Thank you so very much for the incredible response to my last post. I was hesitant to post it. I was so nervous about revealing so much of my experience with Madeleine. I am so happy I did (thanks for the push, Linds!). Not only am I overwhelmed by the quantity of positive, encouraging, supportive and loving responses (email, facebook, phone calls), I am so pleased to have heard from several other people who have once felt the same way I do. You have no idea how much each message I received lifted my spirits just a little more. Let the veil of loneliness lift!
This week has not been an easy one in our house (but really, we’ve had only a couple of those since Maddy was born so we’re used to that by now). Eric had to pull over 10 minutes from our house today on his way home from work to nap for 20 minutes so he could arrive home safely. Just a few minutes ago he left the house exasperated because I am challenging wheat today (fingers crossed Maddy does not react to it again), and he is determined to give me barbecued hot dogs for dinner (we would go for hamburgers but beef is still off-limits). Just before cooking dinner, he realized soy was in the hot dog buns (also still off-limits). I told him not to worry I’d just eat something else, and no word of a lie, he responded, “No! I said you could have hot dogs and I’m giving you hot dogs!” before he left again. But, he just called from the grocery store. Looks like we’re having hot dogs with sandwich bread, haha. I guess these things matter more when nothing else seems to be going your way.
I’ve had a lot of questions about what exactly a sensory processing disorder (SPD) is, and what it means for Maddy and our family. I’ll do my best to explain it to you, but keep in mind this is all new to me and I’m not an occupational therapist (OT). SPD is a neurological disorder (read: the way your brain is wired), that makes it difficult for an individual to process and respond to their 7 senses (visual, auditory, tactile, olfaction, gustatory, vestibular, and proprioception). Individuals with SPD can have
thousands tens of thousands of different presentations of the disorder, so I’m going to only specifically talk about how SPD is affecting Madeleine. It can take up to 10 therapy sessions for an OT to understand a child’s specific sensory needs, so I’ll describe it as best as we currently understand).
Our OT believes that Maddy has what they call low sensory registration. That means that she feels most comfortable and secure when she’s provided with additional sensory input (visually, auditory, proprioception, and vestibular). In other words, she does not feel those senses as strongly as you or I do.
So what does this mean? It means a lot. Briefly, it means that she has no sense of where her limbs are in space, or how she’s oriented in space relative to the ground. A perfect example of how this impacts development is crawling. For three months now, Maddy has been trying to get into the crawling position. Sometimes she’s able to, but more frequently, one of her legs gets caught. Since December, people have been saying to us, “She’ll be crawling any day now.” The thing is, we have never seen her try to crawl. If she managed to get into a crawling position, she would just cry and fall onto her belly. In three months, she’s made zero progress. If Maddy didn’t have SPD, she probably would have crawled by now. But think how scary it would be to try to crawl without having a sense of where you are.
Another example is her interactions with other babies. For awhile now, we’ve been calling Maddy a bully. She likes to push other kids around.
The OT explained to us that this is her trying to feel joint compression. She has to push hard, because unlike you and I she can’t feel it if she doesn’t. This is also the reason why the only way she plays with toys is by banging them together, and pushing them away from her, and why when we hold her, she pushes away from us.
In contrast, she also seems to have a hypersensitivity to tactile sensory input. She hates having things around her waist. We’ve stopped using cloth diapers, and putting pants on her, as these both seem to bother her immensely.
So what changes do Eric and I need to make? Well, we’ve already started making some. Maddy now gets two baths a day (yes, two a day folks!). Her first is immediately when she wakes in the morning. The second before we feed her dinner. The water provides resistance, which allows Maddy to “feel in her own body”. We also spin, throw, swing, and deep massage Maddy regularly throughout the day. Feeding has been an experiment these past few days. Sometimes she’ll eat if we hold and bounce her. And, super daddy came up with a great new technique based on this: laundry basket play.
Maddy loves this so much because she can feel and push against the four walls to orient her body. Eric has started feeding her in it too!
Maddy is still a tough baby to be at home with. She deteriorates as the day progresses. However, I’m sure as we start therapy, we will learn better techniques and I will continue to share our experiences with you.
This week I have been alternating between feelings of intense sadness and those of hope. Each day the feelings of hope take a stronger hold over the feelings of sadness. Does our baby girl have special needs? Yes, she does. But, you know what? We’ve got this.