Monday, January 13, 2014

Was There Something Everyone Missed?

Among all the "what ifs" and "should have beens" that have swirled around me for the last four weeks, a new one was added to the mix last Tuesday.

After four years of believing our little E1 was just a bit more moody and sensitive than we expected, perhaps spoiled, perhaps just immature, a trip to Winston to see a specialist resulted in a diagnosis of Sensory Processing Disorder and a plan to begin therapy.

It also opened a whole new door of "what ifs," especially when a friend who had lost a family member to drugs told me he had struggled with SPD, as it is called for short, and been unable to cope or find a successful treatment or therapy regime; especially after my daughter mentioned there was often a genetic link, if not to a parent then to a close family member.

What if all the many things we always thought of as "just Ethan" were really symptoms of a disorder we had never heard of that could have been treated? What if when he said the drugs silenced the noise around him so he could concentrate, he really wasn't talking from purely an addict's perspective? What if Ethan had been born 15 or 20 years later when the Internet gave a concerned parent the research tools to try to find out what might be wrong with their child?

Among the many what ifs, this is one I couldn't change. But it is one I have to ponder.

We might never have found a diagnosis for E1's occasionally odd behavior, had it not been for the Internet and a mother determined to know. Although she was slow to talk, she was within the realm of normal. Although she forces her world to follow a schedule, her mother was a firm believer that being on a schedule was good and doesn't handle disruption too well herself. Although she is prone to meltdowns, she's only 4 and we don't really expect her to be in total control of her emotions.

Most of the world only sees E1 as an outgoing, bubbly little girl because most of the time we, meaning her parents and I as her secondary caregiver, have learned to manage her. Her physician said she was extremely bright. Her Sunday school and Awana teachers are delighted with her intelligence and eagerness to learn. No one outside the inner circle suspected there was anything different about her.

But her parents and I saw a little girl sometimes reduced to hysterics by the temperature of her food or her inability to do something she thought she should master. We saw a little girl who derailed from her schedule by an overnight trip or an extended family outing might take days to get back to herself. We saw a little girl who sometimes said "I can't" when asked to do a simple task, and who was consumed by her inability to do so.

Her mother was determined to know if we were doing something wrong, or should be doing something differently. If it wasn't us, then she wanted to know what it might be, especially if it were something that needed to be treated. Occasionally we bounced ideas off one another, but nothing in the spectrum of emotional disorders we had heard of seemed to fit. Then while searching the internet she found SPD and began reading articles by adults who have the disorder left untreated, she began looking at checklists and finding that E1's behavior ticked off a lot of yes answers.

Although I don't think anyone else was convinced, she called her pediatrician for a referral for SPD testing. In the meantime, Ethan passed away and our concerns for E1 were both secondary and more meaningful. In that, I meant we sort of forgot that the evaluation was looming, but were determined that if there were anything to be done for her it would be done because some part of me will always worry that there was a diagnosis no one made for my son.

I cannot look at E1 and say that Ethan was like her as a child. Of course, his preschool days were nearly 20 years ago, but they are characterized in my memory by an easy going little boy who never liked to be alone, not the demanding preschooler that E1 has become. His schedule was flexible, he could sleep anywhere. If anything, one would say he was her polar opposite.

On the other hand SPD is a condition in which sensory information is incorrectly organized or misinterpreted by the brain, so it can have different manifestations. From the present, I cannot go back and evaluate a checklist to find out if his behavior might have also resulted in a lot of affirmative answers, because I simply cannot remember.

Yet there is a similarity I have noticed, a hesitation in how to respond sometimes to a new situation and sometimes to something that you would think they would have been familiar with. I can see it in their smiles, captured in posed photographs of two very different small children, who both look a little uneasy and uncertain. It's a similarity that goes beyond curls and blue eyes, beyond the tiny pearls of baby teeth and one that had, even before Ethan's death, occasionally sent an icicle of dread through my veins. Each time I glimpsed that similarity, I was filled with determination to do anything to save E1 from Ethan's pain, even before his life ended.

Now we have a diagnosis and a path to follow that will in all likelihood lead to a happier future. And I'm wondering if the same path might have saved my son, had I, his doctors, his school counselors, or even the counselors he saw later, been more familiar with this disorder. I wonder how things might have changed if by the time we were concerned about him, he had not learned to mask his differences, fake normal and bullshit his way through any psychological testing. I wonder about the little boy who didn't fit in and had only a few close friends and how we accepted that was just Ethan, when perhaps there was more going on. Perhaps this wasn't the disorder that drove Ethan, but what if it was and it was just a matter of no one knowing and no way to find out. Even today's literature says SPD is often misdiagnosed, although it occurs in somewhere between 1 in 20 and 1 in six children.

Thanks to the internet, today's parents aren't limited to the knowledge of their peers and doctors or even what they can find in a library. They have the whole world at their fingertips and it requires only time and determination to pursue a solution when something doesn't seem right. I didn't have those tools and I won't blame myself for what we may have missed in our ignorance.

I will, however, urge today's parents and grandparents to be open to the possibility that your child isn't a bad kid or just a different kid, that sometimes there is something else going on. If you feel like they're having trouble coping or fitting in, look for answers and keep looking until you find a definitive yes or no. Maybe they are just unique and there's nothing wrong with that, but if they don't like who they are or they aren't comfortable in the world we as we know it, it could be that by looking for an answer you wind up saving a life.

I cannot go back and change the past, but you may be able to change the future.


  1. This must have been a difficult post to write. Thank you for sharing your story! I'm glad your granddaughter is getting the help she needs.

    Jennifer @ The Sensory Spectrum

  2. "I cannot go back and change the past, but you may be able to change the future."

    Thank you for your courage, your selflessness, and for compassion for yourself...