getting to the heart of the issue

It seems only fitting that I would write this as I sit and wait during Pepper’s weekly occupational therapy session. This post is about how we got here. To this place. In this office. To this therapy. To the realization of where we are.

Pepper is six and half years old. She has been diagnosed with “sensory processing disorder”. It’s a tag. It’s one of the many things she “is”, but it is only a label she wears. It does not define her or describe her. But, it does most certainly help explain her.

Getting here was a long process. Years upon years. And, we are here, but we aren’t there yet. We aren’t at the final place with all the answers, but we are in the process and doing the work.

Pepper is our firstborn. Thor and I learned to be parents as she grew up. It was the steepest of learning curves with ever changing switchbacks and up down hills. We struggled in twos. It appeared that the adage of “terrible twos” was true. But, then it wasn’t. Research from library books and other parents, told me that the threes were actually worse.

The tantrums were becoming longer. More violent. More out of control. Harder for Pepper to come out of and more destructive. These were the struggles, but there was so much joy. So. much. joy. She was a light in our lives. She was radiant energy. She was an artist of unbelievable ability. She was riotously funny and quick witted. She was a never ending spiral of complicated questions and fascinating reasoning.

She was our first love.

She was a horse. Off the charts for height and built with the lean, muscular frame of swimmer. She was solid and ate a rainbow medley of foods. She was without a doubt healthy.

As the baby, V, grew in my belly, we came to the realization that we were not prepared. The nursery’s walls had been painted. The onesies washed and folded. But, there weren’t enough hands to hold a baby and protect Pepper from her own fits. There wouldn’t be enough hours in the sleepless nights to recharge the battery that was so fully drained at the end of the day.

So, we planned.

We started “play therapy” and moved forward with weekly sessions. Things didn’t get any better. There was no change. We stayed the course, but so did the behavior. The only hint of help was that professionals kept telling us “this isn’t normal behavior”.

As V grew older, we began to have another “real life” subject for comparison. Another 24/7 case study. It was an unintentional comparison, but it was a natural observation.

The differences became clear.

It was a matter of intensity.

The tantrums weren’t epic. They were manageable. They weren’t scary. They weren’t entire afternoon affairs.

The body movement was topsy turvy, but it wasn’t incessantly out of control. It didn’t ricochet off household surfaces like a pachinko ball.

The attention span was longer. Literally longer for a one-year-old than for a four-year-old.

The put-everything-your-mouth stage ended at an appropriate age. It was obvious it wasn’t going to progress into the preschool years.

Up until this point, we had always considered our struggles a matter of parenting. Perhaps it was rooted in my naievete and pompous pre-being-a-parent attitude of bad kids come from bad parents. Or, it could have been that there was a child in front of me who was to all appearances and statistics, remarkably healthy. It was likely a combination of both.

So many of Pepper’s struggles were manifested as behavior issues. They were the type of behaviors that should have responded to punishment, discipline, natural consequences or any combination thereof. And, the dialogue had been on repeat and it seemed logical that eventually it would sink-in. Unless we weren’t speaking the right language and needed to change it. Again, it came back to us.

The birth of V changed that. A wholly different child and magical and awesome in all her own unique ways. The parent part of the family equation remained constant with similar parenting methods, but there was clearly a difference in the resulting behaviors of the children.

So, what variable were we missing?

It wasn’t until a playdate with a newly found friend, a true serendipitous meeting. This friend happened to have “child psychology” and “early childhood development expert” on her resume. A light in this dark tunnel started to shine brighter. I was lamenting our struggles and Pepper was playing the part perfectly – being authentic to herself and giving visual evidence of the observations I was noting. My friend asked if I had ever looked into sensory issues. I immediately assumed she was referring to the five well-known senses (taste, touch, hearing, seeing and smelling) and assured her that Pepper had passed those tests with flying colors (remember that healthy as a horse comment above?).

The next words she said hit me. Hit me in a way that made me plug my right ear so tight in an extreme effort to block out the harsh reality of what she was saying. But also in a way that made my left ear tell me I had to do more research and figure out why she could possibly be suggesting this.

Autism spectrum.

A word and diagnosis so loaded and so controversial, it gave me the chills. It wasn’t just the word, but the idea that this might mean it wasn’t “us”. I had been squarely planted in the realm that this was a parenting issue. Nothing else. And, more tragically, it meant that it might be her. She might be the reason. The reason for the struggles and our consistent head banging against brick walls. A child. Wholly loved with unimaginable abundance. But, perhaps parented in a way that wasn’t the best for her because there was a huge piece of her picture missing. The canvas was there, but a whole chunk hadn’t been slathered with paint yet.

Through deep reflection, painfully raw anger and blinding bewilderment, I learned to rely on the love. It was and has always been there. We always parented with love and adoration for this beautiful individual we created. Always.

Once I began to forgive myself for learning as we went, I started move forward. I tiptoed with the most delicate of steps into the arena of research. I dove a little deeper and found more information. The garishly blinking sign of AUTISM continued to blast itself into my psyche, but I was finding out there was a lot more to it. To this possible explanation.

The research yielded one lightbulb moment after another. One more question of “Does your child have this strangely abnormal behavior that makes no rational sense?” that Thor and I answered with a manically emphatic head-nodding.

Through each baby step and each bit of information we absorb, we gain another tool to slip into and rely on from our parenting belt.

Our patience holds strong. Our understanding grows. Knowledge is power and the awareness we have gained is tremendous. There has been justification for methods we found through trial and error and that we have learned to rely on because they were strangely effective.

We have been doing it right all along.

This dear child was fiercely and awesomely made. She is a gift. Our gift. This is the time and this is the place. We are the right parents and the right family for this right little girl.

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One thought on “getting to the heart of the issue

  1. Oh, yes, the right parents and the right time and place. The details of the needs are always changing just a bit, too, so you learn to dance.
    “The right information in the right place just changes your life.” –Stewart Brand at Hackers’ Conference, 1984.

    Like

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