Monday, 31 December 2012

What to Say and When to Say It

Something I have struggled with for a long time is the decision of when I should let someone know that my children have autism.  There are many circumstances where I have to inform people- obviously school, babysitters, etc are a no-brainer.  I am talking about when we are out in public- when the boys are overstimulated and having a meltdown, or when their behaviors are just, well, unusual.  I don't know if I need to explain, or if I should just let it ride.  While we were on vacation, I let it ride the entire time.  We didn't encounter that many people anyway- mainly at the Wright Brother's Museum, and I'm not gonna lie, we did get some dirty looks there.  Jack was not naughty- just extremely exuberant, and very effusive when it came to talking about airplanes- of all types.  I guess it's frowned upon when your child decides to demonstrate said knowledge during a formal presentation to a group of all adults on Christmas Eve.  Oh...well.  I knew I would never see those people again, so I can live with that. 

It's acquaintances, family members of close friends, neighbors, that I have a tough time with.  I don't want to walk around advertising to everyone I meet, however, I don't want people to think my kids are just naughty or out of control.  This is apparently a common problem, otherwise, these would not exist:

I was presented with one of these cards a little over a year ago by the receptionist at the boys' OT.  She has a daughter on the spectrum as well.  And I was bringing both boys in by myself every Saturday for their appointments- between the transitions of getting out of the car, taking off shoes and jackets, detaching from toys, and then leaving mom, there was a meltdown at almost every session.  I mean multiply those transitions x 2 and it's pretty much inevitable if your child has autism.  There are many parents whose kids are seen at the OT who are familiar with autism, but some are not.  And I was getting looks.  I get looks a lot.  I was offended by the card at the time- as though the receptionist was saying the boys were being "bad".  I get it now.  Just had to come around a bit.  I have never actually given one of these cards out, but actually think it would be fun to hand it to someone who is giving me the evil eye on the playground when my son won't stop spinning the steering wheel because he is obsessed with spinning things, and freaks out when another child tries to join in.  My kid can share!  Just don't touch something in his area of interest! Ha

Actually I take that back.  We went to a close friend's daughter's birthday party yesterday- at a bounce place.  After about 20 minutes at the party, my kids were parked at opposite ends of the facility- one continuously spinning the propellor on an aircraft carrier in the toy area, and the other chowing down on potato chips while daddy watched the football game.  Neither of them had much interest in socializing- although Jack did make sure to find the birthday girl and wish her a happy birthday.  Also, Jack handed off the aircraft carrier to another little boy after awhile and moved on to some robots- score one for Jack!  At these events, I bring a cooler- I have their gluten/dairy free pizza and cupcakes.  I am glad they are available, so we can go to these events relatively pain free.  But people are always curious.  I wonder if they think it's odd that I give Jack at least 3 opportunities to leave the area when the birthday song is coming up- he's caused distraction from the birthday kid many a time when he screamed at the clapping that is inevitable after the singing.  Yesterday I was so proud of him- he opted to cover his ears b/c he wanted to be there for his buddy.  Should I explain these alterations in "procedure" to the people sitting next to us?  I chose not to.  Then Nathan saw the balloons tied to the backs of all the chairs and wanted them- like really wanted them.  Nate doesn't often want something, so I handed him an orange balloon- feeling like a nice mommy for untying one when it wasn't time yet.  He looked at me like I had three heads and proceeded to cry and then try to rip a BLUE balloon off of the chair next to him.  I switched them- guess I know his color preferences now for the first time ever.  After people started getting up from the party table, he proceeded to walk around the chairs and "free" all of the blue balloons.  He wanted to hold the string for awhile, but then he wanted to watch the balloon float to the ceiling.  One time he let go and my friend grabbed the string so he wouldn't "lose" his balloon- a small meltdown ensued.  Then my friend's cousin, who is tall, grabbed the string for him and handed it back to him.  Nate let go again and the cousin handed it back to him again, after the balloon reached the ceiling.  This continued for about 10 minutes, release, grab, hand back, repeat.  My friend's cousin is a great sport. 

I looked at my friend and expressed to her that it is at times like this that I wonder if I should just let the family member know why Nathan is so hyperfocused on such a simplistic activity.  This would be common for a baby, but Nate's three.  I still didn't tell him, just talked to my friend about it.  She caught up with me a few minutes later and let me know that she told him- and he said, oh, ok.  He said he had friends with a child that has autism.  But he didn't think anything of Nate's behavior really- not until he knew.  So was it necessary to let him know?  Probably not.  I guess I am still struggling to find that line. 

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