D/HH Plus Column:
“My husband and I have agreed that until someone can PROVE that my son will not accomplish something, they can keep negative thoughts to themselves.”
In my role as Coordinator for MN Hands & Voices, I have had the honor of meeting a lot of parents who share the many joys and challenges of raising a child who is deaf or hard of hearing. Those interactions are precious to me, because by listening to each story, I learn something important. And I believe that each lesson learned makes me a better parent and a better advocate for other parents.
I have to confess, however, that when I connect with the parent of child who is deaf or hard of hearing and has some medical concerns as well, I personally benefit even more. My own son was identified with cerebral palsy before we even knew to look for hearing loss. We were in the process of accepting this when we discovered he was profoundly deaf. Some four years later, it would be even harder to accept he had ADHD. I was deep in denial and quite frankly, had grown tired of more new appointments, new articles to read, and new therapies to explore. Would this be the end or would there be more?
Candace and her son Luke at Devil’s Lake
So, when I meet a new family who is starting their journey with hearing loss, AND the family is grappling with autism, vision loss, Down Syndrome, cranial-facial differences or some diagnosis...I feel a little stronger bond. I may not face these same challenges, but I know what it’s like to wake up on any given day and wonder which issue will be the priority today?! Will I have the energy to tackle yet something else new? Talking to other parents reminds me I can do it. I have done it. I am not alone in this effort and it will be okay. I may have to modify how I imagined our lives, but don’t we all? “Life is what happens while you’re making other plans?” as the saying goes.
So, in our community within a community, despite our differences, I think we share a lot in common. And I think our needs are similar. First, we need our kids to be included, just like anyone else. The worst thing someone could do to is to draw a line between my child and a child who is “just” deaf or “just” hard of hearing. We live the difference, but there is no need to remind us of it. We desperately want to belong to a larger group and most certainly want our children to feel part of one. From time to time, I’ve witnessed someone purposely exclude him and this hurt deeply. To be shunned from by others who are deaf or hard of hearing is beyond my comprehension. Thank goodness these experiences are few. And sure, I’ve had moments when the differences seem huge, felt jealous and thought, “Must be nice to have a child who is just deaf.” At these times, I try to recall a time when my son showed amazing courage. Like years ago, he was the only one of his cousins to make it to the top of a climbing wall. The rest of the group had become scared and one by one, were lowered to the ground. My son just kept going, hands and feet clenched tight from cerebral palsy, but he didn’t give up. When he reached the top, rang the bell and a roar went up in the room, I realized everyone had stopped to watch this incredible kid conquer his challenges. Tears of pride rolled down my face!
Second, we need patience. I have heard some professionals express frustration with families who have children who are deaf and hard of hearing “plus” when they are not giving the hearing loss enough priority. Believe me. I want to make sure all kids have access to language and feel very strongly that our kids IN PARTICULAR, need language. However, a family may need some help to prioritize hearing loss. I would ask for their patience and understanding with us as we wrap our brains around all the many issues we face and catch up to the rest of the world that wants us to move faster. The audiologist, for example, is focused on hearing loss. He or she may not realize that the "front burner issue" for the family is behavioral issues related to PDD. So, before we are judged, maybe it's best to both listen for the front burner issues, and to ask questions. Maybe by providing more information to the family about how working on language may help with the behavioral issues will bring us around. When there are so many issues and decisions to navigate, we can become completely overwhelmed. Denial can be a necessary place to retreat while we muster the energy and strength to eventually cope head on with the problems we face. Help us reach acceptance and our “new normal” with gentle guiding patience and lots of accurate information.
Third and most importantly, we demand expectations of our children be high. I have long ago stopped worrying about when my son reaches milestones. Those baby books where parents log “baby’s first word”, “baby’s first step” were abandoned very quickly. I had new milestones to celebrate. No store-bought book seemed to have an entry for: “Date Baby Who Should Be Walking ‘Butt-Scooted’ Across Floor to use Both Hands (“high tone hand” included!) To Rip Every Shoe Insert in Half: (insert date accomplished).” It was a banner day at our house! At the same time, we need to be surrounded by professionals who believe our children will achieve their goals. We are very capable of being realistic, but it is our job as parents to believe in our kids. My husband and I have agreed that until someone can PROVE that my son will not accomplish something, they can keep negative thoughts to themselves. And so far, he’s met every challenge. Never walk? Sorry! Never have intelligible speech? Sorry! Never be on grade level? Sorry! Trust me, I have plenty to still worry about, but from the doom and gloom we envisioned, this boy has come so far! Parents are programed to push their children to their potential. Please respect and accept that.
In reading these words, if anything has struck a chord…if you are out there in the trenches, raising these amazing kids and wish to connect with other families with children who are deaf or hard of hearing plus, let me know. I am interested in exploring a way for our Hands & Voices community within a community to discuss issues that are important to us. I invite you to contact me. Looking forward to sharing the journey…
The Communicator welcomes parents and professionals to submit articles on any aspect of D/HH Plus and help us unwrap the gift. Please contact column editor Candace Lindow-Davies at firstname.lastname@example.org or Sara Kennedy at email@example.com.