"I think there's something different about this one", I told Jen within a few hours of Ben's birth.
Circumstances of the arrival of all four of our children dictated that I met each of them first. I held each of our three sons within seconds of their arrival and held our daughter at the moment she was united with her forever family. I will forever cherish those moments with each of my children.
And... when I first held Benny, I knew. You hear a lot about mother's intuition, but what about father's intuition?
I am, for the most part, a realist. Like most realists, I am often mistaken for a pessimist. If you don't understand realists... well, they say a picture is worth a thousand words:
So, it was not surprising that my realist father's intuition was dismissed. For the first months of his life, in fact, it was dismissed. Ben looked healthy and typical, so I, too, often dismissed the thought that something was amiss. Yet, it never completely left me. It was a niggling little uneasiness that often hovered near.
When he was months old, it started to become apparent to us that Benny was developmentally starting to fall behind the milestones of his age peers, and we began to discuss this with his pediatrician. At age two, he was plugged into early intervention programs and therapies two days per week through our county school for developmental delay, and shortly thereafter started seeing a neuro-developmental specialist. Still, there was not great concern... many kids fall a bit behind and then catch up with their peers.
His realist Dad cheered him on and hoped that they were right... that he would catch up. Yet, realists are not afraid to consider the "what ifs", and the niggling uneasiness often returned. What if he doesn't catch up? I wanted him to. And, I wished him to. And, I cheered him to that goal. But, often, deep inside, I felt there was more to Benny than just a bit of lagging behind his peers. What if I was right at birth, and there really is "something different about this one"?
I felt that most people, again, viewed even considering that possibility as pessimism. As though somehow, by my very considering that Ben could be an atypical child, I would bring the fate to bear upon him.
So, therapies continued. Gains were made. Attaboy, Benny!
At age three, Ben started preschool full-time at the same county school. Despite developmental progress, his age peers continued to outpace him and widen the gap. His neuro-developmental specialist advised to hold the course until and if he reached the point where his developmental age was half of his chronological age. In his fourth year, that occurred, and the approach was adjusted to begin to explore the possibility of a diagnosable explanation for Ben's delays. In fact, it was becoming more and more obvious that there was probably something more going on with Benny than we all first hoped.
Early this summer, Ben was referred to a genetic specialist, who ordered a battery of genetic array testing. Upon observing him, she initially threw out a few possibilities, and we immediately began internet
diagnosis research while we waited for the results to come back. One of the possibilities she mentioned really seemed to fit Ben, and although we hoped the test would confirm otherwise, we were fairly convinced that the results would be positive for this particular genetic syndrome.
When we learned of the results, to our slight surprise, he was negative for that syndrome.
But... he was diagnosed with another genetic disorder that, prior to that day, the name of which was completely unknown to us: Isodicentric Chromosome 15 Duplication, also known as Idic 15.
Genetically, the cells that make up a typical human carry 46 chromosomes... 23 from Dad and 23 from Mom. Individuals with Idic 15 have 47 chromosomes, because a portion of Mom's 15th chromosome gets duplicated. Our creator designed us very specifically to function with 46 chromosomes, so an extra one really throws a kink in the works.
Idic 15 is considered a "hidden disability". Because it has almost no outward physical markers, when most people see a meltdown in the aisle of Wal-Mart, they just see a bratty kid with ineffective parents. I have learned to be much more graceful to other parents in public. Idic 15 has taught me that things are definitely not always what they appear to be. The looks and reactions (whether real or imagined) of others, when public scenes occur, used to bother me a lot more than they do now. I used to question whether I truly was an ineffective parent with a bratty kid or whether there was truly "something different about this one". I still don't like making public scenes, I don't just blow behavior issues off and chalk them up to Idic 15 and there are still some things we refrain from participating in because of Idic 15; but, I know they are going to happen and I know they are happening for a legitimate reason, so we are now more free as a family to just be ourselves, and there is a certain amount of disturbance that you are just going to have to endure!
Because of Idic 15, my son can potentially be affected by a list of related difficulties (and, he is touched, to some degree, by nearly all of these):
- Hypotonia (overall weakness, "floppiness" and tiring easily)
- Gross and fine motor delays
- Cognitive delays
- Learning disabilities
- Intellectual disabilities
- Autism Spectrum Disorders
- Speech and language delays
- Sensory Processing Disorders
- Behavior and social challenges
- Seizure disorders/Epilepsy
- Attention Deficit Hyperactive Disorder (ADHD)
- Anxiety Disorders
Yeah... take
THAT Ms. Perfect-Parent giving me the stink-eye because my son is melting down in the aisle of Wal-Mart! How many of those issues have you personally had to work through every single day of your life like my son has?
My son is a hero.
He doesn't know that life is not supposed to be this hard... this confusing... this difficult to process. This is all he knows, and every day he gets up to face the world with bravery, although some of it is scary to him, some of it does not make sense to him and some of it causes him anxiety. He does the best he can with the hand that is dealt him, and in the process, he brings smiles and laughter to most with which he crosses paths.
Parenting is hard enough.
Parenting a child with special needs is even harder.
I want to give him a big squeeze and hug it all away, but, alas, Idic 15 is hardwired into his genetics and it is there for life. Somehow, I knew it was there, but I admit, I have only just begun to explore what it means. What does the future hold for Benny? Or, for us, his parents and siblings?
Well, that I
don't know.
But, I know that I love this little guy!
Benny, you are my favorite Benny in the whole world. I'm lucky to be your Dad, Little Man!
