autism speaks

The A-word /  by jen geigley

Yesterday, our son Bowie was diagnosed with autism spectrum disorder/ASD. And today nothing is different, yet it sort of feels like everything has changed. It's just a word. The A-word. And it might be a tough word to say at first but I think we are just about to break through some doors, help Bowie in brand new ways and discover more about him. We are excited about the future. He's a fantastically cool, intelligent, fascinating boy and I am oh-so-proud to be his mom.

It's a tiny bit ironic that April is National Autism Awareness Month, because our family is feeling very aware. And that is what is pushing me to write this blog post. I'm an autism mom – technically only since yesterday – but really I've been one all along. And while my viewpoint on this might be super fresh, this is the story of the beginning of our journey. We don't feel the need to hide the results of Bowie's evaluation yesterday. We think it's better to share. It's not a scary thing, or a sad thing – it's our everyday. It's so many people's 'normal.' And we are ready to do more for him and learn more about him. Like our amazing doctor said yesterday "Autism is just a word, just a diagnosis but it doesn't change who Bowie is. He's a great kid ... he has a great name."

First off, I have to tell you that Bowie is my heart. If you know us or have seen us in person, you already know that he and I are stuck together with super glue. Pretty much all of the time. He is extremely cute and funny and sweeter than sugar. He spontaneously showers me with hugs. He will hold my face in his hands and smoosh his cheek into my face. He is very smart, caring and has memorization skills that will blow your (average) mind. He used to be very quiet but now has started chatting much more and honestly, he is a delight to be around. I love listening to what he has to say. And he has a lot to say.

Bowie was also a delightful, perfect little baby. He loved to be snuggled and was affectionate. He smiled and laughed. Did he look directly at us ... in the eyeballs? Not always. I remember him staring at the windows in our bedroom when he was nursing or when I'd rock him to sleep and I used to think he could see ghosts. I wasn't sure he could hear me sometimes. We sought out help for Bowie early on because he had a significant speech delay as a toddler. We weren't super worried though. He was doing well in so many other areas that it wasn't a huge concern at first. But by age two, he still hadn't said typical first words like 'mama' or 'dada' ... and I wasn't sure he ever would. Our pediatrician set up in-home speech therapy visits. And that really helped. He went from using baby sign language to developing a slowly growing vocabulary. Our sweet therapist was like a friend to me and at one point, I did muster up the courage ask her if she thought Bowie might have autism. She didn't really say yes or no, and maybe she couldn't. But she opened my eyes to things that we needed to see. Like Bowie's reclusiveness, which we thought was independence.

Once Bowie learned to say a few words, he was fantastic at being social and loved to say 'hi' and 'bye' to people. He would make eye contact ... for a brief second. He was very coordinated. But he flapped his hands. He loved to be held. But he spun in circles. He could sing the alphabet and count to 20. But he couldn't always hear us call his name. It was all very confusing even though I analyzed everything on a daily basis. A lot of the things he did or struggles he had looked like they could be caused by something else. And a lot of his strengths threw us off. Maybe spinning in circles and constantly jumping off the furniture was just him being a boy. Maybe his older sister talked a lot so he stayed quiet. Maybe he had speech apraxia. Maybe he had a cognitive delay that would work itself out by kindergarten. Maybe he was just super independent. Even some of our favorite therapists and our beloved pediatrician were uncertain. Maybe I was crazy for thinking it could be autism ... but I couldn't shake that feeling in my heart and in my head that it might be. All the pieces add up and make so much sense now in hindsight. Of course they do. But we didn't know. And that's okay.

And so we waited a bit. And things became more apparent during his first year of preschool. His wonderful teachers brought out the best in him and he's really done well in the classroom. We set up his IEP. We had conferences. We met with his amazing team of therapists and teachers at school. A whole team of professionals who are committed to our family and truly care about my child. And I could eventually see that they were kindly, softly, carefully nudging us toward getting an evaluation and a diagnosis.

There was a phrase I had heard them say when one of us would mention testing ... 'It wouldn't be a waste of time...'. And after I had heard three different teachers/therapists say that phrase, I finally understood. They were telling us to go. So we decided to get the ball rolling. We, like so many other families were referred by our pediatrician to a local child development center at our local children's hospital. And we were put on a very long waiting list for an autism evaluation last November. And had our appointment yesterday, April 4. And let me tell you, the waiting is the hardest part. It sucked. But it gave us a chance to accept the possibility of having a child with autism. It gave me time to get ready for it. To read about it. But no matter how prepared you think you are, the A-word can hit you like a ton of bricks.

But it can also open doors. We are embracing it. And now we can see (and feel) how fantastic it can be. I felt a literal wave of relief come over me yesterday after we left the doctor's office. I took a deep breath – inhaled, exhaled. And then took Bowie out for ice cream. Now that we have a diagnosis, we are eligible for the additional speech therapy that Bowie needs most. There are so many resources available and we are lucky to live in a city where we can access them easily. We have an outstanding doctor who will help us along the way. We have a plan now. We have answers to the questions we've had in our heads all of this time. We are excited and optimistic about Bowie's future. We have so much hope. He's healthy. He's okay. We're okay. We woke up this morning, the kids ate breakfast, and I took them to school. Just like always. Every little thing is gonna be alright.