As all parents and carers of children with additional needs know, it’s the little things that keep us awake at night. You know the kinds of things I mean. Those pesky little milestones other children appear magically to race towards without apparent effort and that our children might never reach. Or perhaps, like me, you are troubled by other routine parts of life that I once took for granted – getting on a bus, eating out, having a hot drink without microwaving it three times.
But the little things make a big difference for good as well as ill. Sometimes someone does something, says something, or creates something that really makes a positive impression on your life. That is what Rita Kutt has done with the help of Marks and Spencer.
Rita’s grandson, Caleb, has dystonic quadriparesis cerebral palsy and epilepsy. He is also PEG fed. Children like Caleb and my son, who also has quadriplegic cerebral palsy, rely on lots of equipment to support them in all daily activities. Much of this kit costs a small fortune. The one thing I certainly hadn’t anticipated when my own little boy was a baby was that clothing would be one of them.
Yet clothing is a big issue in our world, just as it is in Caleb’s, and those of countless other families of children with additional needs. Trying to dress a child with high tone in their arms and legs in conventional clothing calls for parental acrobatics and reserves of calm that are often difficult to summon up. When your child is PEG fed, there is the tube to negotiate. And then there’s the question of how to keep nappies in place when your child has long-since outgrown the size 2-3 year vests, sleep suits and bodysuits that most supermarkets stock for a pittance.
Adapted clothing is an essential bit of our special needs equipment for our son. It also carries quite a price tag. Because of economies of scale, companies charge around £12 (sometimes more) for something as seemingly mundane as a sleeveless, poppered vest. The first time I had to buy 5 of these for my son, it was hard to stop my eyes smarting. £60 is a lot of money. And if I had it sloshing around, I would much rather spend it on an hour of private hydrotherapy or physiotherapy.
In recognition of the challenges facing parents trying to source comfortable and affordable adapted clothing for her grandson and others with complex needs, Rita contacted M&S. She asked them to consider an adapted clothing line. After a period of consultation, a range of poppered vests and sleepsuits launched this week costing between £3 and £7.
M&S is not actively marketing the new range, it seems, and is relying instead on word of mouth. Thanks to Rita, her Facebook group and thousands of energetic SEN parents and carers on social media, they haven’t needed to. I logged on to the M&S clothing page on launch day, searched 3-8 (the only way of seemingly locating the items, oddly) and only a handful of sleep suits were left in stock in the size we needed. Needless to say, I bought 3 at a price I was more than happy to pay.
There was some frustration from families on launch day that the range sold out so quickly but more items should be in stock soon and the speed of sales demonstrates just what a market there is for reasonably priced adapted clothing. Keep checking the site and perhaps contact M&S to show them how welcome the range is.
Thank you M&S for listening to families of children with disabilities. But mostly, thanks are due to Rita Kutt, whose incredible work in promoting this issue is going to make a very big difference, not just to Caleb, but to lots of families.
Note: Rita is fundraising for her grandson to have private physio (he lives in an area where NHS provision is inadequate), to help him walk. Find the campaign here.
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