Monday, 28 January 2013
We have been experiencing difficulties with Samuel's sleep and behaviour for some time now. These issues are mainly associated with the difficulties caused by his chromosome deletion - 22q11 Deletion Syndrome.
At the moment Samuel is having about 5-6 hours sleep each night. He may have the odd night where he has slightly more, but this is usually through shear exhaustion and only ever "one-off's" so he never actually catches up.
His sleep deprivation has a knock on effect. He is struggling to get up for school, and his behaviour has dipped significantly. He is unable to concentrate for any length of time at home or school. He is slow to respond to instructions and has no energy. He's like a zombie.
The rest of us are all suffering too. Samuel's refusal to go to bed means that Gary and I are having to stay awake later than we would like to. The noise and commotion that happens when we try to get Samuel to bed disturbs the younger children. Last night we had all three of them awake at midnight.
We have asked for help with these issues, and on Wednesday I have an appointment with "sleep clinic" to discuss options available to help Samuel get some much needed sleep. Obviously we have already exhausted the most common suggestions to get children to bed, as well as some less common. Nothing has worked yet.
My main concern is always Samuel's wellbeing, and at the moment I don't think he is well. My husband described him as "an empty shell of a boy". That pretty much sums it up.
I've been feeling extremely emotional lately. It's heartbreaking to see how anxious he is about going to bed, but also frustrating that he cannot explain why he can't sleep.
I wouldn't say that I feel a failure because I can't resolve his sleep issues, but I do feel very helpless.