Updated: Sep 14, 2020
Guest Blogger: RACHEL ALLASTON (SEN Mum - UK)
When you first learn you're pregnant you go through many emotions, you start imagining what your child will look like, what their life could be like, would they be like you or their father? Never do you imagine having a child that has special needs or is disabled. Your image of your child is always perfect.
When I had my daughter, my first born, she was perfect in every way possible. But by the time she was 18 months old our world changed forever. She wasn’t perfect. Her brain hadn’t formed properly. We were told to prepare ourselves for more tests and that the likelihood of her ever walking or talking or be capable of doing much for herself was slim. She was diagnosed with Cerebellar Atrophy with Ataxia and she had global developmental delay. In a nut shell her brain was deformed, it was shrinking and she was intellectually delayed and would always remain a child to some degree.
But very quickly I decided I would treat her as I would’ve any other child. She started making movements and would be able to get across a room, so from that point if she wanted a toy she had to get it herself. If she wanted a snack then she had to ask for one in her own babble that you only understood if you knew her well. And when she started making attempts at steps that was it - on your feet girl and off you trot!
By the time she started school at the grand old age of 4 years and 3 months (she’s a summer baby) she was using a walking frame for a few hours at a time and her speech had improved enough so that most people could understand her although she may have had to repeat herself a couple of times. However she was such a character that 10yrs on I still get her former educators asking how she's doing even though she was only at the school for a year!
She has defied all expectations that were placed on her. She walks just fine with a walking frame although her stamina isn't too great, but when she uses her wheelchair she insists on ‘wheeling’ herself, She has no problems with her speech although her language can be slightly broken at times but she’s a typical teenager, bolshy, talkative and very stubborn, if you tell her that she can’t do something she will then immediately want to do it! And most of the time she does!
Not once has she ever allowed herself to be defined by her condition KIF1A (KAND - Kif1a Associated Neurological Disorder) which she was diagnosed with at the age of 11, one of the first to be diagnosed with it, and which is so rare she is one of less than 300 known in the world with this and there is 1 person in the world with the same gene mutation as her. For more information on this you can visit www.kif1a.org
I know every parent loves and is proud of their child but when your child is effectively written off at a very young age and she completely destroys their limited expectations of her you can’t help but feel unbelievably proud of her stubborn, unwavering attitude.
She has taught me that I was such a selfish person before having her and even before we realised there may have been a problem I was still selfish to a degree, but suddenly having a child that would be dependant on you forever? My goodness that will smack you down with a bump. But she has made it easy by being who she is.
My fiery, stubborn, confident, empathic and funny girl - I wouldn’t change a single thing about you because you have made me realise just what is important in life....
.....and THAT is why i’m GRATEFUL to have a disabled daughter.