I’ve been a parent for over seven and a half years now and while I have learnt an immense amount in that time, there are some things which I can only conclude are mysteries we are never destined to understand……
1. Even if there is only one child in the family, at least 60% of the laundry will always be their clothes.
2. The smallest baby – even one just home from hospital – knows when you have just sat down with a hot cuppa.
3. Cardboard boxes are infinitely more interesting than the most expensive interactive all-singing, all-dancing toy.
4. Nothing is as interesting to a child as the contents of their nose. Or as adhesive.
5. A poorly child will always wait until Mum has just had a much needed shower and hair wash before they cuddle into her neck and cover her clean hair and neck in spit, snot or a combination of the two.
6. Babyhood does not operate on the same time continuum as the rest of the world. Babies grow up fast. Very fast. Blink and your newborn is trying to crawl. Blink twice and they are off to school.
7. Baby vomit has some special element that enables it to get down your bra while leaving the puking child relatively unscathed.
8. Babies and toddlers instinctively know to hold off on a big poo until just after you strap them into their pushchair to go out.
I’m sure there are other things that I will never fathom out!
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.