Angelman Ireland
Angelman Ireland

Life Today - 2019

 

March 2019 - ok a teenager has moved in. Wanting her own space, slamming doors and giving sly looks. A teenager who can now make her choices clearer so when she had had enough of her fantastic weekly school visits to main stream she just said no. It was clear she didnt want to leave her own class or activities for fear of missing out. So we went with her choice. An element was also the shame of her mother turning up and taking her from school, again age appropriate.

 

This year we also looked at her real interests a bit more than the throw her into everything apporach I may have been going with. So now gymnastics has changed to the most wonderful Glee club for music and dancing. Again with her striving to be with her peer groups who are in a moderate educational setting and club setting. We have had hiccups with tremors but we are managing that now and she can understand how to shake out her hands to release spasm.

 

We are heading to age 13 and as our diagnoisis came age 2 I look back now and have absolutly no idea how we survived 10 years. I suspect it was with the support of very positive teachers, carers, support staff, volunteer clubs who have given her every opportunity to try things. For things that dont work there was always a work around and I am very appreciative of the willingness of folk to try anything.

 

Holidays this year I am feeling less confident to book but we will see.

 

 

June 2018

Well my parents were a bit slow to realise that I changed overnight into a pre-teenager. All of a sudden I would rather sit in my favourite chair in my room on my ipad for a spell that have to do anything Mum suggests. Like. I get sooooo tired after school I need a rest before I am off again with endless games of duck duck goose and chasing. In school we have started to learn to play tennis which I love. Another sport to try. It might be better than my ski holiday in January where I really wanted to ski with my brothers and not my instructor. Lots of things didnt work as well, like the longer lift and faster snow but amybe next time will be better.

Rugby is getting better and I can score a try when I concentrate. The msot fun I have had this year has been in the playground of the school I visit each week. I get to play chasing with all the class and run around - even better is than Mum and the teachers leave me alone.

My communication is getting better as well and I love singing to music videos. I dont understand whats wrong with always playing the one - One Direction song.

 

Roll on summer hoidays and sailing and camps.

 

 

 

 

 

 

December 2017

Well it has been a busy year. From school placements in a national school to see how I get on in the playground and sitting in a classroom. It has gone very well if you ignore a few slow starts. I now spend 45minutes one day a week joining 5th classs where we do a lesson plan and then we go to the yard for break.  The girls and boys are really good at following my lead for games and chasing.

Sking is going well and I now get on the lift myself (4 years in). Holidays here we come. 

 

Summer holidays were very mixed - disaster abroad missing home and my dog and not liking everything was not in frount of me to see. Now we know only  to pick a resort or place where beach and restaurant is all on view and no options - same thing daily will do nicely please. The rest of the summer was great with lots of time in playgrounds and playing with all ages of children. lots of sports and swimming and camp. Disability sailing was a great success with me in the boat every sunday over the summer loving racing my friends. Only because the volunteers and organisers are so much fun and extra patient with me.

 

Back to school was great because all my clubs started back. So long as we have a sport every day I am ok. Getting far more independent and wating to be away from Mum - being in my brothers rooms is more fun. Even - wait for it relaxing in my own bed and not wanting to get up in the mornings. There is hope. Summer

 

Summer 2016

Well its been so busy with endless special Olympic clubs and sports. I wish I had known years ago she just needs to be busy 20 hours a day.

 

I have to pay credit to the special Olympic clubs and volunteers who are so good at giving their time and patience to my child. We do have a week that sees athletic, basketball, tag rugby, gymnastics, swimming and now sailing. Be under no illusion its a slow journey and some have taken year two to get participation and to get the rules and hang of things. But hey we are going no where.  A uniform or top per sport goes a long way to help the days plan and so long as a drink or lunch box is coming we are happy out.

 

February  2016

Well funny how things can be rotten for the weeks over Christmas holidays, no routine, wet weather and then back to school and normal (ah hem) life resumes. Funny how you learn to measure progress. Our Christmas tree stood standing and all decorations intact. We have now actually decided we love getting our hair cut and even though it takes two goes to get all the edges straight Boo even has started to wear hairbands.

 

 

November 2015

In recent weeks though the national ASI charity I have been speaking to a number of parents who are awaiting diagnosis and are just about to start a long and slow journey. It made me really think and see how far we have come but also to honestly think how did we survive the last few years. The lack of sleep and the constant having to be 100% on the ball and always thinking ahead. Well we have just about by the skin of our teeth. You see progress just in areas you didn't know you had to look. That parallel path we are on can be a pain in the neck but we don't really have  choice so onwards and upwards really. Yesterday Boo found the Christmas magazine supplements and decided to check her brothers room in case he got chocolate that she hadn't - it could be a long few weeks to Christmas.

 

October 2015

Well I should have not said anything before the summer. As lots of us find the summer holidays when routines go out the window so does any chance of a normal schedule. The lack of routine and knowing what comes next makes life harder. We survived by being very busy and even if its saying todays activity is going to the shop - as long as there is a plan we are ok. Back into routine now and better for all. Football, athletics, gymnastics, rugby, basketball, swimming - and one doctor asked does she find it hard to exercise. Ha if only -  life is a running race all the time. (Can't imagine where she gets it from). We need to spend more time now on sight reading as the understanding and receptive language really is not an issue.

 

Highlight currently was going to a rugby match with Dad and brothers and actually staying for most of it. A few food and people watching breaks but they made it.

 

May 2015 - turning 9

Well I never thought I would be able to write here - things have improved and calmed down. Maybe tempting fate here but we have had a good two months of improved sleep - after a year of ABA sleep programme and working very hard to educate ourselves. all is calmer and in February we had another successful ski holiday. A lot of sports now fill the week, including tag rugby and athletics. Anything where there is a running race works well.

 

Using the talker with proloquo quite well and starting sight reading. Small steps but huge for us.

 

 

 

 

 

 

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