I tried to write this blog last week and that was all I could manage. See, BamBam’s two-year well-child check-up was last Thursday. He’s been doing much better between speech therapy and occupational therapy, so I was excited to tell his doctor about it.
I need to say here that we adore our pediatrician. Sparky even has a little man-crush on him. It’s kind of sweet, really. Dr. G is the most thorough doctor I’ve ever met, and I spent much of my working life in healthcare. He always comes in telling you about the latest research in something that’s relevant to your kid. He always makes me feel like I’m a good mom with great instincts about my kids’ health. He is always…just awesome. When BeBop was being evaluated for his speech delay and they were thinking it was PDD (pervasive developmental disorder, which is basically another term for autism spectrum disorder), Dr. G spent a long time on the phone trying to talk me off the ledge. He was almost as thrilled as we were with BeBop’s response to occupational therapy.
So, when he told me BamBam’s score on the autism questionnaire, he had my attention. It’s a red flag if you score over 1. BamBam scored a 6. I immediately started arguing the case for why this really didn’t apply in BamBam’s case, for how much better he really is doing with therapy. About the time I realized I was doing it, I also realized that Dr. G had come in the room already trying to console me. He was concerned that I would react the same way I had with BeBop, which was to fall apart a little bit. So I stopped and told him I was fine. That therapy has worked wonders with BeBop and I am confident BamBam will be the same in that respect. That a referral to the Autism Center would only mean more services for BamBam. That the referral could only help him and that’s what we all want.
Then I went home and fell apart. And got angry with myself for falling apart. Because I really do believe all those things I said to Dr. G. This referral can only help him. But the label still hit me hard. He’s been doing so much better. We love his OT. She helped us get set up with a speech therapist twice a month and we love her too. At that point (the doctor’s appointment), he had only had two speech sessions, but had made wonderful progress. Things were looking up. And then that label was thrown out there.
Part of the problem was that it was Thursday. He didn’t have any appointments with his speech therapist or occupational therapist until the following Wednesday. I really wanted to talk to them about it because they see him in action. The questionnaire only looks at certain very specific things, like whether or not he points with his index finger. Well, no, he doesn’t, but he’s starting to communicate in other ways that the questionnaire can’t see and the therapists can.
To make matters worse, we did have a therapy appointment coming the next day, but it was for education. BamBam’s enrolled in a local program that services kids birth to three with developmental delays through a grant. His therapists are assigned and coordinated through that program. When he had his initial assessment, it was recommended that we hold off on speech therapy until OT had a chance to get him calm him enough to retain attention a little better. Or at all, actually. They said we could add speech later if needed, so we started with just OT every week and education therapy every other week. I don’t like his education therapist, haven’t from her first visit, and I realize now why that is. She is very negative and focuses on what he can’t do, on his limitations. She told me on her first visit that I should take him out of his music class because that environment wouldn’t work for him. I’m so gratified that he’s doing much better in that class now. That was also the visit where, after 15 minutes of knowing him, she commented on how dangerous it was for him to play on the stairs or climb up on a kitchen chair. Things he had been doing without harming himself for six months before she laid eyes on him. She also didn’t want to start him in speech therapy – she wanted to increase his sessions with her instead. Yeah, like that was going to happen. As I said, the OT and I worked together to get him into speech. I’m told the ET is a new therapist to the center, doesn’t have a mentor, and has not worked with younger kids before. It doesn’t hurt BamBam to have therapy with her, it’s just frustrating for me because I don’t like her, so I’ve been trying to give her a chance to show me how she can help him. I’m thinking it won’t go on much longer. Needless to say, BamBam’s referral to the Autism Center was not something I was willing to discuss with her.
Less frightening than the label, but still a concern, was the thought of adding trips to Seattle to our already overflowing schedule. Not at all excited about that prospect. I called the Autism Center when I got home from the doctor’s office. They called back the next day to tell me it would be about six months before they could get him in for an evaluation. Six months? Yep. Seems their waiting list has about 1100 people on it. I’m still not sure whether that made me feel better or worse.
So, I did what I do in this type of situation – I ate anything and everything I could get my hands on. I tried to write about it, but you can see above how that turned out. I did talk to some friends and that helped. They asked, for instance, why he needed a referral to the Autism Center when he’s already getting services. The Autism Center can give him ABA (applied behavioral analysis) therapy, which can help kids with autism if you get them into it early enough.
I’ve managed to get a little perspective and am doing much better now. I talked to both his therapists on Wednesday and that was a huge help. The speech therapist told me about some other programs with shorter waitlists, so I’m looking into those. She also told me that label of autism is the only one she’s sometimes glad to see. Seems that without the label, school districts often don’t provide the services kids need, whereas the label opens those doors. The OT reminded me that we know BamBam best. She also explained a little about ABA therapy and cautioned me not to over schedule him with therapies. To let him play with other kids and just be a kid.
The speech therapist also made a fabulous observation this week. BamBam dropped something and was running across the room. When he dropped it, I said, “Uh-oh.” He didn’t reply until he made it across the room. Then he started trying to imitate the “uh-oh,” but could only get the “uh” part. He was having trouble forming his mouth around the “oh.” We started talking about motor planning problems, which BeBop has issues with, so I think it’s likely that BamBam does as well. The speech therapist thinks he’s having trouble figuring out how to make his mouth form the words. He’ll watch us for those clues, so we’re supposed to slow down and exaggerate our facial expressions/mouth movements. I think she’s really on to something.
I need to keep reminding myself that, no matter what labels are thrown around trying to pin him down, he’s still the same kid he was yesterday. And this kid? Packed to the brim with potential. We just have to figure out how to help him access it. If the way to do that is by getting him a label, then that’s what we’ll do.