Wednesday, August 25, 2010

Semantics

This summer has been a tricky one for Lola. Honestly, I think it has actually been more of a trial for Bubba and me, but it started out tough for Lola with this.

I got some feedback from the naturopath, who suggested we run some tests. I spoke to my therapist who had me answer a series of questions rating Lola's behaviors in different situations. I confided in Carrie who pointed me in yet another direction. Is this sounding familiar to anyone? Bubba was not convinced. In fact, he was horrified and offended. Not his little girl. She is just quirky. Different. One-of-a-kind.

The therapist is fairly certain it is ADHD. Even though Lola has never been in trouble at school and her attention span is terrific, her need for constant motion, both asleep and awake, coupled with her inability to transition and low threshold for places like Costco, spell ADHD to her. She suggested we have her formally evaluated and try a course of medication. I nearly stopped seeing her for that. The fact is, I'm not going there yet. Nowhere near yet. Lola is lovely. She is wild and crazy and irreverent and funny and unpredictable and clever and the most loving child I've ever met. The possibility that medications would change her into someone who is calm and quiet all the time scares the crap out of me.

Carrie, on the other hand, asked me to check out something called SPD - sensory processing disorder. Jackpot! I printed out a thirteen page checklist and Lola and I sat down with a highlighter to mark it up. The list was broken down into sections for each sense: hearing, sight, taste, touch, and smell. Within each of those sections, there were questions about hypersensitivity (oversensitive) and hyposensitivity (not sensitive enough). We knew all of these things, but seeing the pages striped with bright green marks, leaving not very much white space behind was pretty telling. Lola is incredibly sensitive to smells and sounds, but craves touch (wrestling, squeezing, bouncing, twirling, tickling and being upside-down) and taste (sour foods like lemons don't even make her cringe and when the last pickle is gone from the jar, she gets a straw and sucks out the juice). The more I looked, the more we found Lola in the pages of this list.

My therapist warned me that "SPD isn't an official diagnosis, but is often a part of ADHD," but I'm still not going there. It's not that I'm resistant to Lola being ADHD, it's that I don't think she is. Truth be told, I'm resistant to Lola being labeled anything at all. Every time I talk to someone about SPD, the "D" (disorder) makes me cringe. I've found the "D" standing for dysfunction in other places and I really just want it to stand for "difference." Lola is intelligent enough to know that she is different from most other kids and she is the one who came to me complaining of some symptoms, but I really don't want her to begin thinking of herself as disordered or dysfunctional. Before we headed to the doctor's office yesterday, I sat down with her to let her know I was going to share the checklist with the doctor and ask for some ideas from her. I wanted to be sure she was comfortable with that and didn't feel as though anything was "wrong" with her or that she had anything to feel badly about. She seemed okay with it, but once we were in the exam room and the doctor and I began talking, she curled up on the table facing the wall and burst into tears.

Thankfully, our naturopath spent several years as an occupational therapist before becoming an ND and she has some tricks up her sleeve to help Lola begin to integrate her senses better and feel more comfortable with them. Bubba still isn't convinced, but he's willing to look the other way so long as the things I try with Lola don't require a diagnosis or a prescription. I get how he feels. Lola is special and lovely and wonderful just the way she is. Neither of us wants her to change and we certainly don't want this magnificent child to be labeled as something lacking or deficient or abnormal. This is a delicate dance I'm learning the steps to and I'm not sure I want to be on this dance floor.

4 comments:

Anonymous said...

Very honest and sincere description of dealing with out of norm kids, but which norm, whose norm? Who decides what is normal or not, especially in behavior related issues.
As much as I love all of you, I would just remind Bubba that some things can never be diagnosed fully and/or treated at all, even with medications. If medications and an official diagnosis can help why resist? for the sake of what?
Regarding SPD, there is incredible meeting coming up in Bellevue WA called "Sensory Processing Disorder Foundation presents 11th International Symposium and Pre-Conference Institute". It is in November. The link is
http://www.spdfoundation.net/symposiumseattle/index.html
It is open to professionals, teachers and parents as well and is highly recommended by therapist (OT). All the big names in the field will be present. Check it out. I just got the flyer from one of my OT friend.

-Isabelle

Wanda said...

Don't get me started on Diagnoses!

Deb Shucka said...

Don't you love Carrie's wisdom?

I'm so proud of you for including Lola in this whole process, for protecting the essential spark of who she it, while at the same time doing everything possible to accept the whole enchilada and to help what interferes with her feeling whole.

Denial is understandable, but in the long run only causes more harm.

Alicia D said...

this will be a journey and i wish you all the continued wisdom you have with this. so difficult, i do know. having answers just provides a little road map to help our children be the best of who they are. it sounds like you're finding your way with it and avoiding the potholes :). hang in there!!

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