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.

Special Needs

Friendship and citizenship

I have an amazing group of friends.  Well, I have lots of fabulous friends but there is one group in particular who are pretty damn special to me.  These eight women have laughed with me, cried with me, marched with me and generally helped keep me somewhat sane for the last few years.  These women are all mums to children with special needs, as am I.  That’s how we all know each other.  Our children have a wide range of needs and conditions and our family circumstances are all very different.  We live in various counties in Ireland and only get to meet up in person once or twice a year.  Thank goodness for Facebook and other social media!!!

At the moment some of us are anxiously waiting for decisions to be made that will hugely impact on our children and families.  Decisions like will a child of 10 continue to have an SNA in his mainstream school? Will a child with complex medical needs owing to her condition have all the equipment she needs in place to start special school?  Will a child of 5 be allocated a suitable transport place to enable her to attend the only unit in her county that meets her current needs?  Around this time last year, other mums in this close-knit group were equally anxiously waiting to hear about SNA allocation, placement in appropriate units etc.  I wonder what we will all be waiting to hear about next year.

And we are only nine families.  The tip of the proverbial iceberg.  We chat online most nights . We discuss the attractiveness or otherwise of certain male celebrities.  We talk about books we’ve read or are planning to read – not just 50 Shades of Grey!  We laugh about the funny things that happen in everyone’s lives.  And we share the hard days when some of us might be worrying about our children.  And we rant and complain about the lack of services for our children.  Or about the fighting we have to do to access certain things which should be our children’s by right – like education, like speech and language therapy.  But increasingly a note of something approaching despair is creeping in.  Despair at having to keep fighting, despair that our State seems to be endlessly cutting back at services (and if I hear the phrase “budgetary constraints” again!!!)  I said to them all earlier tonight that I truly feel this State (Ireland for anyone who doesn’t know where I am) does not consider our children – or anyone with a disability – to be an equal citizen with the same rights and entitlements as anyone else.  None of them disagreed with me.  (They wouldn’t dare ;))

But surely to goodness there is sometihng very wrong in a country when nine women of different backgrounds who are linked primarily by their children’s conditions all feel like they and their children are getting a raw deal.  Like I said earlier, we are only nine families.  But there are thousands more like us.  Do they feel the same?  In my bleaker moments I despair over the attitudes in wider society towards those with disabilities – do they also see my child and all the others as less than equal?

And in its those bleak moments that I am so thankful and grateful for the friendship of those eight women.  Without their love and support and virtual safety net we have created I fear I would surely have fallen by now.  So to A, A, C, G, K, L, N and T – thank you all for everything xxxxxx