It’s hard work being George. It really is. Currently he’s not diagnosed with anything and he’s waiting on assessment, so I won’t make any assumptions here. But this is what it’s like being George. (I feel the need to remind you again that these aren’t my children’s real names.)
|From Chaos to Order, by Sebastien Wiertz on Flickr. Kind |
of the wrong way round, but do you know how hard
it is finding photos for things like this?
Life is endlessly frustrating for him. People talk to him and make demands of him and don’t know his reactions unless he verbalises them, which I feel irritates him a lot. People annoy him by distracting him or breaking into his routine. They ask him to do things he has no interest in, like dressing himself or tidying up. If he’s asked to do homework he usually collapses into a heap, or turns himself upside down, or shouts or screams. He’s asked to go to school and mix with crowds of people when really he’s best one or two on one. Apparently small and insignificant things can throw him right off the rails. These issues don’t bother him every time, but they do more often than not.
Yesterday was a doozy. George was playing with a toy car in the school playground. When the time came to go home he realised he’d lost it. He wanted me to look for it, but since Ben (three) had already walked out through the gate with Oscar I needed to follow him. I told George he could quickly have a run around to look for it himself, and catch me up, but he wouldn’t. I understand the paralysing fear of doing something like that, but I still had to catch up with Ben, who’s too young to be out of the school playground without me.
|Toddler in the Middle of a Tantrum, by Stephanie|
Chapman, on Flickr. This is an 18 month old. It doesn't
get easier when they're six years old.
This precipitated a tantrum of epic proportions. Everything became a scream. He screamed at me for calling the playground a playground. (He wouldn’t tell me what it was called.) I told him I wasn’t arguing about taxonomy because I had to go after Ben. A lot of hanging on to my arm and collapsing onto the ground ensued. It’s hard to describe the horror of trying to deal with this kind of thing when you’re Aspie yourself and get completely overwhelmed by the chaos of someone else’s meltdown. The screaming and shouting and screaming from a six year old who is consumed with rage at not being able to control his own circumstances. Trying to walk carrying multiple bags, coats, and a guitar, with a tantruming child hanging off one hand and a three year old trying to hold the other. The world condenses down to a place where the only thing that exists is your child, screaming and kicking and slapping and collapsing on the ground and shouting at you and becoming enraged at anything he can get a hold of. ‘Stop walking like that, mummy.’ ‘You’re making me do x, mummy.’ ‘You’re making me bored, mummy.’ It is impossible to adequately describe how enveloping and affecting this behaviour is. By the time we had got across the field I was at the point of beating my head into the conveniently place electrical substation. I needed to have my own meltdown. Instead I managed to hold off until we were in the house where I went into shutdown mode, where I could barely speak or move for the next few hours.
These kind of meltdowns don’t happen every day, but there is always something. Here are a couple of examples of what it’s like to be George.
Sometimes he wants a drink of water and I can’t find the water bottle that I carry with me most of the time. He relies on drinking from this bottle. He can’t go to the tap and get a drink in a cup because – well, because it’s not what he does. He has to drink from my water bottle. He either shouts or screams or collapses.
|Cucumbers En Route to Pickledom, by Stacy Spensley on Flickr.|
George would love this. He is made very happy by cucumbers.
One day he was given two slices of cucumber at dinner (one of them was very thick). He almost always has three slices of cucumber. His response to something like this is a burst of fury and outrage. I got out my penknife and tentatively cut the thicker slice in two. Calm and happiness was restored. He’s not being awkward or picky or over dramatic. He is genuinely thrown off track by having the wrong amount of slices, and things won’t be right until the normal routine is restored.
Recently he’s been wearing black school trousers every day. One morning his black ones were dirty and I had to give him grey. His tantrum lasted through getting dressed (which I had to do by holding him down and forcing the clothes onto him) and through most of the walk to school. He had to be carried at times (and he’s quite a solid 6 year old). It wasn’t until I thought the time was right and I crouched down and hugged him very tightly that he could grow calm.
Sometimes we ask him stupid questions, like, ‘Do you want shoes or boots?’ ‘Do you want to wear socks?’ ‘Do you want sauce with your dinner?’ Often the answer is a very indignant, high-pitched scream of ‘yes!’ or ‘no!’ depending on his preference. He’s not just being stroppy. He’s genuinely indignant because I believe he expects us to know.
If he can do things as he wants to things go on pretty well. He needs to stand in the right place to brush his teeth, use the right toothbrush, always with the right toothpaste. I don’t argue with this, so things are fine. But if I told him he couldn’t stand on the left side of the sink leaning on the bath or if I suggest it’s late and he just go to bed without worrying about his teeth, he would get very upset.
It gets harder when we go out of the house. He can be very talkative but he doesn’t like speaking to strangers. A lot of interactions are made non-verbally. He’ll hide his face or stare at the floor. He makes a thumbs up sign for thank you. He whispers things to me to tell other people. He points or nudges or obliquely indicates things.
|Waiting Room, by Robert Couse-Baker on Flickr. George would|
be under the chairs by now, with his face against the floor
or the wall.
Even worse are medical appointments. I can’t get him to open his mouth to the dentist and I’ve never dared making him an official appointment. He spends most appointments hiding under chairs or screaming. At a recent speech therapy appointment he spent the waiting period mostly under chairs. He had to be manhandled into the room, where he stood in the corner with his face to the wall shouting, ‘Stop talking, mummy,’ until he switched to hiding behind some chairs.
He left that appointment by rolling on his side out of the room, down the corridor, and across the reception area.
There are a lot of things to be grateful for about George. He is the most sweet and loving child. He is creative and kind. He’s doesn’t seem physically sensitive like Oscar, and he’s not particularly picky over his food like Oscar is either (the list of things that Oscar won’t eat because of taste or texture is very, very long, whereas George will eat olives and couscous and houmous and drink concentrated lemon juice, neat.) He is wonderful and imaginative and generous. His smiles are like the sun coming out. He gives spontaneous hugs and gifts of food or flowers. He is the kind of child who can roll out of an appointment with complete aplomb, and I think that’s the kind of thing to which we should all aspire.