I'm always thinking about the future and what it might hold for me and my boys. In particular, I worry about the future for Alex and whether there will there be a point at which he can happily and easily function as a part of society. I look at Dr. Sheldon Cooper (Big Bang Theory) and I wonder if this will be Alex in 25 years time, with a strict set of internal rules by which he lives his life that also help him be a productive member of society.
I recently watched an episode of Big Bang Theory where Sheldon needed a hair cut. He went to his regular barber shop but his barber was in hospital and Sheldon couldn't bring himself to go to a different barber. Last Sunday we took Alex to his regular barber shop for a hair cut, but upon arriving we were informed that the barber who usually cuts Alex's hair was not working that day. Alex made it very clear that under no circumstances was he going to even sit in the chair, let alone let the other barber touch his hair. "She doesn't cut my hair. Andrew cuts my hair". Yes, we really are on a first name basis with his barber. I wasn't even going to send Alex for a hair cut this weekend but panic ensued when my mother informed me that some people who also frequent this barber for the same reasons I do had told her that the barber was shutting up shop and moving elsewhere. It took us 3.5 years to find a barber Alex can trust and as you can see from the example above, if I had lost this barber, I doubt I would ever get Alex's hair cut ever again.
There often isn't logic or reason behind any of these internal rules either. Where Sheldon might think "because it's Tuesday" is a reasonable reason to not do a particular thing, Alex might respond "because I don't". If you attempt to question him further, for example asking "but why?" there is no witty retort or long drawn out reasoning (although I wouldn't expect that from a 5 year old). It's a deadpan repetitious "because I don't".
I even raised my concerns of these concrete rules to my husband recently, fearing that they may actually be working as an added barrier in our attempts to toilet train Alex. I postulated that he may poo only in his nappy because that's just what he does and has always done; that we will most likely be facing an uphill battle to instill in Alex's brain that pooing in the toilet is indeed something he needs to do. Not just that, but to also recognise and verbalise his need so we can assist him with achieving a result in the toilet rather than his pull up.
But even though Alex makes the rules he lives by (to some extent; I am still the parent) I wonder if the rules rule him. He is the only 5 year old I know who will not go to bed unless he brushes his teeth first. He cried for 15 minutes because the mat we use for changing his nappy on got poo on it and needed a wash, and we were trying to use a towel instead. Will these rules help him function as a member of society when he is an adult, or will they cripple and alienate him?
Hi Beck,
ReplyDeleteWe have rules in our house too - I see lots of similarities between my boy and Sheldon as well. I can so identify with the haircutting story - my son's hairdresser had to retire (I almost cried) when my son was about 4yo and after trying a few others I had to resort to cutting his hair myself - I'm still doing it 10 years later.
My son is highfunctioning and mild in his autism but the type of reasoning you talk about is still very familiar - a grain of hope though, I noticed some small improvements with some things at the end of last year. With some things (not everything) I can now reason with him and he might try to change his behaviour. Previously, even when he understood my reasoning, he still couldn't change, and would become very agitated when I pushed. So I have hope that things will get better. Take care xo
Rules build their own grooves... If Sheldon does the washing on the same day every week, he will eventually end up with exactly eight pairs of socks. At that point, he can't put off washing for tomorrow, because he'll run out. As the rules become interlocked in an intricate web, a deviation will tend to cascade to stress some time later, maybe hours, maybe days, in ways not obvious at first thought. That makes any rule change potentially a big event.
ReplyDeleteI don't know, maybe one could have meta-rules about special occasions (birthdays?) on which the rules are re-thought and rewritten, but whether that would work I have no idea. It is not my story.
Jiří
Rules are a big part in many ASD kids' lives. My son loves routine and rules too. I would suggest a visual chart for your son with numbered steps and pictures for each step in the toileting routine. This could then set him up with a new set of rules for the toilet procedure.
ReplyDeleteMy son is older and now up the high functioning end of the spectrum but he still has his visual chart (even at the age of 9.5) with numbered steps in order to get ready for school in the morning.
My son also needed to follow the same route in order to go to places in the car and would completely meltdown if we drove a different way to school. When I realised this I deliberatly started driving a different way to try and get him out of the set routine.