Parenting · Special Needs

Even the little things can be complicated

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.

Advertisements

2 thoughts on “Even the little things can be complicated

  1. I just thought it was my daughter who had the leaking problem. We only wear at night as she is only being tube fed overnight so HAVE to use but alot of changing of linen on bed as she also sleeps with me. I can only imagine what it must be like for children who wear full time, it’s a disgrace and those people in the Dail should be ashamed of themselves and all the expenses they get should be stopped and given to properly look after this matter

  2. Hi. I agree with you completely. We’ve had both problems with my son’s nappies. He outgrew child nappies & had to use adults xs, he’s 7! Also, the nappies changed packaging, then came without the plastic outer, which not only means they leak sometimes but they come apart at the sides too. The tapes are also not resealable any more.
    I complained to our liason nurse who said no-one else has complained, very helpful!
    He is also only allocated 4 nappies per day. When I asked what happens when he’s sick with a stomach bug (diarrhoea) she said “I dont know, but thats his allocation”?!
    Who does this make sense to?

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s