Tuesday, May 2, 2017

Anders and his Girlfriend

by Jean Phillips-Martinsson (Honorary President, IPWSO)

Since he was a teenager, Anders has always loved girls.  To my embarrassment, when he passes them in the street his eyes light up and he mutters "yum, yum"!  Now, at the age of 46, he has fallen in love!  

It happened the first day at his new job, he tells me on the phone when he arrives back at his group-home in Stockholm. As I live in the UK, I couldn't wait for that phone-call to hear if he liked his new job. 

 "Super! super" he replied.  Then there was some mumbling before he came out with "and one of my new colleagues is a very pretty girl who is in love with me."  

"How do you know she's in love with you?" I asked.  

"We had a dancing lesson and she pushed herself against me" was his reply "and I'm in love with her too!"

The phone-call, as usual, lasted well over an hour with our question-and-answer conversation. 

"What's her name?" I asked, "and how old is she?"

"I don't know", was his reply to all my questions "but I must remember to ask her."

Over the following months, not a day went by without phone-calls from either Anders or the staff from his PWS group-home. Despite that our group-home has been open for 25 years, this was a first!  The two of them wanted to be together alone at weekends, but how and where?  Both of them were normally accompanied by personnel when they left their group-homes.

We'd discovered that her name was Hamilmal and that she came with her family to Sweden from Ethiopia some 16 years ago.  She is now 34 years old, lives in a group-home for those with severe learning difficulties, which is some way from Anders' group-home, and has problems speaking and understanding Swedish.  Anders is bi-lingual with English and Swedish and assures us that they usually understand one another....... Body language? Facial expression?

Finally, the staff from Anders' group-home went over to meet Hamilmal's staff to exchange information about their disabilities and to come to some form of agreement. Since Anders' 45 sq.m. apartment is free from food, has its own bedroom, bathroom and sitting-room, it was decided that Hamilmal would come over to Anders by taxi.  Anders then invites her for lunch which the staff bring into them, having as usual, weighed Anders meal.

This works well and for the past year Hamilmal nearly always spends Saturday or Sunday in Anders' apartment.  Anders tells me he's happier than he's ever been.  Both the staff and I agree that he's become much more empathetic, more interested in others and more caring altogether, since meeting her.  

But the big questions remains, what about their future together?   "We want to get engaged this year and get married next year,"  Anders told me when I was with him last summer. He even suggested that they move in together.  But how is this possible when they both need their own staff to support them? Hamilmal would not be allowed to move into Anders' apartment block, where 5 others with PWS are supported by 19 staff, all specialised in PWS.  An independent apartment would also be out of the question.

I'm aware that a few couples with PWS have married with support from carers who are versed in the pro's and con's of PWS. But when one of the partners knows nothing about PWS, is in great need of support herself and needs to have an Ethiopian/ Swedish interpreter with her, what solutions are there?  I've tried to explained this to Anders. His reply?  "I'll take care of her all my life..."

At his birthday party last year, he even gave her a ring, as a present.  At first she refused it, as it was too big for her. However her Ethiopian guardian, who was with her, explained that it could be made smaller.  Now, Anders tells me, she wears it on her ring finger.  But he hasn't proposed yet and isn't quite sure what she thinks about it.

Any families who have found solutions which enable their offspring with PWS to be able to co-habit with a partner without PWS, please email me!

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