With And Without You (A Day with Smiley)

If I'm lucky I get to sleep until 5.30am when the alarm goes off. Sometimes I think that Smiley can hear it too, because I hear her calling on the baby monitor at the same time. Today was one of those days: she wanted her wet nappy changed, and then I sat with her and had a quick coffee while the water heated up. I left her with the telly on, had a quick shower and dressed, ready for the day.

At 6.40 her home help arrives and between us we get her showered, which involves lots of logistics and hoisting and mopping - so I wash the whole extension floor at the same time. While her home help gets her dressed, I dig out and iron the clothes, and find her leg splints and put everything within reach.

Once she's hoisted into her chair, it's breakfast time and that gives me chance to help my other children while she is helped to eat and drink as needed. After the home help leaves I have a quick breakfast and a peek at Facebook and twitter on the laptop. Smiley enjoys watching it and joins in the chats with me and her siblings.

Then I pack her bag and hoist her on and off the toilet and get her ready in her chair for when the bus arrives at about 9.15 am to bring her to her (centre-based) programme.

I can fill the next 6 or so hours in a number of ways: spending time with the other children, shopping, cleaning or maintaining the house, administration, appointments for any of us, lobbying or advocacy for special needs or autism, or even some self maintenance so I can keep doing this!

It passes quickly and when she arrives home she has a drink and a small snack while I chat to her about her day and unpack her bag.

Then there's more toileting, followed by floor time: I encourage her to lie on her right side first to stretch the tight muscles in her neck -- with the help of Britney and a bit of massage and tickling, she does very well. Then her left side with the addition of a different splint - she can relax like this for a while, but I often sit nearby on the computer before heading across to the sink to start three different dinners.

Hopefully we'll all be fed by 7.30pm and then I'll clean up the kitchen to the sound of Smiley giggling and the Tweenies singing - and I'll join in with the dancing too. Some days it's the Bananas or the Rug Rats - the same shows she's been watching for more than 15 years. I do try different videos and shows, but she usually objects, at least when she's at home.

Finally we start the bed time routine: the washing, teeth cleaning, toileting, hoisting, pyjamaring, and a long stretching session to relax her muscles so that she can tolerate her sleep system, which is essential to prevent her body getting twisted. Then it's lights out and soft music on.

Sometimes I have to pop back and move her around until she is comfortable, but usually she is asleep by half past nine. And sometimes she sleeps all night.

So I am without her for a number of hours during the day, but that is an essential break for both of us! It's full on when she is with me, and I wouldn't have it any other way, I love it when she is happy and I love making her happy. But she needs more than just me and a care worker or two in her life. I believe that she needs the company of other young people, just as she would if she was in college or working at Google, and she loves company, there is no doubt about that. Apparently the activity she most enjoyed this week was watching one of the Euro 16 matches with a gang from her adult programme...

So please can someone help me ensure that the good life that she has right now can continue. Would you deprive her of that?



13 comments:

  1. Smiley and many other youngsters deserve taken good life. Peter has 15 hours support a week, filled with art class, walking group, swimming, which give me time to do things that need to get done. I do enjoy doing something on days he doesn't have support, but boy, I usually feel jiggered!!

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    1. For sure, and I'm the same! It sounds as though his support hours are well used, which is good to hear x

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  2. I winder why it's so difficult for the government to finance an adults' day program like they do for teenagers? What's so difficult to understand about the need for this?

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    1. I think it's down to the Constitution - all children in Ireland have the right to an education (I was one of many parents who tested that in court!) but adults with disabilities have no constitutional right to services as far as I understand.

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  3. It's great to get more of an insight into smileys day. With all the lovely happy photos we see its easy to forget just how much more has to go on behind the scenes. I hope she continues to have a happy time with lots of friends and company. Xxx

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  4. I enjoyed my peek into you and Smileys world, I do hope you both can get what you need x

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    1. Thanks auntiegwen, and thanks for reading - especially as you've probably read many posts like this one before! x

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  5. I so hope it can continue, and you are doing what you can to make that happen, on top of everything else you already do. You're amazing xx

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  6. It was lovely to get an insight into yours and Smiley's day. Of course she needs the company of others, everyone does, otherwise we'd all be very lonely and that's such a horrible feeling. Plus, doesn't it just make your day when you get to interact with and see other faces. I hope she can continue to have her adult programme, no doubt you'll make it happen for her x

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