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.
I'm sorry to hear you are also having sleep issues. What we are currently doing is concentrating in getting our son to stay in bed, so we can come and have some space. He has a lamp and a book. I'm also getting a weighted blanket.
ReplyDeleteI did my mini project on sleep during my degree. Had someone spoken to you about diet?
Best of luck with it all.
Yes, we had been concentrating on getting him to stay in bed, over Xmas we used story CD's so he would lay in bed and listen, that gives us some space. The sleep clinic mentioned weighted blanket as an option, so I think we will be giving it a go too. No one has spoken to us about diet, but now you've mentioned it I will bring it up with the worker on Wednesday. Thank you xx
DeleteYou are only able to do your best in difficult circumstances, try to hold on to that thought at very low moments-it's what I try (sometimes it helps.). You may already have tried this, so apologies if so, but how about music CD's at 'bed time'-any gentle soothing music might at least keep things calmer? It has worked for friends of mine.
ReplyDeleteSorry you are going through a difficult time, it sounds exhausting. I hope you get some good helpful solutions at the sleep clinic x
ReplyDeleteI really feel for all of you, I hope the sleep clinic are able to help.. I had problems with my son when he was little, so I understand how exhausting it can be xx
ReplyDeleteThank you everyone for your supportive words. We did try music CD's but he's into pop music and it wasn't particularly calming. Hence we do story CD's instead - He loves Famous Five x
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