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."

Why can't I have babies?

This was a question my daughter used to ask me when she was around 10 -13 years old.  It's heartbreaking to break the truth, but parents will often hear this sad refrain and wonder how to answer.

Here are my thoughts:
It's true that females with PWS are unlikely to regularly menstruate unless they have sex hormone therapy and this is now a recommended treatment because it helps strengthen the bones, help prevent kyphosis (forward curvature of the spine) and helps make the person feel more like their peers;  more 'normal'.  Many girls will still menstruate, even lightly and irregularly, and if sexually active, do run a risk of pregnancy, but a large percentage of our PWS population will not have sex hormone treatment, will not menstruate, may never be sexually active and still desperately want their own babies.

Girls with PWS love babies - so do the boys, but the girls have a strong nurturing streak as often seen with their attraction to anyone's baby!  Many also have large collections of dolls and act out their fantasies.  This may extend to fantasies about boyfriends, and I mean really strong fantasies that they insist on being true!  This calls for patience and understanding.  If it gets more unrealistic and even confrontational, then the collaboration of parents with professionals, school teachers, counsellors, and the wider family (particularly people whom the child admires and sees as an 'expert') to help unravel the fantasy even to the point of explaining, for example, that "although, because of Prader-Willi Syndrome, your body works a little differently from others, so that you may never have children - and many, many women in the world don't, or can't - but your sister (cousin, friend, etc) may still let you help care for her baby.  You may well become an aunty to lots of children!"  If the child hears the same story from all, then they generally accept that what they are hearing is correct.  When the child is ready to understand more about their condition, you can either do this slowly, bit by bit, yourself, or seek professional help.


The collaboration of parents with professionals helps legitimise the situation of PWS;  the same story from counsellor (or school) and parents, is often more easily accepted as being ‘ok'. This acceptance will play a major role in if, how, when and where this human sexuality is expressed.  I personally think there is a need for honest, uncomplicated sex education that is two-way.  In other words, listening to the child/teen/adult's concerns and questions, as well as giving the educational side of things.  Softening the blow is always good, but remember that people with PWS are not dumb, they are quite astute and frequently need to hear the full, detailed story!

Deep water.  Yes, often it is, and I know I've written about this in a previous blog and I've been through the whole "I want to have sex" drama with my own daughter, but before I proceed, I just want to reiterate that this is a personal issue for each and every person, and for each and every family.

My daughter decided a couple of years ago when she was in her mid-twenties, that she and her long-standing boyfriend (and that's another story... I mean, she insists he's her boyfriend, yet she hardly ever bothers to see him unless there's a present in the offing) were going to have sex.  This was nothing to do with babies that I could see, it was all about sex.  Great, I thought.  Just what I need, and in spite of the numerous blocks I tried to put in the way (visit to the doctor for sex health education, visit to the sex clinic, sex talk from me, sex talk from her residential manager), she was determined.  To cut a long story short, we (her parents, and her residential staff) agreed it would be ok.  So armed with a box of condoms ("will this be enough, Mum?") she and her boyfriend had sex.

When I next spoke to her, I asked her how it all went (well... you know our kids, they're always willing to share!).  "Did you sleep together?" I asked, and in all innocence she replied, "No, he went home!"  I tried again, "Did you and .. make love?"  Her reply, "What's that?"  It was at that point, I remembered her concrete thinking.  "Did you have sex?"  I asked.  "Oh!  Yes," she said, "twice, but the second time it wouldn't work."

It was all I could do to contain myself.

"We're not going to do it any more, we'll wait til we get married," was her final comment on the subject.

It led me to think about all of this.  Somehow, all she was wanting to do was to be like the next person.  She was acting out a fantasy.  A curious situation, I admit, but she was behaving like a teenager wanting to explore her own sexuality.  She was well out of her teens, but her knowledge about sex was still exploratory and, as far as she was concerned, needed to be tested.

As I said before, everyone's different and I've heard a lot of stories from parents about this subject, but I think the hardest part is the very first time you hear, "Why can't I have babies?"

A kitchen with no food in it...

By MH

When we were young and beautiful (kind of) my husband and I acquired a site in the city where we lived.  We then embarked on an 18-month collaborative adventure with a team of architects, engineers and builders with the aim of creating the house that would become our home.  Shortly after becoming pregnant with my first child (who was later diagnosed with PWS), my husband and I moved into this new house.  

As is the norm where we live, the kitchen was central to the design and intended as the primary communal living space.  Just as the kitchen was designed to be central to the house, food was envisaged as central to the kitchen. So, a large open larder along one wall was intended to provide both easy access to food and a means of displaying food.  

Obviously, we would planned our home differently had we known that our son was going to be born with PWS!

For nearly 10 years since our son's birth we have (largely unquestioningly) accepted the vision that inspired the original design.  The kitchen is occupied more than any other room.  We have used the open larder for food storage.  We have left a bowl of fruit permanently on the windowsill.  We have entered the house through the back door, which leads into the kitchen.   While we have had to exercise some caution (e.g. we don't leave our son in the kitchen on his own) we have largely used the house as we would have had our son not received a diagnosis of PWS.  

Over the recent holidays I finally began to change things by removing all food from the kitchen.  Where did I put it?  Fortunately, the architects had included a small utility room near to the kitchen.  Designed to hold ugly but useful items it has become our new food storage area.  It's isn't large enough to accommodate the fridge and isn't ideal for other reasons, but it works reasonably well.

The open larder and erstwhile food storage spaces in the kitchen are also more than capable of accommodating what has been taken from the utility room.  So there are hammers and screwdrivers in place of cereal, and weighing scales and a first aid kit in the place of tinned food.  It looks ugly, and probably bears no resemblance to what the architect had in mind, but it works better for us.

Did I enjoy reorganising my kitchen?  Not particularly, it just felt like another chore.  However, in the course of my morning's work I reached two conclusions:

1. My family has been far too willing to conform to existing norms and infrastructures that clearly don't suit our lives.  Just as the cultural norm of a food-filled kitchen acting as the focal point of a home does not have to be endured, there are also many other norms and practices that we can and probably should resist. 
2. I have completely accepted PWS. I don't resent having to have a kitchen with no food in it.  I don't resent the fact that my life is (in many ways) different to the life I dreamed of as I planned my house.  I don't feel sorry for my son, my other family members or myself because of his diagnosis. Our life is different to what we expected and PWS is one big reason why, but that's fine.

Incidentally, around the time of my kitchen reorganisation I explained the concept of New Year's Resolutions to my son.  When he appeared not to understand my initial explanation I asked him if there was anything he didn't like about his life in 2013 that he would like to change in 2014.  He was very clear that he didn't want to change anything.  While this could be interpreted as an absence of creative thinking on his part, or an unhealthy obsession with sameness and routine, personally I choose to interpret it as a sign that he's happy with his life too! 

Happy New Year!

I want to go home now

Once upon a time I never thought I'd hear those words without assuming it meant back home to our house.  They were often said, and most frequently when everyone else was enjoying themselves on a long-planned outing, usually to the beach.

"I want to go home", my daughter would say.  "I'm too hot" or "I'm too tired", or anything that seemed designed to interrupt an otherwise pleasant day.  And so it was that outings became truncated, or even avoided and often my husband would take the older siblings on their own holiday - tramping, or skiing, or out to the beach - while I would stay behind with our youngest, thus avoiding having holidays cut short, or "ruined" (according to her sisters).

Separate holidays in our household became the norm, with me taking the youngest off somewhere for a couple of days special time together (often dropping in on other parents who had a child with PWS), and the older ones having some Dad-bonding time.  It worked rather well - no arguments, no fighting, no locking food away and losing the keys - in fact it's something we still do years later (yes, and we still lose the keys...).  We have the celebratory holidays together: Christmas, Easter, birthdays,  but I've noticed that the youngest daughter (now 29) really struggles with anything over 5 days.  Why?  Well, I think it's because she now has her own home, with her own things around her, her own cat, and staff who genuinely like being with her and don't mind repetitive conversations, lengthy window-shopping excursions, or just hanging out with her.  For sure they have 'off' days when arguments become heated and rules are broken, but she would still prefer to live her own life, visiting our home when she wants to.

It's such a relief to know this is her choice and it's something she is completely happy with.  It's been the best residential option so far and, as she has matured, it seems to have become happier.  The staff are very open with her, and with us, but I no longer jump at the ring of the telephone thinking it will be some crisis I have to deal with.  Best of all, she's lost 10kg this year.  She enjoyed her Christmas, was happy to see her small nephew and niece, was happy with her presents (and the promise of a holiday later in the year), but after 5 days when she said, "I want to go home now", I knew it was not to ruin things, but merely a choice she could happily make.