extends the zips in my son’s trousers.
Her best work though, is making S’s coats open at the back. Once I have bought a new coat, I take it along and she cuts the back in half, here she left the neck in tact allowing to slide over S’s head but simply tuck the sides in around him.
Now, I can get S’s coat on while he is still strapped in his wheelchair. He looks like he is wearing a normal coat but without all the fuss of putting it on and off. (The full impact of this can only be understood if your child is strapped in a wheelchair.)
2) Music Everywhere
In the words of 10cc, my son doesn’t like music, he LOVEs it. He sings (you might think he is moaning but I know he is singing) along to Funk Soul Brother by Fat Boy Slim, Peter and the Wolf by Prokofiev and Twist and Shout by Beatles.
So, I have cut the foam out of the headrest in his Chunc wheelchair and insert two pillow speakers. These can be hooked up to the music on his iPod wherever we go, with the added bonus that he gets to listen to it without us all having to.
On the occasions when we are relaxing on the beach, up a mountain on his all-terrain Hippocampe (see photo above) or just need louder music, we use the UE roll. When the right music is on, Sam is happy, so to prevent us having to play DJ he uses a jelly bean switch and Big Jack (sadly discontinued) or the Iswitch. This means that Sam can hit a switch and move the song on, so he can listen to the songs he wants to.
Good Music = Happy Boy
(I’ll let you into a secret – when you see S smiling in a photo it is because we are singing to him or have the right music on.)
3) Communication Passport
S’s communication passport is a ragged folder of information and facts, that go everywhere with him. It tells you what medication he is on, what time he needs to use the toilet, what he likes, what he doesn’t and how you can tell he is in pain. It is now over twenty pages long and brimming with information.
It has short direct statements and lots of photos. I spend a lot of time keeping it up to date but it is worth it. Whenever S is in hospital, has a new carer or goes to the hospice for respite, the communication passport is thumbed through and re-read.*
4) When you’ve got to go, you’ve got to go
Since S started deliberately farting on his Grandma’s knee to get a laugh, aged three, I started trying to toilet train him. He makes a specific noise to mean ‘yes’ or ‘yes please’ but that is as far as his communication goes – and it isn’t consistent. Yet, we do have days when S is fully continent.
He used to use the Flamingo chair but now is in a Rifton HTS (with maximal straps and support) but when we are out, I use the super long zip on his trousers (adapted by Stitch in Time) and get him to use a Uribag (which we get on prescription) whilst he is still in his chair. He also listens to ‘Who’s on the Loo?’ read by Stephen Mangan. Some days I hear Stephen Mangan’s voice more than my husband’s.
One thing that changes the quality of my family’s life is the amount of sleep S gets.
He is put in a specialist sleep system in bed using velcroed supports so ‘Super Faye’ (see I told you she is amazing – if I was Prime Minister every parent like me would be given a Faye) has sewn a soft velcro sheet into his fitted bed sheet to keep everything in place. Then we make sure his room temperature stays warm, use a weighted blanket and memory foam moulded pillow. He still needs turning through the night but we are working hard to get him to sleep on his back which is much better for his posture and reduces body shape changes.
6) Films on the go
There are only two things better than music – swimming and DVDs. S loves a bit of Frozen or How to Train your Dragon. So when we go out for a meal, Sam’s special treat (instead of eating) is getting to watch his favourite films using an iPad and arm.
Even though I have actually mentioned about a dozen adaptations, there are many more things that we do to make life easier, but already this blog is far too long. So, what I want to know is…
What do you do?
Please tell me your tricks of the trade and let’s see what wisdom we can share.