Angelman Ireland
Angelman Ireland

Meet Boo

 

I am Boo, I am almost 13  years old and  I have Angelman Syndrome  and I can do lots of things. I got the nick name 'Boo' from the film Monsters Inc as I screamed and cried for the first seven months after I was born thanks to non stop acid in my tummy. The name stuck but luckily the reflux went away. Oh and I dont bother to sleep much but I do love my bed.

 

 I can and I love to:

  • Play any sport, rubgy, swim, basketball,running running.
  • Go to the playground anywhere
  • Get my shoes and eveyone elses
  • Tidy things away
  • Play and have a go at any thing I see
  • Go anywhere at anytime.
  • Have a job to do.
  • Ski

 

You may wonder why we have tried ski and ski holidays. Well its December 17 and  I am still at lessons every week. Holidays to come in February so time to seeif my lessons and usingof the liftworks.Watch this space.

 

Ski 2018 - ok we were back on slopes, mastered drag lift and all keen. In reality holiday to a different resort the snow was so good and the drag lift a lot too long and her brothers were not beside her 24/7 so we had the pre teenager who didnt want to ski with instructor. For 2019 we are taking a year off and will look at going back to snow with maybe a group specialised more like her club at home for lessons. I also now in hindsight wonder if the hand spasm actually meant she could not keep hold of drag lift. (Eh hello Mum ).

 

 

Ski - 2015

We made it to Austria again and she had a great week in blizzard snow. Still on the nursery slope but going on the drag life herself and charming the ski instructors. Actually the holiday went better than the return to ski slope at home where she lost her nerve after a fall. That meant by the end of the season she had given up co-operating at all. The first two weeks of September were a no-go and I was ready to give up but we have gone back to her comfort zone on the baby slope and all is right again. I have to be so so grateful for the instructors who kept at it and worked with what she was comfortable with. Is it worth the weekly hardship of getting there in the wind and rain - yes it is because she is so proud when she comes down a slope with her hands in her pockets as if its the most natural thing to do. Good for her.

 

Update - 2014

Another successful ski season and holiday. Very slow progress but its progress. It was amazing to go back to a same resort and ski school and for total strangers to be 'hi how are you we remember you'. It made the winter standing in the rain and cold so worth while. We found in Austria the ski community so welcoming and matter of fact - get on with your holiday. Nothing was an issue and travelling as all good with a lot of support from travel company and airline.

 

Over the last year Orla has been going to ski lessons for special needs. The reason I am including this as it has worked for so many reasons. Both this year and last year we went on a family ski trip - mad you say but it was great. The outdoor, the snow all worked to give us a family holiday and yes Orla was on skis. The first year with me but no problem walking in her gear and she does not fall over. Its odd but I think its the whole sensory and grounded aspect that work for her. She can balance really well.  This year with the help of a special instructor she had a lesson every day with one day doing 4 hours of class. This was on baby slopes and nursery drag lift and magic carpet - look at the pictures.

I never ever thought I would be leaving her but by day three we were hiding out of sight and only there for the last half hour of her lesson and I was only helping motivate her a bit.

 

Thanks to the ski school at St. Johann  and her instructor Stephen she had as good a holiday as the rest of the family but more importantly she was included. Never say never. That and a daily swim after and lots of dinner made it work.

 

Yes the hotel choice, airport and arrangements were all chosen to make it as easy as possible but it was so worth it. We were so proud of her,  ok she can't draw a line across the page and count to ten but she has no problem communicating in Austria. 

 


 

Ski school in St. Johann is at http://www.suedtirol-tirol.com/ 

 

Also if this is something that interests your family also look at the UK foundation Ski to Freedom which has a wealth of ideas and information.

 

http://www.ski2freedom.com/en/index/the-foundation

 

 

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Co Dublin, Ireland

 

E-mail: hetheringtons@eircom.net

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© Sara Hetherington