xoxo, Mama Pants
I don't have any medical degrees or any advanced degrees for that matter. The only way I know how to talk about scientific things is through my personal lens. In the end, I think it's equally important to tell these personal stories. Dudes, we have become so removed from personal experience. The internet allows us to troll and judge with almost no consequences and I am a firm believer in the power of opening up your personal story to connect in this age that would have us all sit behind keyboards and form opinions about things we know nothing about. And yeah...I'm already rambling. Did I really just start this by talking about Restless Leg Syndrome?
Stay with me. I want to tell you parts of our sensory story. Because I read an article this last week that has me feeling all the feelings and thinking all the thoughts. I also committed a cardinal internet sin...I read the comments.
Shang, you guys. (FYI Dang + Shit= Shang)
So here I am and I'm gonna tell you what this article stirred in me. Please give it a read so we are on the same page. Or don't. I won't be mad.
Oh, the brain and its weird shit. Right? It is bigger and smarter than we are. I am no neuro-scientist which is a good thing because if I was I'd be a fraud and making shit up. I don't think that way. BUT what I am is a mom who gave birth to and lives with a child who struggles with sensory integration. In fact, he struggled from day one.
How about a quick litany? Doesn't everyone love a good back story?
Mr. Pants a five year-old Loudy Von Talky McEnergy Bunny/my awesome son and more often than not he cannot gauge how strong he is (He's really strong) and breaks things or parts of people and their things. He's working on that. He has exhibited strong signs of OCD almost his whole little life. He eats only about 6 foods and that number keeps going down though he is trying really hard. His body temperature regulation is wonky. He gets very cold in the middle of a heat wave and if he has a fever, you won't know it by feeling his head or neck. You will know by how hot his hands are. Weird, right?
Ok, lets see, as an infant any kind of tilting back caused incredible distress in him. Car trips caused him so much pain that I didn't go anywhere unless I had to. When I had to? I cried along with him because it was so fucking awful. The speed with which I pulled him up out of that car seat was ninja worthy. Swings were out. Touching his bare feet to grass, sand, cement or mud caused panic. He didn't speak English until he was 3. In fact, he created his OWN language, one that we began understanding.
It took me a really long time to realize that most parents were not floating their 4 month- olds in a tub of lukewarm water upwards of 5 times a day to ease the crying. It took Plum being born for me to actually see clearly that Pants was experiencing life so much differently than the majority of kidlets.
There are times when touch is so upsetting to him and times when he needs hugged so damn hard I am afraid I might crack him in two. It took him until about 3 to respond to pain. Seriously, this kid would run full-on into a table edge and split his lip and it would make him LAUGH. Around 3, he began to feel pain and it was horrible. He didn't understand it. He still doesn't. When he gets injured, I have to walk away from him because he becomes extremely volatile and explosive with anger. Attention compounds it by a million. Can you imagine seeing blood coming from your child and knowing that you must walk away and pretend nothing happened just so he will calm enough to allow you to treat it? If I don't ignore the injury long enough it becomes an actual fight. He would rather continue hurting himself than let me look. It goes against all of my instincts. I would bet it goes against ALL mothers' instincts.
Ok, I'm trying to hurry up here...there was/is just so much. Fear of loud noises? Check. Clothing resistance? Hahahahahahaha...bahaha...HA! Hahahahaha...I mean, (nudie) Check. Need for deep pressure? Check. Oral defensiveness? Uh-huh. Does he wedge himself into tight and dark spaces every single day to "turn off"? Yepper! Is he the quirkiest kid we all know? Yep. Do I need to plan for all the possibilities every time we venture into public? Oh, yes. Am I the mom that packs WAY TOO MUCH for every outing? Not because I am an over-achiever (trust me) but because I know I need to be ready at all times. Sometimes, panic can be relieved with a wubby or his favorite song. Is he socially awkward? Um...yeah. In fact, he is scripted with lines from TV shows and music about 80% of the time and no, it doesn't always make sense. He has learned to trust his close friends and family enough that this is not a problem but I can't even tell you about what happened to him at the pool the other day because it will make me cry on this keyboard and I'm not doing that today.
He went to the same school for two years and he still won't talk to the class. It's because he cannot read the room. There are too many people and factors that overwhelm him so he bottles up and doesn't speak. And no...he is nowhere near shy. That's not it. Trust me.
I'm gonna stop there even though I know I am missing things. Probably a million things but you get the gist. He exists differently. Awesomely, but differently.
From the day he was born, he has taught me how to be his mama. He has shown us how to parent him. He has trusted us enough to meet his needs. It's a job I am proud to have and its an honor to perform. Do I want him medicated? Nope. But I would be lying my ass off if I said it wasn't exhausting. I would be lying if I said it didn't ever bother me. I'd be lying if I said all of this, that which makes him who is, doesn't scare me. Not because of him, though. It's because of YOU.
I don't mean those of you who are regular readers or those of you that know Pants personally and love him. I am talking about the rest of YOU. The royal YOU, if you will. You know...society. The people that have and will encounter him at the wading pool as he does his thing and scurry their children away from him. The people that will judge him because he is not the same. The people that will judge me because they think I am some kind of permissive parent who doesn't discipline. Those are the people that scare me. Because they are the people that can make him feel as though he is less than. Those are the people that can teach their children that he is "not normal". They are the people I want to punch in the nuts. They make this unnecessarily harder.
So you can probably imagine that it kind of sucks that the American Medical Association became a part of that YOU deciding that SPD is not a real thing. You can imagine how that makes this harder too.
Of course I know otherwise but his struggles are not even considered a REAL thing to the people with letters after their names who make the rules. So often, parents with children with SPD or sensory difficulty are accused of exaggerating symptoms or just not knowing enough about typical children to see that their kid is just being a kid. And let me tell you something...that kind of shit chaps my ass. There IS a diagnosis for parents who do that, in severe cases it's called Munchhausen by Proxy. In less severe cases it's just called asshole parenting.
I am not making my kid sick. I am not asshole parent. I just want my baby to have access to what he needs to be successful. Just like every other parent on the planet.
Right now when a parent (who lives day in and out with their precious child) reaches out for help because they are worried that their child may need therapies for sensory difficulties, they are often told that "Nah...SPD isn't a real thing. He's probably just <insert adhd/ocd/anxious/weird/just fine here> "
Well, you can see (can't you?), where that parent might feel like shit about that? Lost and desperate, even? Just imagine if a child with diabetes/adhd/allergies/developmental delays/ MS/ MD/etc was dismissed by the medical community? Can you imagine being told that it is just not an actual problem? And then maybe even going a step further to say that you are imagining or exaggerating things?
It makes me want to barf just thinking about it.
Thankfully that didn't happen to us.
I was so happy when the tests said, "Not Autism". "Happy" is probably not the right word. I might have been blissfully ridiculous, actually. But it didn't explain why his life was so hard for him. It took a developmental pediatrician to clue me in. He said to me "He most certainly has some form of Sensory Processing Disorder but for now I don't want to label him. Let's see how he does in the next few years before we put a label on it." Then the good doc hooked us up with therapy paths to consider and who to talk to and when. Advice and care that I am so grateful for because I had no idea at the time it is not the norm.
We have been so lucky to have experienced excellent care from schools, teachers, speech therapists, occupational therapists, our family doctor, developmental doctor and Head Start. We have been lucky enough not to NEED a diagnosis. Pants is getting all the help that he needs. He's doing great. And it has so much to do with his early intervention.
In short (ha!), Pants will be fine no matter what.
But what about the kids that are not? What about the kids who's symptoms are more severe? What about the parents that are desperate for help and do not have a doctor willing to talk about SPD? What about them?
If we know that our brains do 95% of their growing in the first 5 years of life and we know that the brain is more complicated than any of us will ever understand and we already know for certain that early intervention while the brain is growing that fast is ESSENTIAL for kids with autism, developmental delays et al... how can we not immediately take this seriously?
SPD is real, you guys. It's real. There may not be a medication for it but there sure as heck are working therapies. Lots of them. And families need access to them. My hope is that the AMA will seriously study this and finally validate what so many parents and children live each day.
All kids deserve to benefit from that early intervention not just the ones who's parents, like me, who happened to catch it early and then by chance picked the right doctor or school system or both. By recognizing SPD the AMA has the power to change the lives of so many kids who don't have a say in their own healthcare during that crucial birth to 5 yr-old window. The AMA can recognize SPD and open doors to therapies for families that can help them live more successful lives. I mean, doesn't that sound like a good idea? How is that not a good idea?