Being a parent of a child with special needs is really hard work. Physically, mentally, emotionally. You do things you never would have dreamed you were capable of, you develop levels of patience and tolerance you never thought possible, and you keep on going even when your heart breaks a little bit more.
But sometimes its the (relatively) small things that make life so much harder than it needs to be. Take for example the issue of nappies. Some children with special needs wear nappies far beyond the time when most children have been toilet-trained. My own daughter still wears nappies full-time and she is 5. Her nappies are supplied to us by the HSE free of charge as the sizes for older children are not available in the supermarkets.
Just recently I have heard from parents in other parts of the country that the brand of nappies is changing. And the new nappies are not good at all. Two children I know are currently using the new nappies. I asked their mums how they were working. L is a 5 and a half year old girl. Her mum commented that the new nappies leak, are poorly sized in comparison to the old nappies, and are very rough – skin soreness is a problem. Some children are suffering very badly with raw skin. This mum also explained to me that there is a shortfall between the largest child size and the smallest adult size – so when a child grows out of the smallest child size, the only thing they are being offered is way too big. So what are their parents supposed to do??
J is a 7 yr old boy. His mum said the nappies are now thinner – this is meant to be for comfort but she finds that they are ill-fitting and leak. In J’s case this has caused thrush which has spread to the peg site where he is fed into his tummy. This is not acceptable and his mum has rightly complained to the HSE. Their response – which I am still gobsmacked by a few hours after hearing it – is to send a nurse to visit them to see three incidents of how the nappy hasn’t worked. As his mum said “That’ll be a nice experience for all involved.”
It is insulting to our children for them to be supplied with nappies that are not doing the job they should. And its not as if we can manage without them is it? it seems to me that for the sake of saving money (yes yes I know we’re broke) our children are being expected to put up with discomfort, skin infections and loss of dignity.
It is not on. Simple as that. If you feel strongly about this please spread the word – by Twitter, or share a link to this blog post, by email…. we need your help. Thanks.