I am sitting here, report in hand, reviewing the results of Lewis’ evaluation from Early Intervention. I’m having that strange sense of Deja Vu – and it doesn’t feel good.
We’ve had concerns about his speech (or lack there-of) for a few months now, concerns that I expressed at both his 15 month and his 18th month well checks with our pediatrician. At his 15 month check, I told our doctor (who I love) that I was worried that his language wasn’t progressing. He had some sounds, a few partial words, and “Dada” (which, for the record, I do not take personally, although it would it have been so hard for one of my kids’ first real word be MAMMA???) I told her that it was really hard for me to know what was “normal” anymore, since Gerry talked so early and never stopped, and even Howie had some words and sounds at this point. I wasn’t worried about his hearing since he followed directions just fine, responded to his name and clearly understood a lot more than we thought he did. And I wasn’t worried about any of his gross or fine motor skills. At that appointment, she told me to just wait, let’s see how it progresses and we’ll check again at 18 months. Those three months passed by painfully quiet, and at the 18 month appointment she handed me Early Intervention’s number. To misquote Ronald Reagan, I thought “Here we go again.”
The Early Intervention team came out on the day that Lewis turned 19 months, and did the Michigan Early Intervention Developmental Profile with him, a test that takes about an hour to complete. The profile covers everything – fine motor, gross motor, social/emotional interactions, both receptive and expressive language, and a section on self-care. Again, I had this weird sense of having been here before. Exactly two years earlier we were running these same tests with Howie, but with much different answers. Almost every question they asked me, I answered almost the opposite of what I had answered two years prior. Is he able to play away from you for more than 5 minutes? Yes. (but not Howie) Does he vary his play with different toys? Yes. (but now Howie – not even now.) Can he find an object when hidden from view? Yes. (again, not Howie). Can he eat with a spoon independently, build a 6 block tower, draw a circle, and follow new instructions exactly? Yes to all (and no to all with Howie, and some he just started doing this year).
We finally got to the speech/language part of the Michigan, and I told her that I knew he had some emerging sounds and some beginnings of words, but there wasn’t anything past that. By this time I was having a hard time concentrating. Each question and each task they asked him to perform up to this point was like a slap in the head to me. How did I miss all these things two years ago? Had I been paying better attention, would there have been signs that I needed to push for more services earlier on? And how come no one in Early Intervention said anything to me that would have pushed me to get Howie diagnosed earlier? Here I was again, watching this all unfold in my toy room with Lewis, knowing that siblings of children with ASD are more likely to also be on the spectrum, and I wondered if I had the strength to do it all again.
I pulled out every ounce of emotional energy I had to listen to the final part of the testing and hear their preliminary results. Part of me was embarrassed that they were even here, considering how well he was performing on most of the tasks. But the other part of me knew that the speech/language evaluator wasn’t hearing what she wanted to hear from him. She first gave me all his “scores” from the other parts of the tests – social/emotional level was at a 21 month developmental level, cognition was at 19 months, fine motor – 21 months, gross motor – 19 months, self care level was 16 months (but she told me that the Michigan seems to expect that kids are toilet trained by age 2, so we shouldn’t pay too close attention to this number), and receptive language was at a 23 month developmental level.
Then the expressive language. She told me that she was impressed with my grasp on speech/language lingo with my “emerging sounds” classification, and it was clear I knew what was going on. She didn’t hear any polysyllabic sounds from him. He only had a few vowel sounds in his babbling. However, his ability to name one object on request, his use of gestures to communicate, and the fact that he used two words meaningfully scored him at the 15 month level developmentally. In order to be eligible for early intervention services, he needed to have “scored” at the 14 month level. According to the guidelines, he was functioning at a developmentally appropriate level.
My heart sank. For most people, this should have been good news. He wasn’t so far behind that there was a “problem” that needed immediate help. He didn’t qualify for services, isn’t that a good thing? But I had been here before, two years earlier. Howie scored “developmentally appropriate” in all areas too, all on the lower end of the guidelines, but he always had one or two strengths in each category that pushed his score into the “normal” range. The only way we received early intervention services with him was that they picked him up under clinical judgment for his sensory issues, meaning that we know that something is going on but we can’t quite put our finger on it, so we’ll see if OT every other week for six months helps. And I was right there again with Lewis now.
I asked the evaluator about picking Lewis up under clinical judgment. Very honestly, she told me that she could, but because it’s only for a six month time period she thought it better to wait three months to see how or if Lewis’ speech improved. She gave me some very concrete suggestions of what to do to encourage his language skills, and told me to call her just before he turned two to come back to redo just the speech portion of the profile. I think she could sense my frustration, because she promised that she would be the one to come back and gave me her cell phone number to call even before the three months if I thought things were regressing or not progressing at all.
So, again, we play the wait and see game. We’re trying to implement her suggestions and we’re seeing a few improvements. Most of all I have to try not to panic. On the outside, I tell my husband and others that it is what it is, if he doesn’t talk, we’ll just do whatever we have to do to help him. But inside I’m a mess. Wondering if I have the strengths to do this all again. Begging him to just say “car”. Hoping that this isn’t another case of history repeating itself.
“just little bits of history repeating
and I’ve seen it before
and I’ll see it again
yes I’ve seen it before
just little bits of history repeating” – The Propellerheads