Loving A Child With Sensory Disorder 


I just got home from my children's dance class. The first thing I did when I got in was go to the mirror to check my face. The fact is: I cried the whole way home. Big tears. Lots of them.  My daughter did great today. Not that I know first hand. I didn't get to watch her. 

I didn't get to watch my sweet little girl dance, just as most of her accomplishments, and sweetness, goes unnoticed. If I am blessed enough to witness her being wonderful, I rarely am capable of praising her and making her feel good for all that she does right. 

The reason: I have another child, and that child has sensory disorder. 

   Sensory disorder is something a parent has to react to by gut. 'Today is not going to go well if we leave the house.' 'The smell in this store is going to be a problem, we have to leave.' 'This restaurant seems busy, we may not get the water in time.' 'The toilets here are self flushing and loud. We can't stay long. We need to leave before he needs a bathroom.' It is a life of preemptive worrying, and pre-planning for things that we don't personally understand. It's a lot of cancelled engagements, and declined invitations. It's a lot of eggs for dinner because it wasn't a good day to attempt the grocery store. It's a lot of stares from strangers, unwarranted advice from people that have no idea what they are talking about, it's a tremendous amount of embarrassment, and the realization that the parents at dance class will never want to talk to you, but surely will talk about you. 

Every tiny human is different. Some only react to a few sensory triggers. Some, like mine, respond to all. When he feels sensory discomfort he is instantly overwhelmed and panicked. His reaction to this feeling, is to gain control by attempting to control his environment. This might mean acting so out of control that I remove him from the place (not so great when I have a full cart of groceries and we have to leave them in an aisle and go home empty handed), or screaming at the top of his lungs as the toilet flushes in the library. 

   Today, it meant tearing curtains off of windows and  knocking over piles of mats, until he was escorted out of (and asked not to return) dance class today. This is, I think (because, as a parent of a sensory disorder child, everything is a guess), is because the door to the studio is closed, and even though it is a large open room, he does not do well being confined. The flip side: just like any other child, rejection is not something he handles well. Being 'not welcome' at dance class anymore made him feel out of control again, and he reacted by kicking the glass windows, screaming, and biting himself. My son is five, and very loud, as well as strong. 

The problem when things like these happen in public, which is usually where they happen, is that the insanity of it all usually comes with an audience. A large, collective, judgemental stare, if you will. Some days the faces contain some pity, but it's usually horror mixed with 'what kind of mother are you?'. 

This, I can handle. I can handle looking like the town degenerate because I can't control my child. I can handle people staring at me. Screw them, seriously. Walk a mile in my shoes. Sorry your kid is perfect. Pfft. 

The thing I can't handle; the thing that brought me to streaming tears the whole ride home; my daughter will always be slightly neglected. She will always be brushed aside during crisis with her sibling. She will always be standing with me, next to me, and see people looking at us the way that they do. She will feel different, like I do. Her accomplishments will be briefly touched upon, because of course she did a perfect thing, while her brother will get accolades for NOT licking the grocery store floor. We will stop getting invitations, because having us around is stressful. And the worst part? She occasionally intentionally acts just like him because she wants attention too. I am accidentally showing her that bad behavior is how to get my attention. 

When you love a child with sensory disorder, every last bit of energy goes to them. Any smile you muster beyond that comes straight from the reserve. My daughter gets every inch of everything I can possibly pull out of myself after the tantrums have subsided. I give her every bit of myself that I have left. 

I'm just worried that it's not going to be enough.