By Christine Moody, formerly with Texas and Indiana Hands & Voices
I am an “experienced” mom (I won’t use the word old) and I hope that I can impart some valuable wisdom through this new series of articles for parents of deaf/hard of hearing “plus” children. My son, Michael, is 18 years old now. He was born before newborn hearing screening and before most of the country had heard of the first cochlear implants for children. He is thankfully a product of extensive early intervention, and his experiences over time redirected the path of my life, not just personally, but professionally. Throughout his life he has had and will continue to have many challenges doing things that are very easy for most people. It is only in the last year or so that I have heard the term “deaf/hard of hearing plus”. Over the years, it seems that people always struggle with ways to describe a child or person with multiple challenges. In our politically-correct society, we strive to find the least offensive term to describe someone who has many challenges. Are they disabled or multiply handicapped or do they have special needs? We don’t want our kids to think that we view them in a negative manner, and so it seems we have a new term to reflect a more positive outlook: “plus”. The truth is that it doesn’t matter what the label is; each family defines their child in terms with which they are most comfortable. The other truth is that there is value in being as positive in one’s outlook as possible, so terms like “plus” can go a long way to encouraging that positive outlook.
No matter what, the people we encounter will somehow determine that our child is not normal. There’s a word for you! What does that mean? Every once in a while, I reflect back on the first 15 hours of my son’s life – okay, tears are in my eyes now – the only time when he was “normal”. I find myself wishing that I had spent more time with him, cherishing those moments, instead of letting him be in the hospital nursery while I rested. I find myself wishing that I had imprinted that simple joy on my heart more indelibly, the joy of normalcy before my son’s life, and our world, changed forever. Everyone’s experiences are different, but Michael’s challenges seemed to drop from the sky one at a time over many years. Just as we dealt with one issue, a new problem emerged. It all began with a seizure 15 hours after birth and ended in a pretty long list that rolled out over the years. Here’s the list: seizure disorder, a hole in his heart that has since healed, cytomegalovirus (CMV), cerebral palsy (CP), bilateral profound sensory neural hearing loss, attention deficit disorder (ADD), scoliosis, and pervasive developmental disorder not otherwise specified (PDD-NOS) which is an autism spectrum disorder. I know that seems like a lot, but here’s the bottom line: he is a healthy, happy, social, Deaf young man who loves sports, playing video games (who doesn’t?), and enjoys high school. He does well in school (except for English), manages the Varsity Basketball Team, and runs track with a brace on his left leg. It turns out that his greatest deficits are that he cannot successfully use his left hand, and he struggles with his executive functioning in terms of abstract concepts and problem-solving, as well as with social skills.
So, after 18 years, Michael has overcome many obstacles, but still struggles with some significant deficits. I’ve heard people say “This is your new normal.” I’m not sure what that means either. I think it just means that life is what it is. That’s why I don’t allow myself to look back to that first 15 hours very often. I live today, in the struggles and successes of the moment, and look to the future, always setting high expectations. I push, pull, pray, and will my child to reach those expectations…and I never, ever, give up.
Yes, my son is d/hh plus and you can see his “plus”. However, I believe that the whole world is “plus”. Everyone has struggles and obstacles that we might not be able to see, but which are very real to them. Do Michael’s challenges require a lot of work and effort? Absolutely, and quite honestly, after 18 years, I am exhausted. Truthfully, “plus” means more work and more challenges and more frustrations, but I like that, as a word, it also holds that positive implication. People tell me that Michael would not be where he is today if he had not had a mother who set such high expectations and worked so hard to help him attain them. However, I have a difficult time seeing that, because my sights are always set on the next milestone. That’s what “plus” really means – moving in a positive direction.