The first time we had a “your child has sensory issues” statement thrown my way during an assessment I was relieved. I was relieved because I knew he was different in my mama gut and I kept trying to tell friends and family to treat him a certain way that I knew would help him, but it often got brushed off. I remember clearly once having someone hug my child as he squirmed to get away and me stating, “He doesn’t like that,” and the reply being, “I know,” with a smile. Oh man, my blood BOILED. I have since learned from my research on Micah that I share some sensory issues with him, and I know the feeling of utter panic it inflicts on me to be hugged or even touched against my will. Even if I see it coming, my stomach bottoms out. And I KNOW you can’t “hug it out of me” even though you think you can. It’s an actual neurological issue. So to be able to state, “The professionals say Micah has sensory issues and should be approached this way,” was the “proof”, the validity, I needed to be taken seriously on his behalf.
Fast forward a couple of months and I get the diagnosis of SPD. Sensory Processing Disorder. Somehow actually being labelled with a disorder that I know now he will never completely “grow out of” hit me hard. This was more than just “issues”. This was a lifelong thing. Sure, he’s young enough to rewire some of his brain, and I’m already seeing so much progress in him, but to know that he will never be 100% “normal”, and that he will have to learn coping mechanisms and struggle like I have, hit my heart hard. I think I grieved deeply for a solid week. Every time Nick would come into the room and look at me he would ask how I was and my only answer was, “Sad. I’m so sad.” I literally felt like my heart was in my stomach. There was a physical heaviness sitting there. Especially when we thought he might also be on the spectrum, which thankfully it looks like he is not. The day I received the diagnosis, I made him Kraft Dinner for supper because I wanted to give him something good, something he would like in a world that suddenly loomed before him as extra hard. And I stood in the kitchen full of emotions watching him eat it while he sat in front of the t.v. because my kid deserved dinner AND t.v. that night.
I view everything a little differently right now. I’m still in the process of grieving so it’s still tainted with sadness. When I see him in our family videos crying about something we thought was silly, I now can instantly pinpoint what was overstimulating him in that moment and I hurt for him. When kids try to hand him toys that are age appropriate or engage him in conversation and I see him struggle to use something “properly” or not know how to talk back and forth with them, I hurt a bit for my boy. When people tease him or don’t remember his limits I get panicky inside. I don’t know when to step in and protect him and when to let it go. I feel my mama bear straining at her leash and I want to shout, “He’s doing the best he can right now to keep his cool and what you think is fun is going to push him over the edge.” I cringe inside as I remember the times we tried to get him to eat something new and he ended up with it trapped inside his mouth unable to swallow, but too scared to spit it out. My husband handles these situations better than I do, praising him for trying and drying his tears. I hang back or run to get dessert to distract and reward him because I personally know what the panic in that moment feels like, and, no, panic is not too strong of a word. I have my triggers as well – not food – but they cause the panic to surge inside me too over something completely ordinary. For example, I feel like I’m drowning if water even hits my face. It’s irrational, I know, but it’s my sensory trigger. I have mine and he has his.
I think 5 steps ahead with everything. Even this weekend. Sledding? Okay. Where? Are there bushes nearby? Will the bushes brush up against him? How steep is the hill? Will he go too fast? My husband and I spend a chunk of the car ride explaining to him how sledding works and hoping he understands with his limited vocabulary. “No go down. Slippy,” he says. We assure him he doesn’t have to if he doesn’t want to. And then I see him try, last 3 minutes, get snow down his back from a bush, and go inside. I knew it would happen like that, but it was important to try. I come inside a bit later and see grandma has settled him with a comic book and some hot chocolate and he is happy. Him being happy makes me happy, but I yearn for more for him.
Friends tell me about their kids’ activities or accomplishments, and I am happy for them. Honestly, I am, and I don’t want them to stop sharing. (If you’re reading this and you’re my friend, let me still celebrate with you!). But at the same time my heart sighs a little because I’m over here sitting with our occupational therapist creating goals for my 3-year old:
- Less bad days. I want my boy to not be sad and spent 5 out of 7 days of the week.
- When can he learn to take his own clothes off?
- I want him to talk to other kids.
- Putting stickers on the stairs to help him walk up and down them properly and stop crawling.
- And how on freaking EARTH are we going to potty train a kid with a sensory diagnosis?
But then I have to remind myself of all the good. We caught it EARLY. 7 months ago it was like torture to make him walk on the sidewalk and asking him to walk on a dirt path would cause him to sit down and sob. Now he runs. Awkwardly, but he does. He runs on DIRT. Two days ago I had my first moment ever of, “Oh my goodness, child, go watch t.v. and stop TALKING to me every 3 seconds.” His vocabulary might be massively delayed, but he has one now. 7 months ago he had maybe 15 words and now he has over 100. Too many to count. Last week, I saw him initiate contact with another child to play that was not his brother. Again, it was awkward and he kinda just stuck his face in hers and then ran a few steps laughing trying to indicate to her to chase him, but it worked. He engaged. He tried. It’s coming along slowly. I mean, heck, he even CUDDLES with Nick or me now when he’s not feeling well and can name at least 3 emotions to help express himself. I have to celebrate all these victories.
So what is it like being a mom to a kid with SPD? It’s emotional. Always. It’s so sad, and so mama bear mad, and so happy over baby steps. It’s discouraging to know I share some of his issues and that he probably inherited them from me, but so encouraging in that it feels like we were made for each other. Two odd puzzle pieces that “click”. I am so blessed to have amazing friends and family surrounding us and helping us navigate through this. And as I sit here thinking how to wrap this up I hear Micah off in his room having quiet time stating to no one in particular, “I’m happy”, and friends, I think that says it all for now <3.