I was finally able to get Simon in for an assessment with San Diego County Regional Center Early Start program on June 9, 2014. I took him for the assessment while Eleanor was in school and I had George with me, which is always interesting. I was fortunate to be able to schedule the assessment for the morning, as Simon is generally in a better mood and more receptive to things. If you try and get him to do anything constructive between nap and dinner time, you’ll be shit out of luck.
I thought he did pretty well, all things considered. There were two therapists doing the assessment: a Speech Language Pathologist and a Public Health Nurse. They asked me a bunch of questions and played with Simon and George. Then we left, picked Eleanor up at school, and went and got Happy Meals for everyone. Because, you know, reasons.
I won’t bore everyone with the minutiae of the results from that assessment. But it boiled down to this:
Simon was 20 months old at the time of the screening.
Cognitive Skills: Age level 15.5 – 18 months
Gross Motor: Age level 21-24 months
Fine Motor: Age level 13 – 15.5 months
Total Communications Skills: Age level 7 – 8.5 months
Self-Help/Adaptive Skills: Age level 13 – 18/15.5 – 18 months
Social/Emotional Skills: Age level 10 – 11.5/13 – 18 months
So…. Yeah. He’s got some challenges.
They also gave him the M-CHAT (Modified Checklist for Autism in Toddlers). And right across the top, is the word… Fail.
After the assessment, it was all ‘hurry up and wait’. We were told it could be up to a month before the results were available and before we could start services, although they told me at the time of the assessment that he would definitely qualify.
While we were waiting, I was struggling more and more. The September 2012 Due Date group I mentioned previously was becoming more and more upsetting for me, but I still kept going back looking for someone else that was going through the same thing. However, out of dozens of children, I was the only one with a totally nonverbal child. As I recall, there was one little boy whose parents were concerned he might have a serious hearing problem and even he was talking more than Simon! (He has since been diagnosed ASD as well, I believe.) I would post queries about “anyone else still have a non talker?” and would get answers back like: He’s fine. You’re overreacting. My kid only has 10 words right now, so I feel your pain (um, no, you don’t). Or, even worse, I would post looking for support and would get zero responses back. Crickets, I tell ya.
Then, one day, came the breaking point. I posted again, voicing my concerns about Simon and I got, maybe, 2 or 3 responses, all of the “stop worrying, he’s fine, you’re overreacting” variety. Remember, the kids were all around 20 months at this point. Then, almost immediately after one of my posts was met with the reply that I was overreacting, one of the moms posted “My kid says ‘Me-Mom’ instead of ‘Mommy’ and I’m really worried. Do you think he needs speech therapy?”
Now, the first time I read her post, I thought “Awww, how cute, her kid has a pet name for his mommy.” Eleanor used to call me ‘Mahi’ before she learned to say ‘mommy’ and I remember being so sad when she stopped that. Then I read it again and thought “Wait….what??”. And then I read it again.
Are. You. Fucking. Kidding. Me? I wouldn’t care if Simon called me ‘Hey, you bitch’ as long as he called me something, you know? What I would have given in that moment to have a meaningful word come out of his mouth? I put my head down on my kitchen table and sobbed. And sobbed. And then I left the group and I haven’t been back since. I’m still in touch with a few of the moms, and I treasure them as friends, but on the whole, I don’t miss it much, I don’t think I was missed, and I’m still so very sad about that whole experience. I just wanted to know that I wasn’t alone in what I was going through and that’s how I felt, so very very alone.
<<EDITED TO ADD: I wish I had been strong enough to stay in the September DD group. I don’t begrudge them bragging about their kids. Far from it. Hell, I brag about my kids all the damn time. I wish I could have handled reading every day about all the things these other kids were doing that Simon wasn’t and might never do, but I couldn’t. And that’s on me. I couldn’t handle it. My feelings about what happened there are MY feelings, right or wrong, and I own that. I wasn’t strong enough, end of story.>>
While we were waiting for Simon’s services to kick in, he was slipping away little by little. His meltdowns were increasing. His eye contact was decreasing. I remember one day sitting in the kitchen with him on the table in front of me, begging him to look at me, and he just wouldn’t. I tried for 15-20 minutes and he simply would not look at me. I wrote of my concerns to some good friends, and while I tried to down play it as he was just ‘tired’, I think I knew. I knew.
On the bright side, though, his problem solving skills were amazing. We actually had to get rid of the chairs to our dining table and replace them with folding chairs that could be put away after meals because, well, otherwise he would drag them to pantry and climb out to get to his favorite snacks.
We were also busy making plans for moving out of California. We weighed our options and our existing savings and decided that we needed to make the leap sooner rather than later. Adam was still searching for a job, but wasn’t having any luck, so we decided we were just going to go. After much discussion, we finally decided that Seattle, WA, would be the best place for us and started working on downsizing our belongings and researching places to live.
Then, in early July, we got word that Simon was going to get to begin Speech Therapy and Infant Education.