Well, tis Friday once again… My favourite day of the week, but also the one I get the most nervous about. Especially this weekend. This weekend is that joyous obligatory time of the year when my parents* turn up to deliver presents and see Boy, and the start of Christmas-proper.
I get nervous every weekend, as it’s at weekends that I have Boy. At present, he’s in bed after a delightful bath. I can tell this because the toilet isn’t flushing (repeatedly), nor are the lights flashing on and off in the hall, and nor are my ears bleeding. I can also tell he’s upstairs by the snarls, growls and squeals delicately piercing thru 4 brick walls and 2 doors. This shouldn’t last long. In his natural state, Boy stays awake for anywhere up to 4 days on the trot without any sleep. During such phases, he descends into further stages of displeasure and over-stimulation, ultimately culminating in either self harm, or harm to others (ie: me!). As pleasurable as it would be to be able to live with my son au naturale, it’s not an option, and hasn’t been for 6 years (he’s 8 now). Instead every night Boy is doped with a mild dose of prescribed sedative. Still, he fights the sedative’s effect.
He hates it. I hate it. It’s horrible to watch as it’s the equivalent of Boy-sans-sleep for 4 days but condensed into 2 hours. Potentially this can result in him clawing chunks from his face, or my face, or both… in it’s mildest form he’ll punch himself in the legs (which are permanently covered in bruises as a result), or he’ll 4-finger-jab himself in the neck, which is horrendous to watch. Attempting to restrain him takes you back to the clawing result. Occasionally tho he’ll simply lie down, suck his thumb and drop straight off to sleep. If left unchecked, you can return to find he’s stripped the wallpaper and eaten the plaster (I’m not kidding). It’s a bedtime lottery that leaves me drained.
The doping can have a knock on effect through the night. When one is 8 years old, bladder control is an art form generally just nearing perfection, apart from the occasional *oops* moment, usually occurring whilst in a taxi. When one is in a drugged stupor, bladder control is nigh on a miracle, 8 years old or otherwise. This means that one has to deal with the frequent discovery that at some point between going to sleep and waking up Boy’s control has gone out the window, and he’s spent the best part of 8 hours lying in damp pyjamas on a damp waterproof sheet, under damp blankets. Occasionally one also has to deal with expulsions from the other end… and 8 hour old faeces is damn tricky to shift, especially if Boy has sleepily gone to scratch an itchy bum through night. It’s a horrifying site first thing in the morning to come across your son, smeared from head to foot, dried solid and resembling a character from The Fantastic Four.
Christmas is a particularly awkward time. My partner & Boy simply doesn’t comprehend Christmas. He doesn’t understand presents, and typically shows more interest in the wrapping paper than the presents. To him, it’s another food source… pica
frequently travels hand in hand with ASD.
The big social conventions of Christmas are unavoidable. The smallest of questions can be a kick in the nuts… “what can we get him for Christmas” ask family and relatives. My family live on the other side of the country, and I don’t possess a mode of transport suitable for more than one, so they tend not to comprehend the extent of his condition. If Boy has interests, he hasn’t made them apparent to anyone. Myself, his mother, his personal career at school, the rest of the school staff… not one of us can offer any suggestions for what could inspire his attention beyond his own personal iPad loaded with sensory apps. This we’re working towards, but the associated therapeutic apps designed specifically for people on the spectrum can run into hundreds of pounds per app. There are no delightful seasonal photos of grandchild wild-eyed with excitement, playing with [randomtoy] picked out with best interests at heart. There’s no playing with the myth of Santa. There’s no Christmas Eve excitement. There’s no getting awoken at 6am by a small voice disparate to open presents. Whilst this may sound like heaven to some, for me, it’s heart breaking. Ultimately I’d rather hear the word “Daddy” than “can I open my presents yet”, but 8 years on and we’re still waiting for ANY word, let alone something specific.
And Boy’s latest obsessive routine shift that no-one can shake him out of? Well, that’s leaving his bedroom. He won’t. He’s begun to isolate himself from everyone once he gets home from school. Not to play… just to sit wrapped in his blanket, obsessively playing with a hair or strand of thread teased from the carpet. I’ve tried everything, and the most I can get out of him is an hour a day at best. Don’t get me wrong. He’s not bored… you can hear him giggling maniacally, random expressions of delight via impossible-to-recreate-by-any-other-human sounds. The only choice is to join him in his room, where he’ll continue to do whatever is amusing him regardless of your presence, but at least he’ll come and sit close and allow physical contact. I’ve sat for hours on end stroking his ear while he squeals in joy at a speck of dust floating on the air. But when family come to visit…? You KNOW that gran / granda / aunt / uncle want to see a sign of recognition. They long to hear their name spoken, just the same as I do…
Apparently it’s wrong to feel guilty about all these things. It’s no-one’s fault, and no-one can do anything. Boy is loved, and happy. It doesn’t change the fact that I DO feel guilty. There’s nothing more painful than watching the perfect child of a friend, and realising you’re sat there wishing your child was “normal”, and that’s why I feel guilty. I don’t love him any less than anyone else loves their children. I aspire for him to develop… and I can’t help but feel disappointment when there are no signs of this happening… but it’s not disappointment in Boy. It’s disappointment with myself for being disappointed. It’s a vicious cycle. And right now, with Christmas approaching, I always feel at my lowest.
But Christmas must be done. We can’t switch it off, nor can I deprive Boy of it just because to us he doesn’t seem to acknowledge it… I will continue to sprinkle tinsel liberally about the place, and insist on a tree. It makes me feel like I’ve tried my best for him, whether he knows it or not.
I have no ending for this post. If some read this and gain anything at all from it, so be it… But otherwise this is my brain attempting to cope by sharing how I feel. Drowning, but trying to stay afloat.
*This generally consists of delightfully polite and methodistly plain conversation whilst consuming large amounts of coffee. In fact, picture a Methodist Coffee morning, but in your living room. Don’t get me wrong, I love my folks to pieces, and they me. We get on brilliantly generally. It’s just conversationally things are always a bit…erm… odd.