Sunday, 26 June 2011

It's Special Saturday - You know you have a disabled child when .......

Welcome to Special Saturday. The purpose of Special Saturday is to draw attention to people living with special needs and the families supporting them. By raising awareness we will create a more accepting and supportive community.

This week we were given a sentence to complete - You know you have a disabled child when ..........

Every parent will have a different answer. Most of the answers I have read have had my head nodding because even though everyones story is different we all have a lot in common. People have come up with some great answers which can be found on twitter (search - #specialsaturday) and on the Special Saturday facebook page.

My answer was - You know you have a disabled child when your main topics of discussion are medications, nappies and lack of sleep.

Our lives are controlled by medication. We know that if Cameron doesn't take his medication a seizure will follow and we will end up in hospital fighting to save his life. We never leave home without his emergency medication and his daily medication just in case we are out at dinner time. Morning and night it's the same question - has Cam had his meds? Our family and friends often start this discussion because they don't want Cam to have a seizure.

Lately I have been talking a lot about nappies and related toileting issues. I don't think mothers of neurotypical fifteen year old boys discuss their sons nappies and toileting habits. I find myself discussing nappies, pads, wet beds, washing and the associated traumas on a daily basis.

When we have our babies we expect sleep deprivation and as bad as it is you expect your child to grow out of their disrupted nights. Therefore it is a bit of a surprise when twelve years later your son is still climbing into your bed in the middle of the night. Lucky for us Cameron stopped climbing into bed with us just before he started to drown his bed each night.

I found lack of sleep is one of the most common discussions amongst mother's of children with special needs. These days I am lucky. Cameron sleeps  but I tend to sleep lightly because one ear is always on the intercom in case he has a seizure. However true lack of sleep kicks in when we have to go to hospital. I hardly sleep whilst we are in hospital and then afterwards I am on edge all the time and can not relax into a peaceful sleep.

So, there is my answer. How would you have finished the sentence?

If you have a child with special needs you could join Special Saturday and help raise awareness and if you don't have a child with special needs you could still join in and help raise awareness. The fact you are reading this post tells me you care.

2 comments:

  1. Yes, sleep deprivation is a terrible thing. It's strange how we're left to get on with it, even though it's used a torture in some parts of the world.

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  2. So true, people just don't understand.

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