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Showing posts with the label special needs parenting

Dear Angelica

Dear Angelica,  You don’t know me. You don’t know my son but we talk about you every day.  Every single day. Last Friday I felt initial relief when I passed your old school, Kylemore Abbey, that I didn’t have to talk about you.  We always talk about your school days there. We've often visited and every time we see it we talk about you, we talk about everything about you.  You see, my son has something called Prader Willi Syndrome. Amongst the host of symptoms are obsessive compulsive behaviours. One of his obsessions is you! Facetiming Angelica!  It all started with your role in The Witches (apologies Ms.Hathaway while we enjoyed your portrayal, nothing will top the one and only Angelica Huston). He decided The Grand High Witch was real. It was a true story. And sometimes the Grand High Witch would visit him. He would say that Grand High Witch was in school. He knew she was real. He was convinced. We were almost convinced. He has a wonderful imagination, he i...

Seeking 'normality'

It must be such a comforting experience to be able to send a child to school and not have to worry about how they’re getting on. I feel guilty just writing that sentence. Parenting a kid with special needs does that.. guilt.  It must be a comforting experience not having to keep your phone near you incase the school ring and hoping they won’t ring but when your phone does ring you’re relieved when it’s not the school but your heart skips a beat when it is.  Then you answer the phone with your heart racing and you’re told what’s happened... and as you end the call your eyes are tear-filled, as even though you said you’d be strong, it rarely happens. And then you feel guilty because whatever you’re feeling, you know your child is feeling worse.  It must be comforting to go to pick up and not have to be prepared that your kid had a hard day, that when you open the communication copy, you make a wish to read a positive account of the day and not a day with incide...