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.

Where To Start

Where do I start?! This little guy is our Bug. He just passed 30 months and has taken our little family of four on quite the ride the past 7 months. We also have Mom, Dad, and newborn Bear.

Let's first rewind to March. Bug's annual well-child appointment was coming up, and we knew the doctor was going to be asking about his speech. We talked about how he was slightly behind at his 18-month appointment, and we'd follow up when he turned 2. Here he was, a few weeks away from 2, and we knew he hadn't improved much. We sat and made a list of the words Bug had. We even included animal sounds. It was a very short list. We knew that at 2, he was supposed to be starting to use two-word phrases. We were so far from that.

Time for the appointment...the doctor said Bug is healthy and such a smart boy, but we should get a speech evaluation done. No problem, that can be done right across the hall at the children's rehab office. Hearing assessment done first - perfect hearing, like we thought. Bug loved the speech evaluation: he got to play the entire time. We did a lot of talking about Bug's behavior, habits, likes/dislikes, on and on, in addition to details about his communication. The therapists loved him.


After just a few days, we got the full report. We knew he was behind, the evaluation was just supposed to determine how far behind. Severe mixed receptive/expressive language disorder. Definitely more far behind in expressive. Age equivalencies, percentile rankings, suggested treatment, good prognosis.

The two words that stuck out in the five-page report: Severe. Disorder.

We couldn't believe those two words would be associated with our sweet, smart, adorable Bug. That's when the blaming started. Maybe we were doing something wrong, not doing enough, and that's why his speech was behind.

Luckily, we have a wonderful family who helped us get over that. It's nobody's fault that Bug is behind in speech. It's just something that happens to kids. Him needing speech therapy is not a negative reflection on our parenting. If anything, the fact that we were looking into therapy was a sign that we're being good, caring, supportive parents. All of us will work together to get him caught up.

Next up, a feeding evaluation. The speech therapist felt that with his very limited diet, we should get that done to see what was up. More guilt. Another report, this time six pages. Significant feeding difficulties. He didn't have motor issues impeding his eating, just behavioral, and maybe sensory, so guess what? let's get that checked out, too.

Want to know something fun about insurance? When a child is delayed, without a medical diagnosis (like a chromosomal abnormality, physical disability, etc.), insurance doesn't have to cover treatment. They cover evaluations to a degree, so you can know what's up, but if a kid is just delayed without a "good" reason, that means they'll catch up on their own!! You don't need therapy coverage if they'll eventually catch up!! (Sarcasm exclamation points.)

Back in February, a friend gave us the contact information for Early Intervention, a state agency that offers therapy services to every kid in the state who needs them. Since it's significantly cheaper (as in free, compared to hundreds of dollars per session) than private therapy, we needed to check them out. We were so worried that Bug wouldn't qualify, that he wouldn't have a strong enough need for their services.

Evaluation day for EI came one week after Bear's delivery. By that point, we knew exactly what questions they were going to ask about Bug's development, and what sorts of assessing they were going to do with him. We'd already done it all with the speech and feeding evaluations. We handed over those results. And, surprise, Bug was being cooperative and showing off all his strengths. It may sound weird, but we were hoping they would get at least a small glimpse in person of what his behavior can be like every day, instead of us looking like fools saying "he's not always this happy! or cooperative! he really does need help!". Finally, he lost patience and started melting down. Our service coordinator said "You all certainly need the help we can offer. You are the most patient parents I've ever seen. We'll make sure he qualifies, no matter what his tests right now say."

The EI evaluation left us feeling nothing but relief. We were finally going to get Bug the therapy he needed, and we'd get the tools we need to help him be happy, healthy, and developing as he should. EI planned to get Bug an occupational therapist, who would work on feeding and also assess his sensory needs, and a speech therapist, who would work on developing his language skills.

We had the feeling that maybe his sensory needs were the root of many problems, and we were able to get in a last-minute opening with a private OT to do a sensory evaluation. Why not, the more we know about what's going on with Bug, the better. No big blows with those results, Bug definitely has sensory processing disorder. This is all along the lines of what our EI OT found, and what we had guessed after lots of Googling and reading.

Through Mom's work at schools, she was able to work with some special-needs kids. Inevitably, she'd get a question from one of the other students, something like "Why doesn't he have to sit and do this activity? Why is she doing that, I thought it was against the rules?". Her go-to answer was always "His brain just works differently than mine and yours. He needs different things." Kids are amazing, and most of them, of a variety of ages, understood and accepted this explanation.

Bug's brain works differently than Mom's, and Dad's, and Bear's, and that other kid who is his age and talks in full sentences. That's just how he is. We have learned now, more than ever, just what that means. It means we have to change the way we act and parent and teach him because his brain just works differently. It's different, it's not wrong. We won't lie and say it's easy, because it's the hardest thing we've ever done. But it's worth it, because we love our family more than anything.