I knew I wanted to write a post for Autism Awareness day, but I had no clue what direction I wanted to take. While autism spectrum disorder (ASD) is a spectrum, so too are my thoughts and emotions when I reflect on our journey with it. When reading Sarah’s beautiful series on Down Syndrome, I had a moment of pause. My thoughts on ASD are not nearly as pretty, so if you’re looking for uplifting sunshine, you might just go read her posts instead. That’s not to say there isn’t happiness in what I’m about to say, but it’s more in the form of a rainbow, which comes after a storm. Let’s get to it.
Here’s what autism was/is for my family…
– Autism is your child learning to speak in a therapist’s office after a year of twice-a-week speech appointments. Followed by 6 months of just echolalia (simply repeating what he hears). Followed by even more speech therapy.
-Autism is meltdown after meltdown over any number of things. (When I say meltdown, I’m talking 40 mins of screaming, crying, thrashing, hitting, biting, etc. that can happen anywhere at any moment, for example the grocery store checkout.)
-Autism is practicing everything. Every possible situation. (ex, watching someone else open presents for a birthday party, leaving a playground, how to introduce yourself, how to have a back and forth conversation, family gatherings.)
-Autism is pushing your child outside of his box even though it makes you just as nervous as it does him.
-Autism is watching your child struggle through things other kids pick up instantly and watching him practice twice as hard.
-Autism is LOATHING meal time because you child doesn’t eat anything. (Started as sensory aversion, but at this point it is definitely behavioral.)
-Autism is living in anxiety while you watch your second child develop. Waiting to see if you are going to go down that path…. Again.
-Autism is apologizing for your child’s behavior, again, when you get those stares in public…. And occasionally from family.
-Autism is turning down invitations because the environment isn’t a place where your child would thrive. Canceling last minute because your child is having an off day. Leaving early to avoid making a scene.
-Autism is going over the budget, again, trying to figure out how to afford Speech Therapy, Occupational Therapy, Behavioral Therapy, Extracurriculars, and living expenses…. For possibly 2 children instead of one.
-Autism is REJOICING over the moment when your child said his first thought (not echolalia, not a repeated phrase he learned), and you still remember it 2 years later (“Dad, I like your hair cut”).
-Autism is CONQUERING meltdown after meltdown, finding ways to help your child cope with the world around him. (And perfecting that hold that gives your child the input needed to help him calm quicker.)
-Autism is LEARNING how to tap in to your child’s amazingly unique brain and help him develop, and learning to appreciate his obsessions and passions (presidents, specifically Abraham Lincoln).
-Autism is GROWING through the struggles, checking off goals one by one!
-Autism is APPRECIATING the little things and big moments. Like how God provides month after month to help keep those supports in place.
-Autism is ACCEPTING your child with all his strengths, weaknesses, and quirks, and teaching everyone about ASD to help them accept others as well.
-Autism is LOVING through the puzzle that is ASD. Loving the extra time you get to spend with your children. Loving the extra hugs and snuggles they want for sensory input. Loving their lack of filter in the most inappropriate moments. Loving the moments of random eye contact.
Autism and I definitely have a love-hate relationship. Some days I can appreciate all the things I listed, but then other mornings I have lots of dark and twisty thoughts about how life isn’t fair. These thoughts have been intensified lately as we are possibly going down this road again with my daughter. Won’t you join me in praying for them and all families affected by autism?