There has been a bit of a break since the last time I blogged. I had lots of things that I wanted to share… about S and hygiene, our sleeping woes, our successful trip to a birthday party, etc. But, S got very, very sick with a stomach flu a few weeks ago and it all fell to into the background.
What is currently in the forefront of my mind is our adventures in signing S up for gymnastics.
S is a sensory seeking child. He bounces. He jumps. He hops. He crashes into things and people. ALL. THE. TIME. He doesn’t stop moving from the time he wakes until about an hour or two after I put him to bed. Yes, you read that correctly- even in bed, he is jumping and thrashing and flailing around like a fish out of water. It is exhausting.
So, signing him up for gymnastics seemed like a logical thing to do. I was excited to see that the only class we were able to attend was in the evening and I hoped that for at least that one night a week, S would receive enough sensory input to help him fall asleep faster. Open enrollment for gymnastics was only held on one morning and unfortunately, I did not have a sitter, so S had to come with me. I already had anxiety about having S enter a building with people and then having to wait in line for a few minutes to sign up. Little did I know…
When we arrived 5 mins after enrollment opened, the line was already about a quarter of a mile long. No, I am NOT exaggerating. It was insane. It wrapped around the gymnastics room and two indoor soccer fields. As an added sensory bonus, there were TWO soccer games currently in play. Balls were hitting the barrier next to where we stood and S simply could not handle the entire situation. He was like a pinball in a pinball machine. Bouncing off the walls (literally), flailing on the floor, crying, thrashing, running away, pulling my hair, screaming, jumping, knocking into people. The list goes on. Luckily, we were in line behind another mother whose 6 year old daughter was on the spectrum, and another lady who was a special educator. They totally ‘got it’ and there was no judgement on my parenting skills from those folks.
You see, all too often, when I share S’s struggles with his autism, and my struggles in dealing with them, well meaning friends and family say “that would be hard for any child” or “all children do that”. If I were to report back this incident to other parents of typical children, our struggles would no doubt be discounted because one time their kid threw a tantrum at the mall when they had to wait in a line at checkout. But you know what? Out of what was easily over 70 children in this long line, my child was the ONLY one bouncing off the walls and out of control. Sure, other kids were whining, and fidgety. Some fussed and I heard a few “can we go now?’s” in the whiniest voice possible. Out of all of those kids, mine was the only one who lost control, and he lost it within the first 3 minutes inside the building. We had not even gotten to our place in line before the meltdown began. The mom in front of me told me it was the same way for her when her daughter was my son’s age. She said that now, her daughter just ‘shuts down’ in these situations. I looked at the little girl, and she just faced the wall and seemed to avoid all of the other people.
Let me tell you something, a typical tantrum and an autism meltdown are NOT the same. Until you have experienced both, you have no idea. I think that in most cases, a typical tantrum is when a child is upset because something did not go their way, or they are over-tired, or they are just ‘done’. They are too young to know how to process their feelings or verbalize their frustration- so they tantrum. S has these from time to time- like when I took away his lollipop, or when he wants to go to the playground at 6 am and I say no. An autism melt down happens because these children simply can’t handle everyday, routine tasks- especially if those tasks fall outside of their normal routine. They become unreachable… it seems, they even have trouble reaching themselves. It is sad to watch your child disappear into themselves and lose control of their actions. And it is infuriating when you get those looks from other parents who think you’ve simply lost control of your spoiled child.
This was not a case of my child being bored while waiting in line, and wanting to go do something more fun. This was a situation where my son simply did not possess the ability to handle the social and sensory situation involved in signing up for gymnastics. This happens at birthday parties, visiting friends’ houses, play dates and the like. It is just too much for him.
It took two days for us to recover from the 30 minute wait. Does it take your typical kid two full days to recover from waiting in line for 30 mins? No? I didn’t think so. And you know what?.. we didn’t even get into the class. It was full by the time we got to the front of the line. I thought the mom in front of me was going to start crying for me. She knew. She got it 1000x over. I didn’t even make it to the car before I broke down in the deepest sob I have had since S’s diagnosis.
So the next time your mommy friend with autism is overwhelmed by an autism meltdown, don’t say that you understand, because your typical kids ‘does that too’ or try to reassure her that it is normal, because “all children do that”; because quite frankly, that’s just not true . In fact, here is a list of 50 things you should never say to an autism parent. Numbers 5, 12, 22 and 30 are my personal favorites. I would also like to add “you are too rigid with his nap and schedule”. Yes, yes I am; and for a damn good reason.