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February 15th marks International Angelman Day, celebrated world wide now to raise awareness of AS. http://www.angelmanday.info
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So what happened, well global pandemic kept going until Feb 2022. Sure, you couldn’t have made it up. This summer things improved hugely. Anxiety dropped and the chances to go back to all activities, swimming and holidays. Back to Portugal April 2022 (bit cold) but hey you can still swim in cold pools. September was…
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Okay so what happened to 2019. Well it was great, surfing beach holidays. A magical family trip to Portugal thanks to Make a Wish Foundation. Life was good then the global 2020 pandemic hit. That will explain the missed year and why today we are stuck at home a year later. 5K radius from home.…
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Okay, 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 didn’t want to leave her own class…
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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 class where we do a…
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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…
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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…
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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…
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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…
Angelman Ireland 