A Guy in a Store

The meltdown was in full swing. A few months ago, my Kid dropped her tablet and cracked the glass. It still worked, but the crack had been feathering its way across the screen. My husband had been carrying the tablet in his pocket and forgot, and sat on it. Tablet still worked, but it was completely cracked, and Kid was freaking out. The fact that there was a new tablet at home did not alter the fact that daddy had wrecked the original one and the meltdown was occurring in the middle of a food store on a Saturday afternoon.

Any parent the world over has experienced a tantrum. The explosion, screaming, tears, throwing things, the brief pause to assess the audience and impact, and then repeat until parent caves or kid figures out it isn't working. It's all about the presentation.

A meltdown is very different, although to an outside observer, it has the same appearance. Tears, screaming, thrashing...but no pause for effect assessment. A meltdown is triggered by an inability to deal with something, either sensory, cognitive, emotional or mental. It's like the breaker on the fuse box trips. In the middle of a meltdown, the child is completely unaware of surroundings, behaviour or reaction-s/he has hit maximum capacity and blown. Until the meltdown winds itself down, reason, discussion or resolution are impossible. You can try hugging it out but you're probably going to end up with a nasty bruise or three. Quiet and space can limit the meltdown duration, but once it's on, waiting it out is the only option. On more than one occasion, my Kid has had no recollection of what has transpired in the previous minutes (or hours). She's lost in the overload, fighting to find her centre.

So there we were, on a Saturday afternoon with a 10 year old child in the cart in full blown meltdown. We already ignore the dirty looks of the 10 year old, almost 5 foot tall child in the cart. If we get the errand completed faster with her riding in the cart playing Minecraft, then ride she does. A man was standing trying to get around the firestorm to buy salad dressing. I moved the cart and apologized.

"No worries, I have a 3 year old. I guess I have that to look forward to." He walked away before I could explain.

I've started explaining. I'm facing the judgey people head on and explaining what they are seeing. Sometimes, I say "She has special needs and it's been a long day." When others make rude comments in front of my child, I fix them with my best mom glare and say "You know that was out loud, right?" One cashier patted my hand and said that she was also the mom of a special needs child and we shared a look of profound sympathy and understanding. People judge. That isn't going to change, but if I can make one person re-think their assumption, then I'm furthering understanding.

Since the meltdown was showing no signs of abatement, I headed to the other end of the store to grab items to expedite the trip. The same man who had been buying salad dressing was now in the dairy aisle and he caught my eye and nodded his head in the direction of the continued meltdown berating of my husband and the broken tablet.

"I'm being the responsible parent, I walked away," I quipped as I grabbed the cream cheese and yogurt.

"What's the big deal. It's a tablet, not a crisis," he answered, looking again in the direction of my family.

"She was born with fetal alcohol disorder because of her birth mother's alcohol use. It causes challenges and little things are big things. This was a big thing," I answered. Was it any of his business, no. But he hasn't asking to be rude, he genuinely seemed to want to understand.

He listened carefully, and then thanked me for clarifying. And then apologized because he had been thinking it was indulgence rather than overload that was causing the meltdown. "Parenting is tough," he said.

"Yeah, but worth it," I answered. He nodded and went on his way.

My daughter's life feels like Costco on the Saturday before Christmas every minute of every day. She has to fight so hard just to do basic tasks. She manages to keep it together at school and then meltdown when she's home and safe. When stores are too bright, or too hot or too loud or too busy, she can't process and she overloads. To the outside world it looks like she's pitching a fit. I've learned it's actually a cry for help. We ride it out together.

And so, I will continue to advocate, educate and enlighten. Judge me if you will, but you need all the information first. Education breeds understanding and acceptance and that's good for everyone.

Temperature

One day last week when it was about 30C here in Canada (That's 86F) and humid enough to make my hair look like I was  Chewbacca's cousin, my daughter came downstairs in a sweatshirt, a pair of jeans and socks. SOCKS. My kid HATES socks. Similarly, in winter, when it's -30C (or -22F) she was heading out to school in crop pants and a short sleeve t-shirt. Temperature regulation is wonky with her ARND.

The first time I met my daughter, she was about 15 hours old. She was in the neo-natal unit, and at 8lbs, 2 oz and 24 inches long, she towered over all the preemies in the unit. She was also having a significant hissy fit. She had a full head of hair, and was in a hoodie sleeper with the hood pulled up. I think it also might have been a bit short for her, but in any event, she was unimpressed with the hoodie. She was pitching her head back and forth and crying.  I looked at her for a minute, and she stared right back at me. I reached over and gently pulled the hood down. She settled immediately with a sigh and an impression that clearly communicated "Finally, someone gets it." She was too hot.

Keeping a hat on her as an infant was a challenge. I finally knit a hat that looked like a Dutch cap that fit into the bunting bag hood. It wasn't technically ON her head, so she tolerated it. As she's grown older, kitting her out for winter is a challenge. Many of the winter gloves and mitts bother her hands, or are too hot. She likes my handknit socks because they are knit from the toe up and have no seams. Many of the winter hats have seams that bother her. I've picked her up from school a few times in the middle of winter, and she has neither hat nor mitts on, and her hands and ears are red. Socks are the first thing to go when she gets home, and our house isn't that warm. And don't get me started on winter boots...

She can overheat quickly in the summer, and I have to watch her. Not a fan of water, she dehydrates and then she gets dizzy and flushed. She's also not a fan of sunscreen because of the feel on her skin. Since my mother died of inoperable skin cancer, sun protection is non-negotiable, so finding one she'll tolerate is a challenge.

Right now, we're in a flat-cap hat phase, so at least she's wearing a hat in the summer. Now, granted, she's wearing it sideways, but at least it's there!

Body temperature dis-regulation is just one of the daily challenges we face with ARND, and is easily misunderstood. The health teacher once sent me home a snippy note to remind me to provide adequate winter clothing for my daughter. I responded by telling her to check her backpack...Sure enough, hat, scarf and two different sets of mitts were sitting in the backpack. They were on her when she got to school but I can only do so much!

It was much easier when she was small and I could just put the clothes on her body. She's now a tween with very set ideas about fashion. I'm not looking forward to winter and trying to get her to dress for the weather, rather than what she thinks the temperature feels like. (and no, dear, shorts over leggings are not enough layers when it's -30C and you aren't also wearing snow pants)

Sigh.