Parenting · Special Needs

Sometimes I despair for my daughter’s future

For a change I’m not giving out here about the endless fighting for grants to make houses suitable for people with disabilities, or fighting to get equipment to help our children stand or walk or whatever their current need might be. There is a bloody long list of things that we and other parents are fighting for but that is not actually why I sometimes despair for my little girl in the future.

No, the despair is down to attitudes.  The National Disability Authority regularly carries out studies into attitudes towards disability in Ireland.  The most recent was carried out in 2011.  2011 study PDF.  Some of it makes for depressing reading.  To quote Peter McKevitt, chair of the NDA, in the foreword to the report: “..the findings of our study in 2011 unfortunately show a hardening of attitudes across all types of impairments, and of particular concern are the less positive attitudes towards children with disabilities in mainstream education, which challenges the improvements that were achieved between 2001 and 2006.”

Parenting a child with special needs – of whatever type – is hard work.  And there will always be days when it feels harder than usual. But this few months it has felt (to me at least) as if we in the special needs community were fighting battles that we thought – hoped – had been settled years ago.  Back in February there was a hugely controversial article in the Irish Examiner by Tony Humphreys on autism.  Tony Humphreys’ article.  I know many parents who have children on the autistic spectrum and I know that they all found this piece to be hurtful in the extreme.  It outlines outdated attitudes and beliefs that will only serve to push understanding and acceptance of people with disabilities back years.

Then other little things keep cropping up – like being told “sure isn’t it easy for you with your parking permit” when I calmly explained to a woman that I needed that disabled parking space more than her.  I was shopping with DD and needed the space to unload her  and the wheelchair. The other woman had just blithely parked in the space because she was just “popping in to meet a friend” in the cafe.  She did move her car to a space just 3 spaces along…… but only after making the comment above.

Sometimes there are comments on internet fora whch reduce me to tears – like questioning whether or not children with Downs Syndrome should be allowed to attend mainstream school.  Obviously every case is different and for some children with Downs Syndrome a special school will be the better option.  But inclusion should be the aim.

Inclusion and understanding is the only way to go.  But when I read in the NDA study cited above that only 38% of people believed that children with intellectual disabilities should attend mainstream school, well my heart just breaks a little bit more.   As I have said here before,  when we found out our unborn baby had a rare condition our whole world just dissolved.  Once she was here and safely home with us things were easier and we were more able to think about the future.   One thing we were – and still are – determined about was that our daughter was not going to be seen as “that kid up the road who uses a wheelchair” but rather as “Fionnuala up the road”.  We never wanted her to be defined by her disability.  We hoped that society was far more inclusive and accepting of people with disabilties than the world we had grown up in.  Sadly I don’t know if that is the case.

Fionnuala is shortly to finish her mainstream pre-school where she has been going for 2 years.  She has had the support of a pre-school assistant (essentially an SNA) who has been wonderful with her.  The pre-school has done a huge amount for our little girl, she is now completely used to being with other children and is very content away from home.  All very important when trying to develop as much independence as possible.  The other children there are completely accepting  – yes they do ask why she can’t walk or talk very much but to them she is Fionnuala first and foremost.  And that fills me with such happiness.  I just wish I could be sure that she will always be met with that level of acceptance throughout her life.  But I am nowhere near sure of that – and that is why I despair sometimes for her future.

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