If you have a child with special needs, you know life can be complicated. The nature of those needs is irrelevant. It doesn't really matter if your child is physically challenged, has visual issues or is learning disabled. When a child—your child—has special needs, a different kind of parenting is required. Once that child enters into adolescence or adulthood, things get even more interesting.
Our son Michael was born with a rare metabolic disorder known as Cytachrome C Oxidase Deficiency. I remember meandering our way through a young allergist’s office one day when Michael was in the third grade. By this time, we already had a host of specialists we saw on a regular basis, so I was used to the look of perplexity that swept across a new doctor’s face when I offered up Michael’s diagnosis.
Michael was still using a walker at that time, but his gait was slow and labored. As we made our way toward the inner chamber, Dr. Kaufman repeatedly turned to stop and stare.
“Mrs. Spano, I hope you understand that I’m just an allergist,” he nervously stated. The fact that he mentioned this twice with special emphasis on the word just alerted me to the probability that this young doctor may not have the slightest idea how to treat a child with special needs.
Our new found allergist, so it seemed, was uncomfortable, and it was my job to put him at ease. We were, after all, in need of his expertise.
Once we reached Dr. Kaufman’s office, I carefully transferred Michael from his walker into a chair. We both sat and listened as the doctor began to go through the typical litany of questions ever careful not to look up or make eye contact with either Michael or myself.
The what-year-was-your-son-born types of now familiar questions were once again sprinkled with his repeated concerns about being just an allergist.
Next came a dramatic pause followed by the most important question of all. Dr. Kaufman cleared his throat and, after several seconds, the words spilled out.
“Mrs. Spano, what is your son’s primary diagnosis?” he asked.
Choosing my words ever so carefully, I replied.
“We are here, Doctor, because I believe Michael is struggling with some specific allergies that have absolutely nothing to do with his primary diagnosis. That being said, my son has a rare metabolic disorder known as Cytachrome C Oxidase Deficiency.”
Dr. Kaufman’s eyes dart back and forth between me and Michael in a momentary look of confusion. My suspicions are confirmed. I know—and he knows I know—-that he knows absolutely nothing about this rare disorder. I try a bit harder to put him at ease and mumble something about only five doctors in the entire country knowing anything about this deficiency.
Dr. Kaufman stares, pen in hand, and then, almost intuitively, Michael blurts out, “Wow! What a big word, I hope he can spell it!”
It was one of those precious moments I have never forgotten. Michael to the rescue. Stunned by my third grader’s response to what seemed, in his estimation, to be nothing more than a spelling challenge, I laughed out loud. The doctor laughed out loud. The tension was released, and we were quickly able to get onto the business at hand: allergies.
I learned that day that disability, in the minds of our young children, is often nothing more than a big word you need to master.
If you’re a parent of a child with special needs, however, you know things don’t always work out this easily. Some days, and we had plenty of those days, too, you’re told there’s nothing they can do to meet the needs of your child. On those days, you pack up and go home. And, you cry. You cry a lot.
For over 30 years, I've been interacting with parents in those messy places, and my friend Jeannene has convinced me that I should be blogging about some of the stuff I know. You see, I've ran the gamut on disability. From birth-to-death as they say. I don’t have all the answers, but over the next few months, I’m going to share some of what I've learned along this journey with Michael.
Yes, having a child with special needs is complicated. I find that the issues associated with our children haven’t changed much over the years. In some ways, we have better medical options and our children are living longer. In other ways, a whole new set of more complex challenges have surfaced.
I’d like to start a conversation around some of those challenges. I guess I’m hoping that my experience will strengthen the voices of those of you still out there fighting the good fight.
September 17, 2014 will mark the sixth year since our son Michael’s passing. In honor of his memory, we are launching the Michael Spano Foundation. I invite you to stay tuned to learn more about how we hope to use this Foundation to help others live out their dream of independence and choice.
And, if you’re having any specific issues with your child, please don’t hesitate to leave a question or comment here. I promise to do my best to respond as soon as possible.