The Big Question

I'm bursting at the seams with posts to write. I want to tell the whole world all about our life with autism. But it's so hard to know how to break that down. So, I'm starting with the basics.

What is autism?

Leaving the medical explanations, speculations, and gobs of research behind, here's what autism is for our family, in the 3.5ish months since diagnosis day.

Autism is energy. Bug is under sensitive to proprioceptive and vestibular input (the two senses you didn't know you have), meaning we have lots of spinning, jumping, running, crashing, etc. in our house. He once took grandpa for an hour+ walk around beyond the neighborhood, then came home and jumped on his trampoline for at least 15 minutes.

Autism is a roller coaster. Some days Bug seems like any other toddler. Others, the difficulties that autism brings take over the day completely. All toddlers have good and bad days, but autism amplifies those highs and lows a few times.

Autism is tears - from everyone. Sometimes the hard days make Bug cry a lot. Sometimes Mom and Dad cry from pride at Bug trying or mastering something new. Sometimes Bear cries because he has to hang out in the safety of his crib alone for a bit while we pass through a meltdown. Sometimes we just cry for no reason!

Autism is nonstop learning. Every day brings us new lessons in what Bug feels and needs. Bug's therapies include Mom and Dad learning different strategies and activities to help him learn and grow. Beyond Bug, the autism world is a big one that I feel I've only barely caught a glimpse of.

Autism is a battle. In Utah, autism treatment isn't covered by insurance. Period. There are a few lucky privately funded insurance plans that cover treatments (that's something!), but most of us are on our own. If a child has another condition or diagnosis that is covered, awesome - there's a way to get some help. But Bug doesn't have another diagnosis. Then there's the whole battle against ignorance. We're fortunate to not have faced this much so far. But it's still so sad how many people think autism is made-up, or a plea for attention, or a conspiracy by doctors and drug companies fueled by greed (yes, people actually think this).

Autism is joy. Even with all his difficulties, Bug is the happiest, sweetest toddler we know. His smile and laugh are infectious. He finds joy in the simplest of things. We find joy with every improvement he makes, whether it's a baby step or a leap forward. We can see the joy the boys have when they are together, even though they don't understand each other very well yet. We see Bug bring joy to his family, friends, and even random people he meets in passing.

Autism somehow just makes the sweet things in life even sweeter. Autism makes Bug sweeter. That's why he's our bucket of sugar.

Lessons from a Meltdown

One of the first things you quickly learn about a toddler with autism is that sometimes they go beyond the realm of tantrums into a Meltdown. Yes, capital M Meltdown. We saw these before we ever had a diagnosis, but didn't have a name or explanation for them.

The basics: toddlers often have tantrums, we all know them: the child doesn't get his/her way, and starts yelling/screaming/kicking/whatever it takes to try to manipulate the parent into a desired outcome. The key here is that the (neurotypical) toddler knows what he/she is doing. The toddler is actively trying to change things. A toddler with autism may start with a tantrum, but eventually gets to a point of no return where it's not even about a desired outcome anymore. He/she loses conscious control of the situation. Read a better explanation of a Meltdown here . 

Today's Meltdown: Bug wanted yogurt. We were out. He still wanted yogurt. I made some suggestions, none of which were yogurt, and therefore were not acceptable. I could sense the impending Meltdown, so I tried to redirect, but Bear started crying and I think that's where we crossed the line. Goodbye event horizon, hello black hole.

Bug's choice of calming behavior during a meltdown is chewing on his fingers. Not biting his nails, not nibbling on the tips, but sticking as much of his hand as he can in his mouth and chewing like it's a snack. Obviously, we don't like this very much and it hurts him. 

So, the Meltdown has commenced, and with it, the hand chewing. I tried giving him other sensory input: rubbing his hands, soothing noises, massage, offering his chewy tube...nothing was working. The unfortunate reality is that the best you can do during a Meltdown is minimize damage and wait it out. So I tried to keep him from biting and tried to keep myself from going into Meltdown, too.

I'm not very good at keeping myself from going into a Meltdown. All I can see is my child hurting. Thinking about how scary it must be for him: all his senses are sending unpleasant messages and he doesn't know how to cope, how to escape the neurological barrage. In these moments I often think, "autism has taken over, this isn't Bug", because it's the only thing that keeps me from getting mad at him.

Instead, I get mad at autism. I yell and scream at it in my mind. I demand to know what right it think it has to take over my son and cause him pain. Because the Meltdowns aren't Bug. He's made up of more than sensory issues and communication delays and social deficiencies. He's smart, loving, imaginative, adorable, and my little boy. He's amazing! And I hate that autism can sometimes overshadow those things or keep them hidden from the different people he meets.

But I know Bug wouldn't be Bug without autism. Since the diagnosis, learning more about autism and watching Bear grow up, we are starting to see just how much it's been a part of Bug since birth. I think that's the hardest thing to accept. Sometimes I may hate autism, but it's an integral part of Bug, of our lives, and it isn't going anywhere. If there was a cure for autism, would we take it? No. Because I know that despite the Meltdowns and all the other challenges Bug faces, autism has given him something that I can't yet put into words. I suppose it's like someone being born blind: they don't know what a violin looks like, but they can listen to orchestras and symphonies and maybe even enjoy music in a way that the rest of us can't because we're too busy watching the music being made instead of really listening to it.

That's my daily challenge - trying to enjoy the music, listen to its little nuances, and find ways to be thankful for autism. Because I am beyond thankful for Bug, and autism is a part of him.