Second Opinions

I’m beginning to realize how very fortunate we are to have such great medical care and resources. We were able to get J’s evaluation scheduled at Vanderbilt in just a matter of weeks by a Harvard-trained, Vanderbilt faculty member who specializes in autism. And we have the ability and opportunity to send J to a top of the line, comprehensive autism treatment center that’s located only 10 minutes from our house. AND on top of all that, we were given the chance to get a second opinion on J’s evaluation absolutely free of charge. We have a very proactive pediatrician who we’ve been with since CB was born, so we know her pretty well at this point. She told me a few weeks ago that she has a pediatrician friend here in town who has had extensive training in performing evaluations to identify children who are “at risk” for autism spectrum disorders. Our pediatrician wanted to be trained on how to do this evaluation, so she asked me if I would be willing to let her use J for her training. It would mean a free evaluation for J by her and this other pediatrician…essentially a second opinion on his skills and diagnosis status. How could I refuse an offer like that?

That evaluation happened this morning. I had been anxiously awaiting this day because I was curious to hear what this other doctor would think about J’s diagnosis status since he had begun therapy. We knew that 2 months ago he was definitely at risk for a spectrum disorder, but he’s been improving so quickly that I wasn’t sure where he would fall now. And since we have an appointment at The Gold Bar Center next week to discuss final details and sign the contract (if all the details work out), it was perfect timing to get some additional input on J’s therapy needs.

J did really well during his evaluation. He passed the skills test in all the areas I knew he was capable of passing. He showed his areas of vulnerability in all the areas I knew he was still vulnerable. I talked to the doctors about how quickly he has progressed and improved in so many areas, but that there are other areas that we are still concerned about (primarily social communication deficits). At the end of the evaluation, the doctor told me that J definitely does not yet meet the criteria for a spectrum disorder, but she thought he would be considered at risk. When she totaled up his scores, however, she said he actually falls just below the criteria for a diagnosis of “at-risk for an autism spectrum disorder.” So technically, at this point, he’s not even at risk! This is great news, because 2 months ago at his initial evaluation, he clearly met those criteria. She said that using her clinical judgment, she would recommend that we continue with aggressive intervention because he is obviously responding very well to it. She said several times that she’s extremely optimistic about his prognosis. She thinks that with continued aggressive intervention, it’s very possible that he will never end up with a diagnosis and may not have any long-term skill deficits. She said he is the perfect poster child for early intervention!

Obviously this was great news to hear. We were hoping this evaluation would give us more insight in to what our plan of action should be…before we make the huge commitment next week to The Gold Bar Center. I had a few minutes of second-guessing our decision (again). I mean, if he doesn’t even meet the criteria for “at-risk” for autism, does he really need the most aggressive (and expensive) intervention we can give him? Maybe just some home therapy will be enough. I expressed these concerns to the doctor, and she affirmed our earlier belief that you can’t really do TOO MUCH intervention at this point (unless it’s crazy, wacky, unscientific therapy….). So I came home and called Chris, and within 2 minutes of our conversation we were both back to the same decision. The Gold Bar Center it is. If J is improving so much this quickly, and if there’s a very good chance that he could avoid a diagnosis and have no long-term deficits or delays, then we want to do EVERYTHING we can do to make that happen, even if it’s more than he might actually need (although there’s no way to know for sure how much he actually needs just yet, so better to risk doing too much than too little). According to the doctor this morning and several other people I’ve talked to along this road, whether or not he meets the criteria for a diagnosis at this point is just semantics. He still has some skills that are not coming naturally to him, but he is learning them quickly with the appropriate training. So we’re going to continue training him by the best experts we can find. And we’re going to continue to hope and pray that he catches up in his skills and has no long-term delays or deficits. It was so nice to hear an expert in the field tell us this morning that our hope is not just naïve optimism, but that there is a very good possibility that this could happen!

So that’s our latest development, and by the end of next week the final details will hopefully be in place. If all goes according to plan, J will start at his new “school” in less than 2 weeks. Yikes!


Reading books...one of his favorite activities!



Here are a few of the new skills he’s picked up this past week:

- 2 word combinations….he has finally begun putting 2 words together very regularly. Bye Clara, Bye Dada, Hi Mama, All done fish (goldfish), More milk, Mama's shoes, More dog, Uh oh drink, Bye slide, No bath, etc. This is a big step, and I've watched his language skills just explode in the past week. He walks around the house just chattering away and narrating his day, so using language for labeling and social interaction, not just when he needs something. Hurray!
- ABC’s…apparently the child knows at least half of the ABC’s. Once we discovered that he did know a few of his letters (he just wasn’t saying them), we got out the ABC fridge magnet set and were surprised to discover how many of them he knew. I pulled out 4 new letters the other day, and within 2 minutes he knew all 4 of those as well. He can’t say them perfectly, but he knows them, and he’s capable of learning them very quickly. His memory is really pretty amazing – he just couldn’t tell us before how much he was remembering!
- Counting to 10….he started counting to 10 just a couple days ago. I guess it’s another one of those things that he knew in his head but couldn’t say until his language skills improved. Hearing him count to 10 is one of the cutest things I’ve ever heard. I need to get it on video soon because his little voice is so sweet!
- Shapes…he can say many of the shapes (circle, triangle, heart, star, etc). And he’s very good at sorting them and putting them where they go in the shape sorter or a puzzle. No luck with colors yet, but we’ll keep working on that.
- He actually told me the other day that he wanted his diaper changed. I had just changed it 15 minutes earlier, so I thought he was just babbling. But he walked to his changing table, signed and babbled diaper, and kept insisting, so I checked and sure enough…he had pottied. This may have been a fluke, but it was a start!
- He’s beginning to sing just a little bit. I asked him yesterday to help clean up his toys, so he started singing the clean up song (not quite getting the words right, but it was recognizable), and happily started picking up his toys. I wasn’t paying close attention and assumed he was putting them in the toy box. Then when I turned around, I noticed that he had dropped all his toys one by one in to the trash can. He was clapping and saying “Yay!” So proud of himself! I had fun digging every one of them out, also one by one :)

Skills we are still working on:

- Eye contact….it’s still inconsistent. He makes great eye contact when playing, but when he’s requesting that I do something, he throws things in my lap and won’t meet my eyes. He fixates on the object instead of engaging in social communication. He’s improving, but we’re still working on it.
- Following commands….still not doing it. He will pick up the letter H, put it in his fridge magnet player, and say H! But if I say, “J, where’s the H?” he either completely ignores me, or he says “No!” Not sure if that’s just being stubborn, or if it’s part of his communication disorder. Still working on it.
- Responding to his name…also inconsistent. Depends on what he’s doing and who’s calling him. Again, typical 2 year old stubborn behavior, or communication disorder?
- Social interaction…he does great and is very socially engaged with me, Chris, and CB. And he’s warmed up a lot to his speech therapist (probably because she has really cool toys!). But it’s still a struggle to get him to interact with other people. After a few minutes of warm-up time, he does much better. And he’s beginning to wave and say hi to random strangers, even children, so that’s a great sign. But he will still need lots of encouragement to help him learn how to interact appropriately with peers and adults and how to play with other kids. This is one of the many great benefits we think he will get at The Gold Bar Center – something we can’t really teach him at home.
- Repetitive/self-stimulatory behaviors…he still has a few of these. I’ve noticed that he tends to do this much more often when he’s distressed, upset, or stressed out. So he did this a few times this morning at the evaluation before he warmed up to the doctors. He also sometimes does it when he’s bored. But he’s usually fairly easy to redirect, so as long as I get down and start playing with him or trying to divert his attention, he will stop the behavior and begin playing appropriately. It just means I can’t let him play by himself for very long and that I need to be intentional about interacting with him, which is pretty exhausting for this very tired, pregnant mama!



Overall, we are thrilled with how quickly he’s progressing. It was so heartbreaking to watch his sweet little personality begin to disappear a few months ago. That was by far the saddest and hardest part of this journey…thinking that he was losing his personality and that we were in a way losing our little boy. But that personality is coming back so quickly. We are SO happy to be getting our sweet, fun, happy, snuggly, funny little boy back!