The first time that our caseworker from the Commonwealth of Virginia’s early intervention program met with me, she told me not to look up the symptoms of Autism on the internet. That was about a year ago. A year ago, when I noticed that Owen ignored me when I called his name, when I noticed that he didn’t look at me, play with others, or say even one word, despite the fact that I had been talking to him nearly constantly since his first breath, narrating every moment we spent together. A year ago, when in-home assessments made me I realize that I had been doing everything wrong. “Can he stack blocks? I don’t know, am I supposed to have blocks?” “Can he grasp a crayon? Are 15-month-olds supposed to have crayons? Won’t he just put them in his mouth like everything else?”
So, I followed her advice and didn’t look. In that year, we’ve moved to Georgia and enrolled in their program, Babies Can’t Wait. We were paired with a truly fantastic speech and language pathologist. She reiterated the dangers of diagnosing one’s child via the internet. I agreed and cracked jokes. I’ve nodded a lot and taken notes, and bought plastic farm animals and Melissa and Doug wooden toys and banished Baby Einstein and batteries. I’ve learned sign language and how to talk in two-and-three word sentences. I’ve gotten frustrated and grouchy and jealous of moms who have talking toddlers. I’ve moved my child to a daycare where he would get more attention and been pleased by the progress. I’ve chatted, in amazement, with children my son’s age as they proudly tell me things like, “I have shoes” “I’m a big sister!” and even just, “Hey! Owen’s Mommy!” and I can’t believe how clever they are.
But today, I looked up Autism Spectrum Disorders.
Have you ever had that feeling like your insides were a piece of paper that just got crumpled up into a ball inside of your chest? It was like suddenly all of the brave, optimistic, progressive, mama-bear things I have said in the last year I mean, I’ll do whatever it takes to get him up to speed; the special education programs offered here are excellent and I’m sure he’ll be talking in no time.
I’m sure he’ll be talking in no time.
I mean, he’ll get caught up.
I totally accept this…
All of those words just sort of disintegrated today, even as they fell out of my mouth, when the SLP used the term “Autism Spectrum Disorder” today. We have to schedule a test with a developmental psychologist to get an official diagnosis, and we want to do that this summer so that all of his paperwork is ready for his 3rd birthday, when he transitions out of his current program. I did more nodding. I nodded at “Pervasive Development Disorder” and “Bill Gates has Asperger’s” and jotted down the notes of who to call and what to say and made note that the Marcus Center in Atlanta has a 6-9 month wait for testing, so I should probably stay local. I nodded and jotted and laughed nervously and thanked her and flapped Owen’s hand to wave bye-bye and then we checked the mail and rolled in the trash can.
I called my best friend and told her about how nervous I was about my new job and how I was still excited about it and she reassured me about it and then I told her about Bill Gates. She pointed out that when I’m upset about something I never bring it right up. I always complain about something else first. Then our husbands were there, so we got off the phone and I made dinner and watched Jeopardy! and sat on the couch.
Then finally, after all this time, I Googled Autism Spectrum Disorders. As I read I got the crumply-paper feeling, worse this time, because it was like the National Institute of Mental Health came to my house and summarized the last 12 months of life with Owen. Worse because, as I selfishly thought, I don’t get to have a normal kid. Worse because I feel guilty for feeling self-pity when I know I should be thankful that I have a beautiful, healthy, happy child instead of getting caught up in these ominous acronyms.
ASD, PDD-NOS
I can’t help but think of rainbows when I hear the word spectrum and I don’t even know how I feel about that. ROY G BIV. Rainbows are a promise that good times will follow the hard times, but right now, I do not feel uplifted. Right now I am going to refrain from saying brave, fluffy things, A diagnosis will basically be our license to ask for more assistance from the school system, he can get speech therapy three times a week and then he’ll get caught up by kindergarten. I’m sure he’ll be talking in no time.
So no, I don’t have a witty title, or a dry, self-deprecating remark to turn my sad feelings into a joke. Right now I’m disappointed and worried. I know that the feelings will pass, and I’ll deal with them and find some more brave things to say, and hey, maybe the diagnosis won’t be so bad.
Besides, I’m sure he’ll start talking soon.
Oh, sweetie. *hugs*
I want to say something to make this better, but I know that if I were you, nothing would make it better.
But I will say this. I have known you since we were too small to understand what life was truly all about. Since before we had to grow up and face the harsh realities that come at us like headlights on a foggy road. And even though life has taken us down different paths and shaped us into different people, one thing remains in my mind. I know that you are, and have always been, strong and you have never, ever, let anything defeat you. And this won’t defeat you either.
You and your husband love Owen, and that is what matters most. If he’s Autistic, I know that you’ll never fail him, as a mother and as a person. You’ll always be his champion. Yes, it is sad. But he’s lucky to have two wonderful people who will fight for him to have the best, and enable him to be the best. The resources today are amazing and limitless. And it isn’t a death sentence, not by a long shot.
So, that is what I will say. You’ll be okay…. you and your family.
My heart wants to break for what you guys must be going through – the not having answers and the waiting and the hoping. I can’t imagine how hard it is on a day-to-day basis, not only to stay positive for your own sake, but for Owen’s too. One thing I do know is that you are a genuine, loving, passionate, joyful, intelligent person and that you have a Joie de vivre that is all yours that you bring into a room with you. Owen is so lucky to have you as a mom…. like, ridiculously lucky. Any kid would be lucky to have someone like you helping them through life and sharing that smile and aura you have as they learn what life is about and how to get through it as best as they can. While it must be difficult beyond words, just know that you have a network of people rooting for you. And that all the good karma that smile of yours has brought to other people in your life is coming back at you ten-fold. Hang in there… give that little one lots of love. I’m sure there are going to be times of complete and utter frustration… just as there will be times of joy looking down at that kid and knowing he’s loved and cared for and seeing the joy that he brings in a little kid smile (a miniature of your own, I’m sure). Sending lots of good vibes your way, and praying for you and your family.