Wednesday, September 15, 2010

what's worse than having two kids with SPD? Let me fill you in.

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.



Anonymous said...

Do I really need to tell you you're not alone? :-)

You are not alone in ANY of this. I hate that you're having to go through this again, but Charlotte and Danny are SO lucky to have you as a mom. You are one of the smartest, most self-aware mom/writers out there, and it's no wonder you're one of my top five favorite people to read. I feel like we're living the same life sometimes.
as for all those other people out there? forget them. All that matters is what you know. Not them. Tell them to take the 7 day test sometime (the live in my house for 7 days and see what you think test).
Asking questions is how we get answers, but don't for one second question that many of us are standing right behind you, giving you a virtual "high-five" for being an awesome mom :)

Evenspor said...

Of course we all feel insecure. And if I were you, I know I would be annoyed. While I haven't had anyone doubt that Beeper has ADHD, I have had someone tell me that I don't and where her "diagnosis" came from, and that ticked me off (she's not even a close aquaintance). I have had people doubt my judgement as a parent in other ways, and it is definitely annoying. Obviously you are quite knowledgable on the subject of SPD, but more importantly, no one knows your kids like you do.

Jenni said...

every day, sister. every. single. day.

Jaimee said...

You are most DEFinitely not alone. I'm sorry you didn't get more support from those around you regarding Charlotte's diagnosis!

Michelle M. said...

You are not alone. I doubt my decisions daily. How our children will turn out is the sum of our talents as mothers. There is nothing we will ever work toward that is more important to just get right. Hang in there-your peanuts are going to be fine in the end; because you are amazing, loving, and talented. (Although I've never met Bill, I'm sure he's pretty great too.)

Anonymous said...

First I gotta say thanks for stopping by my little blog. It's great to have you:)
Then let me say you're not alone. You care so much when others question you not necessarily because you doubt yourself but because you know that for each person questioning you it's one less person to support you and your children. At least that's how I feel. As the parents we do know what's going on. Often times we're the LAST to admit it. We need all the support we can get when we do. Fortunately you do have all of us sending virtual hugs. Hope it gets better.

Ginny Marie said...

Oh my gosh, after I dropped off my little girl at Kindergarten a couple of days ago after she had a screaming, crying tantrum because we drove to school and we are supposed to WALK to school, I felt like the worst mom ever! Sometimes I forget how little changes in our routine throw her off. And that shouldn't make me feel like a bad mom, but it does!

Susan said...

It's hard.
For the life of me I can never figure out how ANYONE can be against a parent knowing their boundaries, what they can and can't handle and asking for help when they need it.
I kidded myself into believing I was a bad mom with Nolan, people's glares, the judgment it caused great pain for everyone.
Having the assistance with handling his SPD is the best thing for all of us. And I would be a bad mom if I didn't get the help.

Sarah said...

Well you are familiar with our story and you are most definitely not alone. The most ignorant thing ever said to me was "how did you get so lucky to have 2 kids on the spectrum". I was floored not only by the insensitivity but the implication that perhaps I too was reading too much into things.

The only people you need to answer to are yourself, your husband and 3 beautiful children. Everyone else can either get on board or be left at the station.

Denise said...

Oh Patty, you are not alone...if only I had a penny for all the times I felt I made a huge mistake, or lied awake fretting over an action taken, or wondered if I'm doing it all right, or felt insecure about my parenting abilities, or compared myself to other mother's that I just THINK aren't so insecure, etc etc etc...THEN...if I had just one single penny for each of those times in the last 13 years...I'd be a wealthy woman and wouldn't be going to school. :)

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a Tonggu Momma said...

You are NOT alone. You truly aren't. And I also hear all the time how we talk too much about "adoption stuff" around our house. People judge... it's just what they do. Hold your head up high and feel reassured that God chose you to parent these specific children for a reason.

The Caked Crusader said...

Don't let ignorant idiots grind you down - you know what's right!