Dr's Appointment

Sydney's evaluation for Sensory Processing Disorder is tomorrow. I am very interested to see what the doctor says. I finished the book last night that the doctor told me to read, "Sensational Kids". It had some very interesting thoughts in it. First and foremost, it said that they do not know the exact cause of SPD. They have a 'top ten' of things they have found doing research. One of the theories was that it is hereditary--but it said mainly that they do not usually have to look at people past the parents. From what I can tell, I do not have sensory issues like Sydney--and I really don't know about Kory. I know he was extremely shy, and I know that sometimes Syd's SPD (assuming that's what it is) is confused by others as shyness, so maybe there's something to it. The other cause that really stood out to me had to do with troubles with the pregnancy or at birth. They looked at 100 kids with SPD, and out of those 100 kids, 11 of them were breach, and 63 were C-Sections. I'm assuming that with all the other issues these kids had at birth, they had to be put on oxygen right after they were delivered--just like Syd and just like my nephew who also has sensory issues. This makes me wonder if that didn't "heighten" Syd's sensitivities. I remember when she was a baby how she would startle so easily--you could be looking right in her face, say "boo" quietly, and she would startle. She still startles easily--which is a nervous system reaction. Morgan does not. Isn't that interesting?

At the end of the book, among other appendices, the OT/author wrote a "Sample Letter for Helping Others Understand your Sensational Child". Here are some excerpts from that letter (I have edited some of it to apply to Syd's situation):

Dear (insert name here):

I know Mom has told you about my "hidden handicap" called Sensory Processing Disorder. People sometimes call the disability "SPD" or "sensory integration dysfunction" too. SPD is a neurodevelopmental disorder that affects my brain and makes it different than your brain.
SPD is a complicated disorder and research is only just starting to come out about it. What we know already is that kids with SPD are not all the same. Some kids are over-responsive to sensations, which means they find a lot of sensations offensive. This causes them to have a "fight/flight" reaction to messages from their senses. . . (the letter goes on to describe other types of sensory disorders). . .
I'm the over-responsive/sensory defensive type of SPD. My SPD makes it hard for me to correctly interpret the sensations I feel. I'm sure you remember last year when I hid in my room when everbody came over for Thanksgiving. I couldn't wait for everybody to get there, but when they did I couldn't handle/process all the noise and people, so I went in my room. Then later I had what Mom calls a "meltdown."
Sometimes people think that if I don't join them at the meal table it's because I am being rude. The sounds, smells and people get to me.
Sometimes people tell Mom and Dad that they just need to make me get used to things like the boat or the wind or the circus, or places with a lot of activities and noise. The reality is that I CAN'T get used to them. If I am in a new situation where I can't predict what is going to happen, I get scared and have a meltdown because I cannot process all the messages that are coming into my brain. Forcing me to do something will put my brain on overload, and then nobody will enjoy their time. Asking me to do something over and over that my parents have already tried to get me to do won't help.
You know what's most important to me? It's that you don't judge my parents' efforts. Everyone is always giving them advice about me or saying I'm just fine--like THEY know better how to handle me than Mom and Dad. But nobody else lives with me, and it's really hard on my parents when people who don't live with me try to tell them how to do it. They know you have the best intentions but, honestly, we have been through a lot already and they are so familiar with my needs. They are such great people and they need your support.
It might sound like I'm asking you to change yourself, but I'm really not. I just want to ask you to be patient with me and understanding with my parents. I am trying hard to cope with everything, and they're doing their best to help me.
Do you think you see the world now a little bit like I do? That's what I hope. I am just me. I am like you in lots of ways and I'm different in other ways. There will be a place for me in the world, and I plan to do great things when I grow up. But in the meantime, at family celebrations, we'll all have a better time if you can take the time to imagine how I feel, to realize that I want to be "good" and participate, and I am doing the best I can!

There were many traits described in this book that opened my eyes. For example, a low tolerance for frustration, or being slow to reach milestones. Syd did not walk until she was 16 months old. She was very slow to learn to ride a trike or her little bicycle with training wheels. She was always pretty clumsy--I remember joking how she was just like me--poor kid--but gymnastics has done wonders with that, working with her balance and building her muscles through play.

I'll post tomorrow night about Syd's appointment with her doctor and what we find out. I'm hopeful to see some positive changes in Sydney, assuming we are given activities to work with her or a referral to an OT. Anything we can do to help her will help the whole family, as I know it has put a strain on my relationship with Morgan.