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!

Guilt

How can I talk to you about guilt?   It's not an easy subject and I feel awkward talking about it, but sometimes when I stop and analyse my feelings, they seem to be conditioned by guilt.

When my daughter was born, I grieved - we all did - for the daughter we were expecting and didn't get.  Time goes by and the grief calms down.  It never disappears entirely because there are hundreds upon hundreds of little things that other children do that remind you your own child can't; but it abates.  It becomes replaced with pride in what your child can do, rather than what they can't.  Suddenly, you have this amazing opportunity to see life from another perspective and you stop searching for those rose-tinted spectacles that made life the way you wanted to see it, and you clean the lenses of your old glasses, and suddenly get a whole new view.

Most of the time it's rewarding, it gives you courage to go on, it fills your heart with love for your child who tries so darn hard to do everything in life that they can.  Then there are times when your 'life spectacles' cloud over and it takes time to get back the right perspective.  The knock-backs are still there, but can be seen differently and learned from. Yet, even the smallest of knock-backs can still hurt.

"I visited my niece yesterday, Mum.  It was lovely, and she is so sweet.  I played with her on the floor, but she didn't smile at me, just at her own mother.  And the clothes I bought for her, well, they don't want them.  They've got enough clothes."

And immediately I feel hurt on her behalf.  I know how she has shopped in all the second-hand places for these little clothes.  I know how she has bargained for them and I know how carefully she has washed them all, hung them out to dry, folded them and taken them as gifts for her niece.  

"Mum, I hope you don't mind, but I have been thinking about not visiting Grandma much any more.  (Grandma is in a retirement home.  She is frail and forgetful.)  I just don't think she knows me, really.  She tells me she does things like play bowls, and I know she doesn't.  And she never says goodbye to me."

And immediately I feel hurt again.  I know how she plans her visits to Grandma, how she takes her little things that she thinks she might like.  I, too, wish Grandma was not like this.  I feel guilty that my daughter is not loved enough.  I feel guilty that I am not loving her enough to prevent even the slightest knock-back.

So, I asked, "Did you mind when your sister said not to bring any more clothes because they have plenty?  And do you mind not going to see Grandma, now that she is old and forgetful?"

And here's when I know my feelings of guilt are totally unfounded -

"No, not at all.  I know they've got heaps of clothes!  They're already spilling out of the cupboard!  And no, I don't mind about Grandma - I don't want to upset her."