Perhaps it was the come down after Smiley’s wonderful graduation ceremony on Wednesday, but Thursday felt like the pits. My daughter finishes school next week and her graduation should have been a celebration of her school years and excitement about the next stage in her life. Instead she has nowhere to go and faces an unknown and uncertain future, like many other young adults with special needs.
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I don’t think it was the fault of the staff, I don’t think it was lack of information, I don’t think it was the place where she stayed. But last time that Smiley came home from respite she was clearly traumatised. And I don’t say that lightly. She was only there for one night. Lots of preparations had been made, yet something went badly wrong.
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We’re big fans of dragons in this house, but sadly my brood are more interested in really scary adult dragons, so I’m looking for a home for the charmingly named Snotlout and Hookfang, who landed unexpectedly in my porch this morning to publicise the upcoming DreamWorks Dragons series on Netflix. So I thought a giveaway would be a good plan and the details are below. But first I let the dragon out of its cage box and we had some fun…
|Look what I’ve done!
It’s my birthday weekend, and for once I’m feeling it. And not in a good way. I’m now officially in my mid 50s, and I do not like that place at all. On Friday night I celebrated Angel’s return from Tenerife and my last day in my early 50s with wine, and I’m regretting it now. It was only a couple of glasses too! It looks like me and teetotalism are going to be best buddies from now on. But perhaps that’s just as well.
Sometimes I feel about 100 as I look dispassionately and without recognition at the younger me in old photos. It’s not my face that’s changed, it’s what I do, what I think and how I feel. But I’m not ready to get old yet, and I think the key is in my head.
I had an older brother. I never met him. I never knew him, I never saw a photo of him. All I know is that he was premature, born with spina bifida, and only lived for a few days. My parents only gave me the facts, they never told me how his death affected them or how they dealt with it. And now they are gone too and I will never know.
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I was doing fine until I saw the chair. It looked like a dentist’s chair, except the surgeon would be operating on my eyes, instead of my teeth. This did not make me feel comfortable, in fact it made me want to run. But how could I back out now? I’d spent years thinking about laser eye surgery, and with a friend’s help, I’d finally found a surgeon I liked, who was also going to do the procedure for half the normal price..
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Later this week I’m getting laser surgery done on my eyes. And I’m not afraid. Once the idea of it terrified me, but these days it seems that nothing is as difficult or worrying as being an autism mum. I’m even looking forward to the six hours sleep afterwards, with someone else minding my children.
I’ve realised that nothing will ever scare me again as much as my daily failure to make life better for my son.
I don’t think I’m a bad mum, because my girls have turned out pretty well: and there were challenges along the way with both of them. But I feel like the worst parent in the world, because I seem to be completely unable to help him to become a well-adjusted, happy, fulfilled and independent adult.
Apart from RDI, all of the advice, strategies and interventions have failed or made things worse here. And we can’t progress any further with RDI as I would need to video our sessions and my son objects to that idea, understandable as he is a teenager!
But I have to keep trying, spurred on by the words of one member of his team…
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I have an impressive filing system, even if I do say so myself. I can find gas bill from any time in the past 20 years within 5 minutes. But it’s not just bills I keep, it’s everything home related.
Each year I begin a new folder, and there is a section for each member of the family. It’s where I put everything from school letters to medical information to stuff that might interest them. Usually they are pretty full. So it came as a big surprise to me yesterday when I opened Angel’s tab for 2015. Because it was empty. No more do I deal with any of her paperwork. How did that happen? Somehow we’ve managed a fairly smooth transition from girlhood to adult status.
“I’m leeeeaving on a jet plane, don’t know when I’ll be back again!”
“I’ve gotta get outta this place, if it’s the last thing I ever doo.”
I was giddily humming these tunes rather too loudly as I left the house with Smiley, straight after breakfast. This rarely happens. Of course it wasn’t a jet plane, just my crappy Berlingo, but still it felt the same. The sense of freedom, the deserted roads (Bank Holiday Monday in Dublin) and off we went to the Phoenix Park for the Bloom Flower Festival.
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