And so it came to pass – My youngest Daughter (who is registered Blind) will be allowed to learn and grow up in the same school environment as her siblings, she shall know those around her and be able to function, sooner rather than later, with as much independence as can reasonably expected. I have managed to secure for H the promise that she will be allowed to be treated to just the same rough and tumble as her brothers and sister whilst her safety and learning is properly regarded – this is as much as I could ever hope for.
The Local Authority have finally (after a fight that involved a long year of report and letter writing, applications to Judges, lawyers and a threatened tribunal) agreed to support her in the school that the others attend and where she has already been to nursery. Put simply – thank f*^# for that!
There is an interesting volte face in the world of parenting if you have a child with additional or ‘special’ needs:
When your children are born you tend to regard them as wonderfully special, incredibly interesting, super intelligent and you must continually battle the urge to explain and demonstrate their extraordinary capabilities to anyone who will listen. Those who will listen are, of course, only going to be those who are just waiting for you to finish so they can inform you of the amazing achievement of their own bright particular star.
But when your child has attached to them the label of ‘special’ this parental urge inverts itself totally. Then all you hope, and have to battle for, is for this amazing child to be seen as ordinary. To run and play with their friends, go to school with their siblings, to grow up happy and be just – wonderfully ordinary.
Wonderfully ordinary is the achievement of a lifetime. It makes all the fussing about grade point averages and places on the team seem rather indecent: A useful reminder which when applied to the other less ‘special’ children, serves to point out the brilliance of their wonderful ordinariness too. If we can only maintain it, Wonderfully Ordinary is an accolade of which we should all be proud.






5kidswdisabilities
/ October 6, 2012Congratulations on winning your fight! In the US, especially here in Rhode Island, it is mandated that special needs children, especially children intellectually on target, be school with their peers. From the looks of the picture, I assume your daughter has Albinism. I have a son with Albinism who is 30 years old and works as a manger for a major computer company in California. He has led a VERY interesting and full life, including skiing, becoming a boat captain, traveling across Europe himself (while attending Cambridge to get his PhD.) and so forth. He is not wonderfully ordinary, he is wonderful extra ordinary, as I’m sure your daughter will also be.
LowdenPoole
/ October 6, 2012Thank you for your comment. Yes Wonderfully Extra – ordinary is another way of putting it – I had just been battling to ensure inclusion so was focussed on the basics. My Daughter like your son will outstrip the ‘basics’ by miles.
Not Albinism (although many medics make the same mistake) but Leber’s (macular dystrophy).
I am so happy to hear of your son’s successes it is quite lovely to know of such people.
lindacordingley
/ October 8, 2012Congratulations! beautiful family and your daughter is adorable. I wish her a long and happy future x
LowdenPoole
/ October 8, 2012Thank you – how kind.