Mr. Sandwich wrote this on Monday, and we both wanted to share it here.
Last week we got the news we had been both expecting and dreading. Baguette was formally diagnosed with Autism Spectrum Disorder. This was not a complete surprise, we had been looking at symptoms and ‘benchmarks’ to one degree or another for at least a year. There was speech therapy, there were visits with the principal at daycare about her behavior and class integration issues, of potty training, and the need for her to have further help. To the friends I’ve talked about it with, I have likened it to a punch that you can see coming. You can brace for it, but you’re still going to feel it.
So now we have a doctor’s diagnosis. We have a downloaded packet of steps to follow and paths to pursue. As I read my packet I see that I can expect to go through the stages of grief, which I don’t know if I am, or I don’t know if I started months ago when it became so clear that Baguette was different from her peers. I’ve talked with friends whose children are affected too. I’ve felt at alternating times that I am dizzy and steady, even keeled and bowled over. Today Baguette bowled me over, and I haven’t quite gotten up yet.
I picked her up from daycare late and was rushing to the pool. We’ve noticed how she seems to respond positively to the water, both with speech and behavior and for the past several weeks I’ve been trying to get her into the pool every day. When I buckled her into the carseat she asked for her Sesame Street CD like she always does, but that was in the other car, so all I could do was turn on the radio for the 3-minute drive to the park pool. Of Monsters and Men’s “Little Talks” was playing on the radio and we heard most of that by the time we hit the parking lot. I was running late, and we would only have 12 minutes worth of swimming so I was hustling as fast as I could. As I scooped up Baguette, she was reciting to me. She frequently recites, she doesn’t speak directly, she reiterates whole passages, whole verses of books and songs she knows and keeps as her friends and repeats them to me and Mommy and the World. While I was initially distracted as I fast-marched through the parking lot, she reached out and grabbed my face to turn me towards her and I heard clearly what she was reciting.
“Listen word I say. Hey. Scream sound same. Hey. Truth vary. Ship carry. Safe shore.”
She was repeating to me the lyrics she had heard on the radio just moments before. She’s heard that song played before, but not recently, and even if she did I’m not sure I’d expect any three-year-old to mimic lyrics like that. For a brief moment I was struck dumbfounded in the parking lot, trapped between wanting to laugh and congratulate her on her razor-sharp retention and cry over the fact that she couldn’t tell me things other little girls can. The fact that the lyrics are about a woman whose mind is at war with her and the man who still loves her despite this is just the brass wrapped around these particular knuckles. I didn’t have time to process the moment completely. She had started singing “The Farmer in the Dell” and time was ticking away. We only had a few minutes to get in the pool and that was the reason why we were there, for her benefit, not mine.
Hours have passed now and I can’t shake that refrain she recited to me. I can’t help but think that she was trying to tell me how the wheels in her mind were turning, how she needed me to communicate to her, how she hears the world. “Don’t listen to a word I say. (Hey) The screams all sound the same. (Hey) Though the Truth may vary, this ship will carry our bodies safe to shore.” That song will never be the same for me. Nothing will ever be the same.
Wow, Mr. Sandwich… thank you for sharing, and you write so well! I like your analogy of waiting for that punch to come. It’s sort of like a bittersweet moment to finally diagnose something you probably already suspected. I can’t imagine the emotions rolling through you, as I imagine the mysterious and self-learning journey you guys are about to go on.
Mr. Sandwich, you made me tear up at my breakfast table. This is beautiful- the swimming, the song, everything.
Speaking as a parent who has a kid who never got a diagnosis, although for a physical problem that does not have the global impact that ASD does (she periodically runs high fevers for no reason we can discern- once we ruled out the scary things like cancer, it is an inconvenience but not a problem), I think having a diagnosis would be helpful, if only because it gives you a way to organize your thinking about the issue, and something to guide your research and planning. Otherwise, you have to figure everything out by yourself. And at least for me, there is a little worry in the back of my mind that the rest of the picture will become clear and it will be worse than we think it is right now.
But as you and Tragic Sandwich have both said, the diagnosis doesn’t change the symptoms, so it doesn’t really change your reality. It sounds like Baguette has two parents who will do right by her, diagnosis or no diagnosis.
Mr. Sandwich and Tragic Sandwich,
I’m so sorry to hear this. One of my kids (youngest) was recently evaluated with Autism also. He is getting speech, occupational and physical therapies. I have heard that swimming helps a lot, as well as early interventions. I’m still learning and grieving about the diagnosis but like you, I did see it coming. I do read your blog regularly and now i have another reason to read your blog. Best of luck!
This just blew me away….it’s so brave of both of you sharing about Baguette and that you are both taking this diagnosis on with great strength and what you can do for her! Good vibes coming your way!
Thank you, all of you, for your kind words and well wishes. This was hard to write as it so often is when your feelings span so widely. This is uncharted territory for all our family and I want to continue to write about our journey, I just hope I can find the proper words.