This post has been rumbling in my head since Saturday, but today something else happened and I decided it had to be written today. (Plus, it’s that or clean the house…which really needs to be cleaned but, you know, I’d way rather write for you guys!)
When it comes to M’s diagnosis, I decided that I would tell people about it on a “need to know” basis. Teachers & administrators at school know, of course her health team (physical & mental), and friends and family that are with her regularly. But when it comes to dance teachers, soccer coaches, etc… I decided only to tell them if her behavior or area of delay became an issue. This isn’t always as easy to define as you would think, or as I assumed.
Dance: last year’s teacher knew, because M had a rough start and refused to attend class if there was a sub, and also because she became a good friend and had some experience to offer advice. This year her new teacher does not know, at least not yet.
Sunday School: all of her current teachers know, because transitioning to this class over the summer was very difficult for her and she still often has a hard time. Last year they did not know, because her behavior was relatively age appropriate, though she did take her sensory bag.
Soccer: last season’s coach did not know, but honestly he was a jerk and I’m not sure I would have told him. He did yell at us for being a few minutes late to practice a couple times until I told him she had occupational therapy right before every practice…he kind of left her alone after that. This season hasn’t gone quite as well and I’m on the fence about telling the coach.
Last Saturday she refused to play at the beginning of the game insisting she didn’t want to play anymore (after I just dropped off the check to pay for the season, of course!) She was losing control a little because big sister was going to spend the night with a friend that night, so she was anxious about the upcoming separation & routine change. I could tell he was frustrated with her, and I was too! After she started playing she did great as always. She is extremely fast and scored 7 goals that game. But if a teammate scored a goal, she cried & wanted to quit. When she was goalie she stopped 8 goals, but 1 got by her…so she cried & ran off the field! (K kept score of M’s accomplishments for her). She is just not good at being part of a team…which it would be appropriate to be frustrated about, except the fact that she has Asperger’s. Not only does she lack social skills and awareness, but she is social/emotionally on the level of a young 2 year old. A few parents (from the other team) commented about her getting upset in a way that let me know they thought there was something wrong with it. I just let it slide…it’s still hard not to care what people think but I don’t know them, and they don’t need a label for my child. But her coach? We will see. If she continues to display behavior that is not developmentally appropriate for a neurotypical 5 year old, I may give him a heads up since the way she is responded to can help diffuse or aggravate the situation.
In school, a parent who is a friend and also has a child with special needs knows about M’s diagnosis, but none of the other parents do. I never even thought about telling them. This morning a girl from her class ran up to her before drop off and M grunted, growled and hid behind me (which she also did yesterday). I tried to put it off with a playful “oh, looks like another Monday!” (Though of course I was embarrassed!) Then I made the mistake of asking M what was wrong.
“I hate her!”
Oh, great. The bluntness and lack of desire to socialize of her Asperger’s together with the anxiety of school drop off made for a great mess today. What I wanted to say was:
“I’m sorry. M has Aspergers.”
What I really said was:
“She’s having a rough morning.”
The meltdown began and she tried to run away back to the car, twice. When we got to the school she did let one close friend give her a quick hug (even if she didn’t reciprocate…yay for hugs!) But anyone else who even looked at her got the evil eye and a growl, and she hid behind me. She only agreed not to run away because I told her she could go for a walk with the dean when she went to class (which is what she does when she has a meltdown or is too overwhelmed in class).
Do these parents need to know? I’m not sure. On one hand I don’t want them thinking my child is a jerk. She isolates herself enough as it is, I don’t want the parents to treat her coldly, or tell their children to avoid her, or for her to be the one who doesn’t get invited to parties. (She does not do well with parties, but sometimes it’s just the being invited (or not) that counts.) On the other hand, if they know she is autistic, will that help things? Or make them worse?
Deciding what really does make a need to know is not only subjective, it is just down right hard to decide…especially when the subject is something as precious as your child and as looming as a label.
I am open to any thoughts, advice, or stories of similar situations. Although I have done a lot of studying on Autism and can tell you all about ABA or what to do during a meltdown, it is still pretty new to me and the things that are hard personal decisions that have little to do with facts or figures, like who to tell and how, are still pretty uncharted territory for me. Surely nothing about having a child with autism, or any special need, is easy. But, it is certainly worth it!