PWS and "Other People"

By MH

 

Last year I saw an accusation that was widely shared on the sites of organisations that support people with disabilities.  It was structured as a question and answer and went something like this: 

• Question: "What is the biggest problem faced by parents of children with special needs?"   
• Answer: "Other people".  

It is a sentiment that many of us, accustomed to intolerance, insensitivity and rejection, can instinctively relate to.  But is it fair? 

At my son's 8th birthday party (he has PWS) 2 minor incidents revealed to me a vision of a happier and more inclusive world.  The custom, where I live, is for children to have birthday parties in venues outside their home - typically sports or play centres where 2 hours of fun is accompanied by a meal.  Finding a venue that provides a meal comprised of anything other than junk food is always a challenge and so was the case that year.  The matter, as usual, was resolved by me supplying my own food.   

The first incident that brought a smile to my face happened during the meal, when one of the 15 or so happy children noticed me carrying a large platter of fruit skewers into the room with 8 candles on top - our alternative to a birthday cake.  Announcing my arrival to the others she declared, "Oh look, we're having a fruit cake".  While the offering comprised no cake and all fruit, it was still accepted without complaint or comment as "the birthday cake".    Some fruit pieces were swapped, all was soon eaten, a few good-natured skewer battles occurred and play continued.  The fact that my son was not having a traditional cake did not appear to cause any problems for him or any of the other children present.

The second incident, which brought a tear to my eye as well as a smile to face, occurred when, as the party drew to a close, all the children congregated on a large bouncing castle.  A complicated game was hastily agreed that involved all children having to cross the centre of the castle from one side to the other.  Within seconds of the game commencing one child realised that my son was unable to cross the castle.  She immediately (and loudly!) commanded everyone to stop bouncing to make it easier for him.  When he still couldn't manage, another child positioned herself in the centre to hold his hand to help him across.  As I was standing out of sight and there were no other adults present I felt certain that this modification of the game had been done not for the approval of adults, but because the children instinctively understood that everyone needed to be included.  I also felt certain that my son felt neither patronised nor different as a result of the game's rules being changed to meet his needs.

I don't think this group of children was unique or particularly remarkable.  Yes, all of the children attended the same school which proudly promotes an ethos of equality and inclusion, but they also came from different backgrounds and experienced different parenting.  My son, to my knowledge, was the only child at the party who had a disability. Yet all the children were able and willing to engage collaboratively and inclusively with each other.  They were also sufficiently open-minded to accept that things may not always be the same - e.g. some "birthday cakes" may be very different to others.

The question this raises, of course, is what happens?  How do open-minded, tolerant children turn into adults who  are perceived to be the biggest problem faced by parents of children with special needs?  I don't have the answer.  But I think it's an important question.  And do I personally believe that the biggest problem faced by parents of children with special needs is other people?  No, just other adults!