Charlotte has officially been diagnosed with Sensory Processing Disorder.
It wasn't much of a surprise to me, and the evaluation went quite well. The therapist is confident that Charlotte will respond quickly to therapy. Still, I feel a bit overwhelmed by what this means for all of us, especially all the extra work I will now have to do.
Interestingly, the hardest part of this diagnosis has not been my worry for Charlotte or my stress over getting her therapy done, along with Danny's. It's not even my frustration at feeling like I am totally starting from scratch on this SPD journey; Char's symptoms are so different from Danny's it almost feels like a completely different disorder.
No, what has been the most frustrating thing about this experience is the reaction of a very small number of people who have expressed disbelief in the fact that Charlotte might have SPD. I have acquaintances and possibly even one or two family members who think I blow things way out of proportion when it comes to autism, SPD and my kids. People who think the kids will just grow out of their difficulties, that I should quit worrying already. People who think I might possibly just be imagining that my kids are a touch different.
One family member highlighted this when she asked, "Are you sure Charlotte has SPD and isn't just imitating Danny?", which might have been a valid question if Char's symptoms resembled Danny's in any way at all. But they don't.
I understand that people's disbelief is just proof of their lack of understanding of SPD. And at times it stems from their lack of familiarity with my kids. I also know most of the time it does not indicate lack of caring for me and my family.
Still, it bothers me.
The reason people are shocked that Char has SPD is that her symptoms are quite different than Danny's. When Danny gets overstimulated, he gets a bit hyper, unfocused and sometimes even angry and aggressive. Danny will start running into people and objects and throwing himself to the floor. Other times, he might get really upset at someone for being too loud or for touching him, and Danny will yell.
When Char is overwhelmed, she doesn't lash out at other people. Instead she cries. A lot. And she will blow things way, way, way out of proportion. She gets hypersensitive over the smallest of things and she becomes quite unreasonable. I think many people just chalk this behavior up to being a girl, but I know different, because I know how reasonable, calm and focused she is when she's not over stimulated.
As long as she isn't causing trouble like disrupting her Sunday school class or knocking someone over, people tend to assume she is fine.
What they don't see are the sensory meltdowns when nothing can console her, and she keens for 45 minutes or longer.
They don't see that when we are in a bathroom, she begs me plaintively not to flush the toilet, because it hurts her ears so much. And if someone thoughtlessly activates the automatic hand dryer, Char will run away screaming.
These people who are judging me, thinking I am overreacting, don't see how Charlotte seems to almost leave her body when she is overwhelmed and she cannot focus on the simplest task. She zones out so completely, it scares me sometimes.
And they didn't see when she collapsed on the way into the grocery store last week, saying, "Mommy, I can't walk!" The don't know how weak her muscles are, how she will collapse in a puddle at my feet when she can't take any more.
I suppose this just proves to me that there is so much work to be done in educating people on SPD. It's not like the disorder is so well-known that I should be offended at people's ignorance.
Yet, I am offended, not at their ignorance so much, but at their doubt in my judgment as a parent. Sure, they may not know much about SPD, but don't they know me? Don't they trust that I am doing my very best for my kids, that I don't just randomly diagnose them with disorders whenever they misbehave?
I have studied SPD for 7 years now. I have read every book, article and website I can find about the disorder. I have attended seminars and spoken and consulted with dozens of therapists and doctors.
More importantly, though, I have lived with this disorder on a daily basis. I have helped navigate this sensory land mine that is Danny's life and we have had so many successes. I have a little experience with this, so why all the doubt? Why do people assume I have no clue?
I suppose the real question here should be why do I care? Why does it bother me when people doubt me or question my judgment as a parent? What difference does it make if someone thinks I am crazy? If I am confident in my judgment, those other people's doubts don't matter, right?
I'm sure it stems from my insecurity as a mom. Though I do not for a minute doubt Charlotte's diagnosis, I often doubt myself, my abilities to help my kids and my general performance as a mom. But judging from my many conversations with friends and from several of the blogs that I read, this insecurity can't be that unusual, can it?
I think we all feel this way at one time or another, right? And maybe it's not so bad to be insecure sometimes. I mean, when you are doing the most important job in the world, you are bound to worry about performance, especially considering the learning curve involved with parenthood.
Or am I just kidding myself?
Please tell me that I am not the only mom out there who sometimes lies awake at night obsessing over all the times I have screwed up with my kids. Tell me you doubt yourselves sometimes.
Please say I am not alone in this insecurity.