What a wild few months it's been...
Preschool was good, until it wasn't. I expected a transition period, but after Dad's mid-winter break something changed. Every day was crying, refusing to go with teachers/aides, and biting. During the first week of March, Wombat bit another student who had a puzzle he wanted. As the recipient of many bites over the last few months, I know how much those bites hurt. My heart broke for that child and for my child. After that incident, we switched him from center-based preschool to itinerant status. That basically means everyone comes to him...sort of. Since we live so close to the school, I take him over there for PT, OT, and speech once a week and then his teacher comes for a half hour on another day. I'm annoyed at the whole situation honestly. For him to go from two and half hours of school a day, four days a week (10 hours a week of school) to thirty minutes per therapy a week is frustrating.
Around the same time we were seeing the behavior escalate at school, we decided to bite the bullet and get him an appointment at a well-known, highly respected autism center for a thorough evaluation. We had a quick, no eval diagnosis from when we were fighting our insurance for more speech therapy, but I didn't feel it was very helpful. A few weeks after we switched him out of center-based preschool we did two days of autism testing. It was amazing to be at a place that specialized in special needs children. Everyone we met knew how to interact with Wombat. They just got it. For the first time, in a long time, I didn't feel like an outsider. The best part? Everyone from kids to doctors to aides to teachers was smiling. SMILING! Coming from a preschool environment where I felt they didn't like my child, this was wonderful and very refreshing.
The first day was ok. It was mainly us sitting in a room talking to a pediatric neurologist and a pediatric behavioral psychologist. Wombat played, we talked. The worst part was the cheek swab for genetic testing. That was awful.
A week later and a week before the second day of testing, we got a report from the pediatric neurologist. It was your standard medical report. Lots of big words that I had to Google. I learned his head was almost too big (it's always been big) and then I read the "impressions" section. First sentence: "Likely ASD" and my heart dropped. As a mom and as a teacher, I'd suspected ASD for a while. I knew something was different about Wombat. He just wasn't like other kids we knew around his age. But to have it there, written in black and white... it was shocking, yet not shocking at all. If anything, it snapped me out of whatever denial I might have been in and got me working on potential solutions.
The second day of testing was a nightmare:the social emotional testing and the speech eval. The social-emotional was ok, but not great. He only tried to bite the tester once. Speech was a different story. We returned to the waiting room for a few minutes until the speech therapist was ready for us. This is where things went off the rails. Wombat expected to be done. We weren't done. So when it came time to go to the speech therapists office, he went boneless and Daddy had to carry him. Never good. When we entered her office, he immediately focused on a toy. He's very good at ignoring someone when he wants to and he wanted to ignore the speech therapist. She tried taking the toy, getting him to identify something, and then giving him back the toy. No, no, no, wrong, wrong, wrong, wrong. To Wombat, she was just antagonizing him, teasing him with the toy he wanted. Finally, I took the toy from him, gave it to my husband, and whispered, "Make it disappear." He did, thankfully, but the die was cast. Wombat hated this lady and spent the remainder of the assessment trying to bite her, begging me to leave, or clinging to me and sobbing. We all left very defeated and very upset.
April 8th, we got the "official" diagnosis. Moderate to severe autism. I expected the autism diagnosis, but the severity was another shock. I'm ashamed to admit I cried when the behavioral psychologist told us. I cried as all my dreams for my sweet little boy died right there in that room and were replaced by a pleura of new fears. Would he ever speak? How can we afford all the therapies he's going to need? Will people be mean to him? How can I keep him safe? Would he ever live on his own? He has a college fund, will he ever get to use it? Who will take care of him when my husband and I are gone? Does he understand how much we love him? So. Many. Fears.
I spent most of that weekend bursting into tears. Randomly, not so randomly. Then, something wonderful happened. As my husband shared the diagnosis with coworkers, we started getting emails, phone calls, Facebook messages...."I know this person, her son has autism, she might be a good resource for you." "Our son has autism, I'm here if you need to talk." "The local Autism support group is having a meeting, I'll watch Wombat so you and your husband can go."
We received (and are still receiving) a huge outpouring of support. Very rarely do we share the diagnosis with someone that they don't reply with, "Oh, my ____ has autism." Finally, we were surrounded by people who loved Wombat, loved us, and wanted to help. It was nice not to feel so alone.
Now, we're learning as we go. There's a very steep learning curve because I want to get Wombat as much help as possible as quickly as possible. I've stopped crying and being sad. He's still my son. He's still perfect, just the way he is. He's just a little different. Different, not less.
I'd read the following poem before, but now it resonates so much more.
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