Posts Tagged "babies"

The Special Needs Sleep Guide or “Sleep? What the hell is that?”

Posted on Jan 7, 2015 | 2 comments

The Special Needs Sleep Guide or “Sleep? What the hell is that?”

It’s 5.30 AM. Why am I up, you ask? If you are a parent to child with special needs you probably already know. May woke at 2.30 and mewed/cried/sobbed for attention until 3.45. I’m trying to retrain her to soothe herself to sleep so I let her “cry-it-out” a method of sleep training used on babies. You let them cry and extend the amount of time in between going in to comfort them. I lay with May the first time, but after that I held her hand or stroked her face. I left her alone and I waited in my bed for the first sound of her complaints which always seemed to...

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What mountain would you climb for the perfect toy?

Posted on Dec 23, 2014 | 1 comment

What mountain would you climb for the perfect toy?

Does the perfect toy exist? What if your child is disabled cognitively and physically like mine is? Check my bank account. I’ve wasted a lot of money trying to solve this conundrum. And yet, we did find the perfect toy. For my daughter, this is her monkey toy. It is a jungle symphony of noises and songs. It is bright so she can see it easily, sturdy so she can smack it at will and has chunky components that activate easily despite her physical limitations. Yes, perfect. She’s had it since she was a baby and it’s lasted five years now. That’s an amazing lifespan for a...

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Why I love my half-brained baby

Posted on Dec 1, 2014 | 6 comments

Why I love my half-brained baby

Praise be all parents who lovingly pack a hospital bag for their child knowing they will be wheeled into surgery the next day. On Sunday night, I packed up my daughter’s clothes and nappies and all the essentials — plus her Minnie Mouse pillow and treasured, baby blanket — for her hip surgery the following day. Finally, I packed her favourite toy, a monkey music toy. On the bottom, I wrote in big letters “Property of May”. Last time she had surgery, someone took her monkey toy and placed it in the black hole of the children’s toy room in the ward. I...

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800 seizures a day: our epilepsy story

Posted on Nov 14, 2014 | 3 comments

800 seizures a day: our epilepsy story

This week on the Firefly Garden, bloggers from around the world are sharing stories about their children and epilepsy. I suppose our story makes for pretty grim reading. But years later, with May’s seizures down to 1 to 2 a day and causing her very little distress, we feel it is a triumph. Here is the post and make sure to click on the links at the bottom to read other parents’ stories: My daughter, May, was born with a severe brain injury. She had seizures every day, from birth. She has taken, at various points, anti-seizure medications including Phenobarbital, vitamin B6...

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This is the most disgusting thing you will read today

Posted on Jul 1, 2014 | 23 comments

This is the most disgusting thing you will read today

May is five years old now. She no longer fits on those baby changing tables, and she is only getting bigger. If you leave your home for more than an hour, chances are you might need to use the toilet. May does too. When we go out and she needs to be changed, we have no choice but to place her on the floor of a toilet. We wouldn’t put a baby on the floor of a toilet. What a revolting thought. We wouldn’t choose to lie about ourselves on the floors of toilets. Or, allow our toddler to eat a bit of food he drops there. But, there seems to be very little drive to provide sanitary...

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