OHSU Down Syndrome Clinic

Jordan’s been home 2 1/2 years and is 5 years old later this month. We have often been counseled to go visit the Down Syndrome Clinic at OHSU (Oregon Health and Science University). However, the appointment is a team evaluation approach that takes some four hours in a clinic setting with lots of sitting and waiting and no actual therapy or medical services happen. So, we put it off. However, last month we finally went up there to see what gaps they could find in Jordan’s care and I’m glad we did. No, I doubt it will be worth going annually as they suggest, but I think every few years they will be a fantastic resource for us in getting a more comprehensive overview of Jordan’s care needs.

The first thing they do is a hearing evaluation. Jordan thinks sound booths noises are very boring, so it was pretty inconclusive. However, he was responding at some 20 decibels, which is more responsive than he was a year and a half ago when we were getting his first set of tubes. Anyway, I’m not currently concerned about his hearing, since he had a good ABR test and has new long-term tubes in now.

Next, we saw Dr. Pinter, who is a pediatric neurologist. You know, I’m not exactly sure what that means, but I know he specializes in treating/advising people with Down Syndrome. We liked Dr. Pinter and were impressed that he gave us his email address. I love doctors that you can contact without trying to get through a gauntlet of receptionists.

Dr. Pinter asked pretty early in our consultation if we had considered whether Jordan has autism. Can I just tell you what a weight rolled off me when he asked that? I don’t think we even realized we were carrying a burden by not having an official diagnosis of autism, but Dr. Pinter was able to arrange for Jordan to have an ADOS (observation test) performed by the physical therapist and occupational therapist instead of their regular evaluation… because the autism clinic and the DS clinic share space and the right people were there that day. Anyway, it was interesting to watch them administer the ADOS and I was impressed with both the PT and OT. (Basically, they play with Jordan for awhile, but they did it so well! Hard to explain!)

It had been 3 hours at this point and Jordan had been AMAZING. No crying! He is scared of doctor visits, so this was a gracious answer to prayer. We saw the PT last and I was so glad to overhear their observations about Jordan as they observed him and helped him play in the therapy room. We have never gotten as complete a description of how Jordan’s body is working and I really appreciated that. They also suggested we get a different kind of orthotic for his feet next time (Sure Step) as they would help him use his toes a little more. They also suggested spending some time without the orthotics. I am looking forward to getting their official report in the mail so I can review it and make suggestions to his team at school.

Jordan also had some standard labs drawn while we were there and the lab techs were fantastic. It was the fastest, most painless blood draw you can imagine doing for a scared little boy… he didn’t like it, but it was not at all traumatic.

At the end, Dr. Pinter came in and reviewed the ADOS with us, saying that Jordan does fit the mold for having autism. Again, we were surprised with the level of emotional response we had to this. We have known since early on that Jordan experiences more than Down Syndrome. We’ve called it institutional autism for a long time. Hey, maybe it is institutional autism, but just calling it autism and accepting it as a more permanent and real part of Jordan’s experience and hearing a professional confirm for us that he is not experiencing life as a typical kid with autism has really made a difference for us.

– I feel a little sad to acknowledge that the struggles Jordan has related to autism are a real part of his life that is going to stick around for awhile – perhaps his whole life. Some autism stuff is just really hard.
– I feel relieved that I didn’t cause the autism. I know, I knew that… but sometimes you wonder if you weren’t doing something he needed in order to develop. I didn’t cause this autism.
– I have looked up a little about autism and learning from mainstream autism literature has given me great insight into how Jordan experiences the world! I have so much more understanding and a great deal more empathy. I know it’s a spectrum and that all people with autism experience it differently, but it was still really helpful. Family members and close friends… will you please check out this easy-read book from the library and read a little bit of it? “The Reason I Jump” by Naoki Higashida It has helped me to relate with Jordan and to understand him a bit more.

So after all that, we headed home! I wish I had brought some food for Jordan since it was suppertime and we were stuck in rush hour traffic for quite awhile, but it all worked out and Jordan didn’t melt down. We also walked away with a referral to a sleep clinic and to a feeding clinic. All in all, I felt like I got a better “big picture” idea of Jordan’s needs and the diagnoses and referrals and labs I needed to make sure we’re doing a good job. I don’t plan on going back in 12 months, but I will remember them when I get to a point of needing a care review again.