This is an interesting article written by a Mother over at Terrible Palsy. I like the way she ends it…
“I have noticed over the past couple of years that there is a certain snobbiness/competitiveness that enters the world of being a parent of a child with a disability. In fairness, it isn’t just limited to the disability world, there has always been the competitive world of being a parent anyway. The snobbiness relates to how disabled your child is. I’ve had more than one mum of a child with a severe disability tell me that my opinion doesn’t count as I couldn’t possibly understand what they go through each day….
The truth is, those parents are right – I don’t understand what it is to be a parent of a child with a severe disability. Moo wasn’t the youngest, the smallest, nor the sickest prem in the nursery. Save for a couple of incidents, he had a pretty good run through ICN and Special Care. His CMV diagnosis really hasn’t meant much to us long term save for the initial shock of diagnosis (and the continuous hand washing after handling him). His ROP resolved, as did his deafness and reflux. His constipation is manageable. I didn’t run off and buy a communication device when I was told to by his speechie, which is a good thing too because I don’t think he needs one. His swallowing is such that I can now give him small pieces of steak without fear that he will choke. He is seizure free (touch wood) and has great head control. His right arm is better than his left but still has good function. Although his legs are particularly tight, it’s mainly his adductors, hamstrings and quadriceps that are the problem. His calves are fine and his feet – perfect.
It’s not a competition as to whose child has the worse disability and even if it was, I’m quite happy for others to win. If my child misses out on funding for his equipment because another child has been deemed to have more need, then I am quite accepting of this decision. I don’t have the need to over-emphasise our situation to get funding. I don’t want to go to the media to publish how bad our lives are to get donations – simply because it’s not bad. I don’t want anybody’s pity and I also don’t want to focus on the negatives. We have a great life and are really really lucky.
But even if my child isn’t as disabled as other children, please accept my help in changing this world by encouraging acceptance of people with differences by focusing on the positives. Little by little we can do this together.”
