As in previous posts you will be aware of Samuel's 22q11 deletion syndrome and so this leads me to a more in depth insight into another challenge we have - bedtime.
Usually we start to approach bedtime by Karen asking Samuel to get himself ready, this is usually about 8:30pm which is a reasonable bedtime considering his disability and his massive need for at least 10 hours sleep. Karen by this time has done special time and calm down time with Samuel, after Oliver and Isabella's have gone to bed. Then at 8.30 Samuel is asked to pop his pull up pants on (another condition associated with 22q11 is bed wetting).
After a few cave boy style grunts in which boy child demands mum goes up with him and finally striking up a deal to pop up in 5 minutes he starts moving like a snail in reverse, and slower than a Stannah stair lift he eventually lands safely in planet bedroom. Barely 3 minutes elapses and Samuel seems to come down quicker than a cat on a hot tin roof, with battering ram style he falls through the door, "mum mum" he bellows, "you said you were coming up". Karen, to avoid in house riot takes Samuel back upstairs and does the goodnight routine again.
After 5-15 minutes we hear the pitter patter (thud thud) of the boy child. We now know he is on the warpath to destruct the adults evening, which in Samuel's eyes seems to be a new covert mission. So the fun begins (sarcasm). Karen asks Samuel to go back to bed, "no" comes the reply, Samuel you need to go to bed, no he replies again, so the consequences kick in, Samuel if you do not go to bed then you have lost tomorrow's use of your netbook, still a refusal and this continues until we need a removal firm in as he has had everything confiscated for the following day. At that point he would go upstairs, putting all the lights on, and sit there until eventually falling asleep.
We have scrambled, argued, agreed, disagreed, asked him, shouted at him and slowly but surely we noticed bedtime was getting worse. Then came the massive dip, we had run out of so many ideas we asked Samuel what would keep him in bed and calm him and help him sleep. Samuel's answer like a mad scientist but a sane one in the working had said a DVD please mummy, well puppy dog eyes and a flag of surrender from us we agreed, we wanted to try anything, so after the film had finished Karen went to turn the film off and so our new fun began.
Samuel came trotting down after 5 minutes and said he could not sleep and would not leave the front room unless mum went and curled up in bed with him. Obviously mum refused. We have 2 toddlers that nod by themselves so mum was not making a rod for her own back. Samuel responded in gladiator style "then you shall not move me, I will fight till the end", and fight the little groat did. We asked several times for him to return to his bed and got told no deal each time, this led us to try the silent treatment, which resulted in Samuel going hypo and noisy causing noise and chaos for 3-4 hours.
After we finally admitted defeat we decided to go to bed ourselves at midnight and sure enough cave boy scurried upstairs and into bed, after we had closed our door he was up and flicked his light on until I got up at 3 to go to the toilet. This happened night after night and the demands got more and more, we were just at a total loss as how to deal with this and the later Samuel stays up it makes it an awful atmosphere in the morning as he refuses to get up and is angry and very aggressive.
Finally we had a date with the sleep clinic as we were at breaking point. We needed help and like every good parent knows asking for help is a sign of strength and togetherness. We did not want to keep going how we were, I must add in that one night Samuel had punched me in the mouth so yes it really had got that bad.
Our appointment arrived and Karen went to see Mr Sleep Doctor, he has agreed to come and survey things and see if we can some how arrive at a plan of action. We hope so, we need it as does Samuel as the stress at times is so hard and Samuel will eventually become ill because of severe lack of sleep.
So I have added another chapter of Samuel's constant struggle with a disability that so few people know about or have any answers to. We as parents must keep plodding along and doing what we do best, that is never giving up on Samuel and always fighting to raise a tiny bit of awareness.
Thank you so much for reading it means the world to me..... Gary
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