I feel like a nut job taking my baby to a psychologist, but I finally break down and do so when she is a year and a half old. She is always on the edge of a meltdown and when she finally slips over the edge her rages last so long that she sometimes has to nap afterward. Almost anything will throw her into a fit. Telling her no. Correcting her. Making her wait. Changing activities. Changing clothes. Changing anything. Getting in the car seat. Getting out of the car seat. Giving her the wrong cup. Giving her the right cup after giving her the wrong cup. Etc. Etc. Etc.
The pediatric psychologist gives her a diagnosis of generalized anxiety disorder at 18 months old. Talk about a parental guilt trip inducing slap to the face. I ask myself what I’m doing wrong every couple of minutes. The psychologist refers me to Harvey Karp and The Happiest Toddler on the Block. The book title makes me want to barf all over myself. I don’t want the happiest toddler, but I don’t want the nastiest one either. At this point I just want The Slightly Less Disgruntled Toddler on the Block, so I read the book and even watch a video and it really helps. I get down below her eye level and start “mirroring” her emotions by stating what I think she feels and why she feels that way. I also talk her up and talk myself down by saying things like, “Give me five!” letting her smack my hand and then pretending it hurts like the dickens. I praise her every good deed and then I pretend to trip and fall and make tons of mistakes. She thinks this is a hoot and as Martian as these behaviors seem they start to make her feel better because, to borrow a phrase from Charlie Sheen, she feels like she is “winning.”
I have to admit taking her perspective also helps me to understand. It must really feel despicable to always feel out of control of your own body, and to always feel like you are losing. Unfortunately for us these techniques only work for a couple of months and then she is on to me. I am the one who has a fit on the day this stops working. Like usual she starts freaking out and I say “You are SO MAD! You want to go outside NOW!” She looks at me and screams “NO TALK TO ME!” then starts swinging at me repeatedly. I think… “Oh schnikes. She’s figured it out.” But really it was probably just the old SPD sneaking up on us again.
I finally break down and do something I swore I would never do…I start using my costly education on my own daughter. I use emotion coaching and picture schedules to let her know what will happen and…gasp…it actually works. Her wonderful daycare provider uses the same techniques with her and we all notice a huge change for the positive, but compared to other kids her age she still struggles like a worm on sandpaper. Maybe that’s how she actually feels.
Taking her out of the house is always a nightmare. She is going to throw at least one massive tantrum for every outing, and on a particularly lousy day she will throw down two or three. Her fits still resemble a demonic overgrown baby doll similar to Chucky, only minus the overalls and knife wielding skills.
Right around this time I find out I am pregnant with Kira and have my own panic attack. How am I going to deal with two of them? What if she is just like Gwen? I will surely die. Thankfully, Gwen has finally stopped hitting and kicking me when she melts down. Instead of beating on others she now just sort of throws herself into the ground repeatedly. I worry about her breaking a bone, but I finally stop worrying about what other people think when she melts down in public because I tell myself if they had to do this for a week they would finally understand what I am going through. And probably run out the door screaming. I walk around with hiked up shoulders, barely breathing because I am always waiting for her to flip the heck out.
To add to my perpetually anxious state we move across the country for the second time when she is around two years old…and at the same time beautiful Kira joins our disordered world. Gwen does much better than we expect in handling all the changes, but I am sure this is only because we do everything humanly possible to prepare her. We talk about what will happen. We write and illustrate stories. We enlist the help of grandparents. We knock her out with whiskey. Just kidding on that last one….I promise.
Then winter happens. Most kids with SPD need to be outside running around almost as much as they need air. This winter just happens to be below zero almost every day, causing all of us to stay in the house and go stir crazy. Okay, what I really want to say is that Gwen’s SPD makes us all even stir crazier. We just don’t know what we are dealing with yet.
The day we hang a swing in the basement Gwen says, “This is the best day of my life…!” and it really is a great moment…for both of us. This is when I start to suspect the sensory issues and talk to people who can help us. Of course there are still people who say she doesn’t have any problems and that I am crazy. Well, everyone knows I am crazy, but my kid sure the heck has problems and I am more than okay with admitting it. If anyone wants to question it just come and hang out with us for a week. I guarantee everyone present will finally say, “Now I get it.”
I call her doctor to get a referral for an occupational therapy evaluation and I am expecting to have to beg and plead because Gwen is always the epitome of cool, calm, and collected in the doctor’s office. I speak with the nurse and she asks a few questions about what we are noticing and gives the go ahead with absolutely no problems. I am blown away and yet grateful that we have a doctor who believes in the SPD diagnosis, because some still don’t. We get her into occupational therapy and the OT comes out after the evaluation and says… “Well, she sure is a sensory kid.” I let out a breath I was probably holding in for three plus years.
The occupational therapist also diagnoses her with dyspraxia (motor coordination disorder) which often goes along with sensory processing issues. In terms of SPD Gwen struggles with the following senses: proprioceptive (pressure), vestibular (movement), tactile (touch), self regulation, oltfactory (smell), gustatory (taste), visual (sight), and auditory (hearing). These are individual senses that work together to help us navigate the world. No wonder she was a sinking ship for so long. So now I look at her with different eyes. Instead of seeing her as a naughty little child who is trying to ruin my life I see her for the mostly sweet yet struggling child she has always been.
Of course sometimes I know she is just being a pain in the butt, but I am starting to see the difference between sensory issues and typical annoying kid issues. Gwen is getting stronger and she is starting to understand herself and the things that soothe her. Just the other day we were planning on going out to two stores. We made it through one and she said, “Can we just go home instead. I can’t do anudder store.” Some parents would be annoyed by this. Some parents would just make her go along and hope she didn’t flip out. I was overwhelmed by her ability to understand herself and communicate her needs in a way that most adults can’t. So we went home.
I plan on writing future posts that delve into each of the sensory areas that Gwen struggles with and what we have found that works to help her. I am sharing our story to help bring awareness to SPD and this unique and often vague struggle. Maybe one parent of one child will read this and be comforted and helped. If you have any questions or comments please do so using the contact page at www.onlynowiknow.com
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