Yesterday Scott and I went to Thomas Jefferson University, Department of Occupational Therapy in Philadelphia to participate in a research project. Matt had found out about this on the SPD Parent Share PA message board. After an overview conversation awhile ago with the lovely Teal, who explained everything, I made an appointment for Scott to be included in the study. We've never done anything like this before, but I am so happy to be able to further awareness and help researchers gather information on SPD. I was a little weirded out by the idea that he would be a guinea pig, but the researchers assured me that he would not be in any stress and that we could stop the study at any time.
Without going into a ton of detail, which you can find here, the basic premise of the study is to see what sensory input would affect the child and how well they would be able to adapt. The child's heart rate and sweat production are tracked as the child goes from resting, to being presented with loud noises, flashing lights, smells and the movement of the chair. They are looking for children at least 5 years old who have been diagnosed with ASD, SPD, or just "normal" or NT (Neurologically Typical). The goal of the study is to be able to show evidence for a separate SPD diagnosis. I think they are doing this study in a few major cities in conjunction with Lucy Jane Miller at the STAR Center.
I was somewhat concerned with how I would present this to Scott knowing how stressed out he can get. But I did what they suggested and casually told him we were going to a special OT place where he would go in a pretend spaceship instead of his regular OT. This was much easier than I thought it would be, of course his OT is about to have a baby so he knew she wasn't available. He asked a few questions but I must have presented it well because he was not at all worried.
After swimming and lunch, we dropped Jane off at my mom's and headed down to center city. We live an hour north of Philly and really don't go into the city much. Scott is so intrigued by the idea of tall buildings and who does what in each one. While I was in Chicago he asked me if there were any houses like ours. I told him not where I was, downtown, but outside the city. He correctly concluded that if we live one hour from Philly that then one hour outside Chicago there would be houses like ours. He kept asking me, do people sleep there?, or is that a department (meaning apartment) building? or what do they make in the building? I was eating it up. Me and my bright kid on a big adventure in the city.
But of course I am the one who makes things a tad bit problematic. I was running out of gas as we got close to our destination and I didn't want to be late. But, hello, there aren't any gas stations right in the middle of the city, stupid-suburban-mom. I am pretty good with directions and do know the city well enough to get around so we only had to make one back track and we were in the parking garage. Good thing because Scott really had to go to the bathroom.
I hate parking garages. Especially in my big ol' Honda Pilot that isn't meant to be anywhere near a city let alone a city parking garage. I ducked as I went around and around up to the top floor. Scott and I got out and, lucky for us, there was a nice bathroom right inside. It turns out we were actually going into the Wills Eye Institute instead of the regular parking garage elevator. No matter, we got to use the clean bathroom and the fast elevator (Scott doesn't care for elevators so the quicker the better).
When we walked around the block and into the proper building we were greeted by Teal and another OT, Amy. Right away they made Scott feel comfortable and he was polite, even if a little shy (for him). They explained the spaceship ride and what would happen to him while I filled out papers. The ladies were super nice and kept encouraging Scott in a gently, OT, non-confrontational way.
I could tell that Scott felt a tiny bit duped in that the chair wasn't like an amusement ride. And he had to stay really still so they could get his resting heart rate and wear the EKG sticky thingies on his chest and then all he was going to get was a sticker. But he was extraordinarily well behaved. Which is so wonderful but also frustrating because, why can't he be like that all the time? I know, he keeps it together for others and also doesn't have his sister around to get him started, but still. If only.
So while they were getting him set up and going over it all with me I had a chance to get up on my soap box. One of the things that going to BlogHer has helped me clarify is what my intentions are for this blog regarding SPD in general. I told the ladies that what I really wanted was to raise awareness. Especially for parents and teachers. That we had been through such a difficult time because we were trying to fix our parenting when what we really needed to do was help our child. How I want to work toward early detection so that children can get the services they need before their self esteem suffers. Before families are torn apart and children get lost, frustrated and misunderstood. That we should be incorporating multi-sensory learning into classrooms and educating teachers about SPD. I tried to keep it brief because I can really go on about this and I think I was preaching to the choir. Obviously, they are already on my team.
As an aside, Oprah is rebroadcasting her Autism show today. I missed the opportunity to write about this when she first did it. Oh, and I have much to say. Once again, trying not to be too long winded, I will point out that I was shocked that Oprah said she had never done a show about Autism. Maybe I am looking for it, but it seems that Autism is all over the news lately. And I had a hard time with the number of children presented that had the kind of Autism that starts with a perfectly fine child and then at around 2 the kid just markedly withdraws, loses their ability to communicate and becomes severely Autistic. This is absolutely a terrible thing, but my issues is with the percentage of ASD kids who fall into this category. Is this a fair representation? I wonder, because many children are on the edge and some even consider SPD under that ASD umbrella. Awareness must include all children, not just those that are the most seriously impacted.
And this brings up another point in that we do this flip flop back and forth thing that This Mom posted about here (beautifully, I must add). Where we think Scott is fine and then think that he is so not OK. All the time. Every day. Sometimes several times a day. He'll start chewing on things or touching the walls as he walks around. Lunging at things, tackling Jane, completely out of control. Then we will be somewhere, like a restaurant, and he'll be great and we think, are we crazy? One minute we are about to order medication for him and the next we see a bright future. His mini-sports and games coach said when I picked him up the other day, "Scott's a great kid." Yes, he is. But I almost wanted to stay and ask questions. All the time? Give me examples? Like I needed this fresh-out-of-college kid to validate my feelings about my child. Sure every kid is good and bad sometimes, but the extremes, the roller coaster of highs and lows is so difficult to reconcile.
Back to the story:
The bottom line is that he did great. Exactly what they wanted. I did not watch the monitor, but I did hear him "hmmp" a few times after there was a loud noise or a flash of light. I wonder if they noticed that. His way of sort of centering, calming himself. If they had done this experiment with him 2 years ago they would have gotten completely different results. They said they couldn't do it on younger children because the kids wouldn't be able to sit long enough to get the resting heart rate. Too bad.
They asked him what he didn't like and he responded, "the smell, and the sitting still." He asked if he was going to do it again and they said no. He debated about which toy to take, the play dough or the ball. Finally deciding on the squishy yo-yo type of ball that I detest and he adores.
After we left the actual lab we had to take the elevator down one floor. And then the biggest event of the day took place.
We got stuck in the elevator.
There were only two other people, young woman, with us and it wasn't any all day affair. But we did wait a little while, maybe 10 minutes while the building maintenance guys fixed the problem. Scott was pretty un-phased as his real issue with elevators is the uncontrollable movement, not the fear of being trapped.
A trip to Starbucks and an elevator mix up later we were headed back home. I was sweating it to get the gas before we ran out. Scott's debrief in the car went something like, "that was ok, kind of boring, but I'd do it again if you wanted me to, can we call Daddy to tell him about the elevator?" As he ate all of my sandwich.
We ended up meeting Matt and going out to dinner without Jane. Which is nice sometimes. I really enjoy getting to spend time just with Scott.
Of course after he got back home and around Jane, the problems started. My perfect little lab specimen child was now the hell-on-wheels kid again. As he was going to bed I thanked him for being such a great listener and for being so cooperative. He said your welcome and then asked if he could get any money for his good behavior. I looked at him disapprovingly and then he felt bad for asking.
"Mommy, it's OK, I don't want any money, I'm sorry. I hope I was able to help the OTs so that they can help kids that need it." He promptly fell asleep and I stared at him: my intense, thoughtful, sensitive child. I know you helped them. Any one who meets you is impacted by you.
And I promise, I swear, to finally do my BlogHer post next, if I have to stay up all night to finish it. It will be crazy long and linky and probably boring as all hell and so out of date already that no one cares, but, hey, you've been asking. You know what they say, be careful what you wish for.
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