Grateful Grateful Truly blessed and duly grateful

Developmentaly evaluated

(I probably should have divided this post into chapters. Yeesh.)

Yesterday, we had the long awaited the appointment with the developmental pediatrician. This appointment was scheduled right after we got the 5p- diagnosis five months ago, and we've been looking forward to it. The objective was to evaluate if Eddie needs any additional therapies at this point, and to begin regular monitoring so that we have a plan as he gets older.

The experience of this appointment was different than every other appointment we've had. (And we've had a lot.) Most of the work this doctor does is out of his private practice, which is not in network for any insurance plans.  That meant we had the option of doing to his private practice and paying $990 before waiting for out of network insurance reimbursement, or waiting longer and seeing him in his clinic, where they are in network and, because we've met our maximum out of pocket for the year, we had no cost at all. We, of course, had to go with the clinic option.

In Atlanta, we have Children's Healthcare of Atlanta (CHOA), which is one of the best children's hospitals in the country. CHOA is made up of three different hospitals who, fairly recently, were separate institutions.  Usually, Eddie's stuff is out of Scottish Rite, which is the closest to home, at about 20 miles away in Dunwoody. However, the doctor that we saw yesterday has his clinic out of Hughes Spalding, which is about 30 miles away from home, in Downtown Atlanta. The facility is much older than Scottish Rite, and those additional 10 miles made a huge difference in terms of our commute, and so by the time we got there, we were already a bit stretched out.

Each time we've seen a doctor, whether they've been located in a freestanding building, on a hospital campus, or within the main building of a hospital, it's been in something that felt like a traditional doctor's office, with a awaiting room and front desk. This time, the clinic was located in what used to be standard hospital rooms. The only "front desk" was the nurse's station, and the waiting room was a hospital room with a bunch of chairs instead of a bed. This wouldn't have mattered in the least, if it hadn't been for the up to five kids with two or more parents each that were crammed into the room at any given time.

We arrived for our 10:30 appointment right on time, and were still sitting in the waiting room at 12:30. Based on what another parent said, it was normal for the total time spent in the clinic to be seven hours or more. Thank God I took a vacation day for this appointment.

While in the waiting room, the doctor would occasionally look in and say hi.  Eventually we were taken back to a private room - another former hospital room, with an examining table and kid's play table instead of a bed. It wasn't long before the nurse practitioner came in. She asked a bunch of questions, poked Eddie, and was great to talk to. Very shortly after that, a speech pathologist and occupational therapist came in. They were also great. During all of this, the doctor would poke his head in and out, saying hi.

After we had spoken to everyone, the doctor came in and spent about 15 minutes with us, letting us know what he thought and what our next steps were. What amazed me was that he pointed out things that he had noticed during his 30 second stops in our room. Apparently there's a reason why he kept coming in and out, and apparently there's a reason why he's considered so good at what he does.

So, after all that, what did we find out? (620 words into this post, and I still haven't gotten to that, huh?)

The nurse practitioner said she was sorry we had been scheduled for this week (apparently, each week is a different clinic, and this week was autism), because they didn't have a physical therapist there this week. She said that Eddie was very bright, and that if he is on the autism spectrum, he is very, very mildly affected. She said kids in his position who get a diagnosis at this age will often "weasel out" of it over time if they receive the right therapies. This was similar to what the last geneticist we saw, too.

The speech therapist was very pleased with how many words he has, and gave us a list of sounds to work on him with. She did not feel that Speech Therapy was necessary at this time.

When the speech therapist and the occupational therapist were in the room, Eddie did his "preaching," which I was so thankful for. For those of you who haven't seen it, Eddie walks around (he used to just sit), repeating the same "sentence" or two of gibberish (no recognizable words to be heard) while stretching out his arms and doing weird things with his hands. This can last 10 minutes or more. It's very difficult to describe, but is definitely weird. (It's honestly the only strange behavior I had ever really noticed.) Turns out, this is his "stim," or self-stimulatory behavior. This is very common in kids on the autism spectrum. After seeing this and learning a bit more about it, the occupational therapist was trying to decide if Eddie should have an OT evaluation now, or if we should wait until after his next appointment. After we had talked a little longer and I had told her more about his tactile (sticky foods, sand, grass, etc.) and sound aversions, she decided that he should go now.

When the doctor came in, he went over everything we had discussed with the other therapists. He then asked if Eddie was prone to repetitive behavior, and I told him no, I didn't think so. He then named a few repetitive things he had seen him do during his quick visits into the room over the past couple hours, and asked if that was normal behavior for him. It is. I had never really processed that a lot of what Eddie does is repetitive, and that that is abnormal.

The doctor said that, at this time, he would diagnose Eddie with PDD-NOS, which is an autism spectrum disorder. It essentially means he has some of the symptoms of classic autism, but not enough to be considered autism or Asperger syndrome. He recommended the OT, but also wants Eddie to have a speech therapy evaluation to, just to be sure that they didn't miss something. This may or may not be related to/caused by the 5p- syndrome.

All of that, and we were only there for five hours! :)

Eddie will go back to this doctor in six months. His OT evaluation is scheduled for October 28, and the ST evaluation is November 18. Those will be like his PT evaluation back in the day, where they'll determine if he needs continued therapy after doing a two hour evaluation. My guess is that he will end up in OT but not ST, but we'll see.

The other interesting thing that came out of this appointment was a discussion with the nurse practitioner about schools. I explained that where he currently is, he is still in the room with 9 - 15 month olds, and that I was afraid he wasn't getting as much out of it as he could be if he was in a room with his peers. (The next room up is for 15 - 20 months, so he's already older then all of them, too.) I mentioned that I was thinking of looking at Montessori schools for him. She said that usually at this age, Babies Can't Wait provides all of the services for kids under three. I gave her the quick story of what our experience has been with them (we've been trying to get the first meeting schedule for more than a month now, and still nothing), and she said that that's why she said "usually." Apparently, the program used to be great, but that due to recent budget cuts, it no longer is. She said that at age 3, Eddie will qualify for special education preschools, and he will receive all of his therapies there. But in the meantime, she would highly recommend another school where he could be with kids his own age, and that a Montessori school may be very good for him. Now I just need to find a time to go talk to schools and see what our best plan is.

I know that the more we do for Eddie, the better off he will be. But I'm still at the point where it feels like every new appointment is a trip down the rabbit hole, where we're learning more, but keep risking being sucked in. I hope we get to a point - soon - where we have a normal, a routine, where we know what's going on and what we're doing next.