Here’s something we don’t talk much about, but has such a great impact on our daily lives.
A little backstory first. We aren’t ones to watch much TV, but we will occasionally binge watch shows on Netflix. This takes us back to roughly 2 years ago when we discovered arguably one of the greatest shows ever made, Parenthood.
Now this show wasn’t doing anything radical, but it was pushing boundaries and approaching topics that have rarely been discussed. A major aspect of the show is how one family handles their son being diagnosed with Asperger’s. It was a slow introduction into the topic. The family begins noticing little “quirks” about their son, that he is a little “different”.
And while we are watching this show we notice these similarities between our own son. Just recently hitting his two year birthday we were inundated with “he’s just a boy”, “it’s just terrible-twos”, “it’s just a phase”. Granted, we fell into this trap for awhile. We had two girls, he was the first boy out of all the grand kids. Maybe it was just a stage.
But as we continued to watch this show, the similarities just kept jumping out at us. They weren’t subtle clues and hints, they were bold signs smacking us in the face.
And there’s one part of this show, in the very first episode, that hits me every, single, time and will bring me to tears.
The dad is confronted by his own father, and he finally just breaks.
“Dad, there’s something wrong with my son.”
And that was it. No, my son isn’t just in a phase. He isn’t like all the other kids. There is something “wrong” with my son.
And the naysayers told us we were being ridiculous. I remember vividly sitting at my own dad’s house trying to have a conversation with him about what was going on, and he just wasn’t hearing it. And those words literally came out of my own mouth. “There is SOMETHING wrong with my son.”
So we did what any parent would do. We got him tested, we went and saw therapists, we spoke to our doctors.
We were sure that he had some form of autism. I remember the day we were finally put on the right path and the pieces literally started to fall into place.
We were sitting at an autism specialist’s office in November. She wanted to observe him and spoke very little to any of us. A few questions to Bud to get some interaction. After awhile she finally looks up at us and says “he definitely does not have autism, what made you think that he does?”.
And the way she talked to us she made us feel like we were being stupid. Like we were making the whole thing up, that we were looking for something to be wrong with him.
So we told her everything that was going on. How he would break down from going outside. How he had to cover his face with a blanket while driving in the car because the sun hurt his eyes, even if it was in the heart of summer and 90+ degrees outside. How certain sounds, textures, smells would affect him.
And then she saw it. As we were talking to her and she was still observing he was trying to walk and he kept misjudging his steps. And she started to put all the pieces together herself. And it hit her.
Sensory Processing Disorder
Sensory Processing Disorder (SPD), a condition that includes people who are overly sensitive to what they feel and see and hear, but also those who are under-sensitive, and still others who have trouble integrating information from multiple senses at once. SPD is not an official diagnosis. It isn’t included in the newest edition of the “Diagnostic and Statistical Manual of Mental Disorders” (DSM-5). Children with the clinical label SPD also have a lot in common with children diagnosed with autism.
We weren’t crazy after all.
And everything started to make sense from that point on. This was related to that. It was a reaction. A domino effect.
Bud spent a year in therapy after that point with a therapist who would come to the house and work with him on his needs. He was very non-verbal, had a lot of tactile problems, and his proprioception was way off. And his progress went through the roof. By the time he was three he began to self-regulate. He knew his triggers, he knew what to do to calm himself. And so did we.
Our 2-year old was figuring out the world and how he could fit it into his needs. So we changed our lives to match his needs. He will have this his entire life, so we need to do our part, as a family, to support him.
And two years later he is extremely high functioning. Most days you won’t even know there’s something just a little different than the rest of the kids.
But the SPD never goes away. And it will rear its’ ugly little head whenever it feels like it. Doesn’t matter the location, doesn’t matter the time, doesn’t matter who’s around.
And that’s when the meltdowns happen. Just a brief overview, a meltdown is not the same as a tantrum. A tantrum is generally controllable by the child themselves. A meltdown is complete sensory overload. When the body is looking for escape.
Bud has been doing really well this past year. A few meltdowns and sensory overloads here and there, but nothing too extreme. But I think the past few weeks, with our schedules being so chaotic, he has regressed quite a bit. His sleeping habits have gone back to what they were before. Up all night, refusal to sleep, getting back into bed with us. His potty training is taking a step in the wrong direction. His attitude has been something to be desired ..
And on Saturday he had enough. The five of us were making our way through Target doing some fall decoration shopping. Bud was pointing at everything he could see and kept telling us over and over that he wanted something. No. That’s not how we work. Fine, he calms down. But the more we walked, the more he saw, the more sights, the more sounds, the more lights, the more colors, the more people. His body was done. Let the meltdown commence.
And it was an epic meltdown. The ear-splitting scream that ensued made us want to grab the cart and run out of the store. So we headed for the exit, all while dealing with the stares and the comments under the breath.
You don’t KNOW the situation. DON’T JUDGE.
The people in the store see this kid just being a “brat”, not getting his way. We are the parents who don’t know how to “handle” our children.
You don’t know what not only WE are going through, but what HE is going through. You don’t know about the 20 minute drive home where was still in meltdown mode. Or how he finally, eventually, just crashed (usually how he ends the meltdowns).
But it was just a fun little reminder that yes, even though he has his good days, he will always have SPD.
So I would say I’m sorry to the people at Target who had to experience his meltdown on Saturday, but I would be lying. I’m not sorry. This is our life. We are doing absolutely everything we can for our children to give them a great life. We are good parents. Do not judge us on a moment of sensory overload.
When I look at the things my son goes through I see a lot of similarities between his youngest older sister, and also myself directly. I have a lot of sensory issues that I never really put together until my son was diagnosed. I have a lot of the same “quirks”. I just grew up with it and learned to self-regulate on my own. It really helps with my patience during times like Saturday. Because I have a sense of what he is going through. His mind and his body is screaming on the inside, “enough is enough!”
But it’s a new day. I took my son to daycare today and give his a big squeeze (his favorite, it’s a sensory thing) before walking in the door. Today is a new day, today is a good day for him. Today he is in control. But I know that some point in the future he won’t be again. I need to remember that he literally processes the world differently than the rest of us. He actually stops and smells the roses, and soaks up all the little things we take for granted, because to him they are big things.
So we all need to look at the world from his eyes, at least for a moment. Process things a little different than you normally would. Don’t rush through the day, savor the moment.
And live life a little differently.