PMSFUK - Phelan McDermid Syndrome Foundation UK

Case Studies

Emel Curran

emelMy daughter Emel has Phelan McDermid Syndrome and is already 16 yrs old! It’s hard to remember back 16 years, but what stuck in my mind was Emel had no desire to communicate in any way and this made me very sad.
I always felt bad that Emel might want a drink, a toy and I wouldn’t know, so I had everything accessible for her till I was told you are not giving her a reason to communicate, she has all she needs. So I got tough and my life of communication began. Objects of reference and photos, all toys boxed up on a shelf, no drinks or food without some communication, this was hard as she already struggled with many things.

 

We started with objects and photos, then signing. Emel still uses pictures, objects, signing, symbols, facial expressions, pointing, gestures, sounds, words, calendars, PECS, dragging me around pointing to what she wants as well as apps on a device. I thank the invention of the iPad. I used to go out with a PECS book, objects, timer, in fact a ruck sack full of stuff, and finally, due to the wonderful tool that is the iPad, my house is not covered in symbols and pictures.

 

Well 16 years on I understand 90% of Emel’s communication. She has to be facing me and it has to be in context. Sometimes she stumps me but we work it out and get there eventually. Sadly strangers and unfamiliar people don’t understand, but I am her volunteer translator. We are working on more spontaneous use of the iPad but Emel finds this takes to long and prefers to sign and make sounds.

 

As a mum I went on lots of courses in Makaton, PECS, social stories, Hannin programme (this was fantastic, it involved videoing ourselves. I learnt Emel communicated much more than I realised, communication is not just talking. http://www.hanen.org/Home.aspx)

 

APPS that work for us:

 

All PECS apps
My choice pad (Makaton) I use this as a library of all signs, nothing worse when you are out and need a sign then, because if you wait till you get home the moment is lost. I used this only yesterday, we needed to sign avocado … Who remembers that of the top of your head.

 

TapSpeak Choice as a communication aid and app we like to use. Emel’s favourite is Choiceworks.

 

Calendar because she likes her routine and wants to know what’s happening next even though she has no concept of time. There are millions of apps, try free ones and see what works.

 

Remember communication needs a desire and our kids go through different stages for wanting; nothing,  which is hard then to other things like food, TV, toys, people etc. My only advice is try everything, I think the official term is multi modal communication. Never give up, revisit things that didn’t work and do what’s best for you and your family.

 

Keep learning and teaching. Never give up, even when they learn a skill and lose it, which happens a lot with our kids. Keep trying. Communication is a lifelong learning journey for our kids and for all who are part of their lives.

 

Caroline Curran

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