I have debated over and over, going back and forth, silently in my head, whether or not I wanted to even discuss this out loud, let alone on a “permanent”, very public space. Not only would that mean that our closest, and not so closest, friends and families would have a more open window in to our lives, but it would also mean that I am raising my white flag; admitting defeat; accepting a new reality.
Or maybe I am all of these. Maybe I am, in fact, joyful. That no matter what, it is not “in my head”; I am not coddling; I am not a bad person. In fact, maybe I am a tad excited that I have new tools to understand the situation with a brighter light; a fresh view; a different perspective.
Before October 1st, I was just surviving. Purely existing and surviving.
But now, my exasperated and fragile rope, is starting to heal. The tension is in the beginning stages of relaxing. And the kinks are being massaged out.
But it is going to take some time. This is the new reality. Forever. Permanent.
So those emotions I am feeling? Every single one of them? Those are ok. Because if I didn’t feel hurt, angry, upset, afraid, then I wouldn’t be able to experience the happiness, the relief, the pride of relearning who my son is, in an entirely new light.
For 3 years and 4 months, I have been hanging on with a thread that so badly wanted to snap. Sure, the good days definitely outweighed, and outnumbered, the bad. By far. But the bad moments cloaked the good moments with a blanket of darkness. A heavy blanket made of black hole wool.
Am I coddling too much? Am I not disciplining enough? Am I saying it wrong? Am I a bad parent? Why does he always have epic meltdowns with me? And only me? Did I not coddle him enough? Maybe I co-slept too long with him? Maybe not long enough? Maybe I am not present with my children enough? Maybe present too much? Do I not read to him enough? Or do I not go thru a good enough night time routine with him? It has to be all in my head right? He only acts extreme with me so maybe it is all my fault, right? He is so quirky because I didn’t stop him from doing / taking x, y, z, so again, it all comes back to me. Right?
And with that one word – quirky – is what has completely changed our world upside down and completely backwards.
What started as a curiosity to see if a friend’s step son just had sensory issues instead of full blown autism that he had been “officially” diagnosed with for the past 9 years, has ended up being a life changing experience.
We sat at work, printed out an 8 or so page Sensory Processing Disorder (SPD) questionnare. 1 copy for her. And 1 for me. Just because. Line after line, another check mark. On mine, not hers. Some didn’t apply. But most did.
And then I sat back. And then I looked at each numbered dot. And I connected those lines. The next few minutes, they were a blur. I felt every raw emotion I could, and then I shut it down. Closed.
I folded up the questionnaire, and I stashed it away. In my purse. In my car. And it stayed there. For 2 days, then 4 days, 5, 7. And then on the 8th day, I had a moment. And I looked at each line. And I wrote down each corresponding behavior that my son exhibited. That he showed. That made him, well, him. And then I started to cry. This was him. For the past 18 months. All of these behaviors, why had I not noticed it earlier? Pushed it further? Trusted my gut.
I had brought it up once, briefly, to his speech therapist that saw him once a month from age 2 to age 3. At the time, he didn’t exhibit too many signs. He hadn’t quite developed the personality that he has now. At the time, SPD was in the back of our brains, but we were not on high alert. The therapist, whom we loved, seen nothing like him. If anything, he was completely opposite on the SPD spectrum.
So fast forward. On day 8, fate occurred. On this day, I had to take Mr. Man to his early intervention preschool. Something I don’t do because I work 2 jobs. So in the past 4 months of my son attending this school, I have spoken with the teacher less than the fingers on one hand.
I don’t know what came over me, or even what came out of my mouth. I saw his teacher. I asked if we could set up a meeting in the future so that we could discuss some potential issues I was noticing with Mr. Man. I knew she had to go back to class. So I just wanted to keep it short and sweet. What I assumed would have taken only 30 seconds, turned in 15 minutes.
She believed me. She was on my side. She was my new ally. A new advocate. For me. For my son.
That 15 minute conversation, was needed. I didn’t know what it meant in the ensuing hours. But then it hit. Like a semi truck.
I am a researcher. A compiler. A follower. An understander. A person that craves true stories. A mother that finds her son in each of those true stories. A realizer. That I am not the only one that has a delayed big picture view. That my son is not the only quirky one.
My son’s quirks were never just cute quirks. They were a signal to us that something deeper was going on. My pure exhaustion, hanging onto survival, merely existing, those were all in vain. I didn’t connect fast enough. I let people judge me, my son, our family.
But it is going to be ok. Because now we know. Now we know that the struggle will be there. It is real. And there is a reason. But more importantly, there is hope. There has always been hope. We just need to look at it in a different way. A new light. A fresh perspective.
Getting there. Slowly approaching the landing strip.
There are therapies. There are tools. There are methods we can try, toys we can buy, rooms we can put together.
But until we can get a referral and be seen and get an official diagnosis, we are in this holding pattern.
Depression v. 2.0.
There is so much that can be done. We just need the appropriate training. There are so many personal stories and methods. But each SPD child is a unique snowflake. There are toys and tools. But they are expensive and without proper training, we would be metaphorically throwing money into a fire pit and dowsing it with gasoline. The tools could work and our money would not be wasted in vain. Or the tools wouldn’t work and our money would be just ash, worthless and space consuming.
And then the biggest potential reality that I am in fear of. I know my son. I know his quirks. I am learning what is setting him off. I am understanding what keeps him calm. But what if the specialists that we end up seeing, don’t see it the same way. What if they can’t get past who he is 90% of the time in public? Will they equate his constant need for movement as a typical 3yr old? Or will they think his constant need to be touching his mommy, is a side effect of just being highly attached to me? What if, it all truly is in my head.
Acceptance v. 2.0.
And then I hold on to what his early intervention teacher told me. That he keeps it all bottled up, behaves nicely and in the appropriate manner, when he is not comfortable. That when he sees me, I am his comforter.
I am his anchor.
I will not go anywhere. He can climb over me. Throw insane meltdowns. And I will still be there. When he feels like he is drifting away, he knows he will not get far from me. When he feels like he is floating too high, I will bring him back down.
And for that, I am ok. For my new role, I accept. For our new future, I am hopeful. Because I am his anchor. And I will fight and dig my feet in as deep and rigidly as I need to, in order to get what we need. What he needs.
I am not sure. I pray to all spirits, that my son, he will be ok. He is healthy. His brain may be wired differently. But his heart is whole. And the severity could be much worse. And to that, I am thankful.
Now, it is time to repair my rope and begin anew. Researching techniques, learning new methods, to make sure that he thrives.
And this future, it looks much brighter. The black hole wool blanket, is turning into a shade of milky way, a galaxy of bright stars. The darkness is still there. But the light, is a new anchor in the darkness.
My daughter? That is another story for another day. Once we can unravel the quirky mystery that is her brother, only then will I be able to apply my new knowledge, new armor, new perspective, to her.
I am his anchor. I will be hers as well.