World Autism Awareness Day

For Autism Awareness Day I was asked to write a bit of an update blog, it has been about 6 years since I last submitted something and that feels like 2 or 3 lifetimes ago with at least 10 ‘once in a lifetime’ events since.

I did not know it yet, but we were starting early intervention preschool in March of 2020 and our daughter would have one week of school before everything shut down for COVID. Virtual preschool went exactly how you would expect. I am still not sure how my wife managed to turn some spare crafting supplies into full on activities, most likely using some sort of witchcraft.

We stayed the course as best we could; reading books, doing PECS, and encouraging verbalization but it was a long slow process. Unlike the delays our daughter had in her development milestones, it never felt like nothing one day and then suddenly everything. In many ways, we are still working on it and will continue to do so for many years to come, though I am proud to say that hearing her call us Mom and Dad did not take long.

Sidebar: When I was quite young, my paternal grandmother was my primary daytime caregiver. Among the many amazing memories I have of those years, I remember repeatedly asking her to read me my favorite library book, William the Vehicle King. I checked out that book from the Euclid Public Library more than any other person, so if you don’t remember reading it as a young Euclidian in the late 80s or early 90s, I am most certainly to blame. Looking back, I don’t know how she had the patience to do it but eventually I began to read it to her and then one day I told her I could do it without looking at the pages. My entire family thought this was quite clever or at least let me believe it was.

The first time Adelaide recited part of a book was from Chicka Chicka Boom Boom and I felt one of my proudest moments as a father. It was only a page to start but it meant way more to me than it could have ever meant for her. It meant that all the times I channeled my grandmother’s energy and read it “more”, our daughter had been engrossed in listening. She was finding her voice through mine.

We have been incredibly blessed since she began school. She has some of the most caring and dedicated professionals who wants our daughter to succeed as hard as we do. I could never have anticipated just how much strangers would come to mean in our lives and how much they would invest in our daughter. So, I will take this moment to thank all of our paras, therapists and teachers: we appreciate all the things you do every day for our children, you are amazing!

Our daughter has found her voice in so many other ways since then, one of the main sources for that has been her tablet. Being able to rewinding the same 10 seconds of a video might make you insane as a parent but that has been the best model for her understanding and using language. We have certainly faced judgement from family, friends, and strangers about allowing too much tablet time along with a host of other adaptations we have made in our life for our daughter. Brushing off those judgements continues to be hard, but reminding ourselves that those people do not know our daughter or her needs has helped soften the blow. 

When we first started along this leg of the journey, going into COVID after we were coming to terms with our new reality was very taxing on both my wife’s and my mental health. We were not able to find a real community with other special needs caregivers until just a few years ago. That isolation we experienced made it feel like no one else understood how we were feeling.

We have found support among other parents in the special needs class and interacting with those other families has been amazing. We have learned so much from one another, the main one was that we don’t know what is best for all autistic kids. We are all willing to share or crowdsource an approach or something that we tried and keep trying new things until we find something that works but each one of our children has needs as unique as they are. Each of us knows our child best.

Sometimes that means blocking the video of Stewie from the family guy saying “Mom” on a tablet because I am about to lose my mind if I hear those same 10 seconds again, seriously child it has been 30 minutes, pick a different video. Some kids might need to stim on a trampoline so you get a nice 1’ wide exercise one, but then your kid keeps growing and now it’s a 5’ wide one. But then she doesn’t stop growing and you definitely can’t fit a bigger one in this living room of a 1500 square foot house so you start house shopping around for a bigger place so you can fit the 6’x’9’ one you plan to buy next. And then you start to wonder how much it would really cost to add cathedral ceilings, can’t be that much right? I hate to keep you all in suspense but check back in 6 years, I should have another update ready by then or at least some pictures of the ceiling renovations. NICU Dad, Tommy