Life Lessons from John: Verbal Apraxia
My son John is a sweet eight year old boy with Verbal Apraxia. He has been receiving therapy since he was two years old. He is now in first grade in an inclusive classroom in Lexington, Massachusetts where he receives daily speech therapy. As a mother, I researched John’s symptoms and concluded long before his diagnosis that he was dealing with Verbal Apraxia. His distinctive speech often sounds as though he has an accent. He struggles on a daily basis to communicate. When he was younger he used gestures, toys and explanations to tell his stories. Our family was in an endless game of charades as we tried to put the pieces of his stories together. There were many “Aha!” moments when we finally figured out his words. He became great at describing things and telling stories. In the safe confines of our family, we understand “John-speak”. Here, he is allowed to focus on communication rather than his speech. He is accepted and understood. In his classroom, the children have also become very adept at interpreting his speech. When he is outside the safe-haven of home and his classroom, his challenges become more apparent.
Justin MacNeil "Something to Say" original song written for CASANA and our kids
John has two sisters. Meaghan is sixteen and Clara is six. John’s father and I divorced four years ago. We struggle financially and I am sometimes overwhelmed by the daily responsibilities of raising three children on an extremely limited budget. I have learned to be resourceful and try not to sacrifice my family in pursuit of money. But, I worry nonetheless, as we all do. We all worry about finances, providing for our families, and being seen as successful by our friends, family and the community. Our desire to succeed can oftentimes take over our lives like an insidious disease. It is easy to get caught up in trying to keep up appearances. John is my daily touchstone. I believe that without him in our lives, we would be a resentful and selfish family. The love that he gives to our family has changed us all for the better.
John’s empathy is boundless. He has always been an engaging and communicative child. He wants to know each and every person that he meets. He genuinely accepts everyone for who they are. He is usually patient as he faces the confused looks of others, but he is sensitive to perceived rejection. He feels despair when he is unable to communicate effectively with teachers and friends, especially when he feels he has been treated unjustly. He withdraws in sadness in these situations where his communication disability controls and limits his true abilities. But, after his emotions have run their course, he gets back on course and tries again. If we could only have the same courage, we might live in a different world. We also face the same challenges on a different scale. Who has not tried to make friends? Who has not tried to connect? Whether it be in our family relationships, in school, on the playground, in our social circles, national and international relations, we are all on the same journey to be heard and understood. We feel a desire to speak up for ourselves and others when we see injustice. Human beings desire to connect with and understand each other. This is what makes us human. John has taught our family the value of this human connection by his daily struggle to be part of this world.
I think of all the specialists who have taught my son John in his eight years with endless gratitude. They have spent countless hours endeavoring to teach him to be understood by the world at large. And still, he struggles daily to speak and be heard. His frustrations sometimes negatively impact his behavior at school. He knows that his family and his teachers all expect the best from him. We don’t give him a free pass because of his disability. To do so would mean that he would be defined by his Verbal Apraxia. Instead, my expectation is that he can look beyond his disability and understand that we see him as a capable person who is learning to handle life’s frustrations. Sometimes, it feels like an endless battle. As he matures, new emotional hurdles have to be navigated. We are committed as a family to help him through the quagmire toward a strong sense of self. And sometimes I wish that he could be accepted just as he is. Maybe, just maybe, he can teach us more than we can teach him.
Justin MacNeil "Reading Words" original song
The road to functioning communication for a child with Verbal Apraxia is long and arduous. As caregivers, we walk the fine-line between acceptance and expectations. We balance our hopes for their recovery with their need for acceptance in the present. In this balancing act, we find our strength as parents, therapists, teachers and family members. Our children are the greatest teachers. I often repeat the words of Fred Rogers to my children, “ You always make each day a special day. By just you’re being you. There’s only one person exactly like you in the whole world. And that’s you yourself. And I like you.” Each time I say this to them, I also give myself courage and acceptance. When Fred Rogers said these words on his PBS children’s show Mr. Roger’s Neighborhood, we felt accepted and special. In his book, “The World According to Mr. Rogers: Important Things to Remember”, Fred Rogers explained his philosophy of child development.
“When I say it’s you I like, I’m talking about that part of you that knows that life is far more than anything you can ever see or hear or touch. That deep part of you that allows you to stand for those things without which humankind cannot survive. Love that conquers hate, peace that rises triumphant over war, and justice that proves more powerful than greed.”
As Thomas Mann once wrote, “All life is a retelling of the story in the forms of the myth.” We all walk in the footsteps of others, endeavoring to tell our own personal story. But, our story is all the same really. We are born. We struggle, love and despair. We feel grief and regret. We achieve and fail. We rebound. We live. And along our journey, we meet special souls who change us. They change us because their struggles put ours to shame. How can we despair when we are witness to a pure heart? How can we not rebound from our daily frustrations and struggles when we see the courage of a child? I truly believe that these special children are sent to us to remind us that the gift of human language and communication should not be taken for granted. They struggle to speak, while we struggle to listen. And somewhere in this struggle, our eyes will light up in recognition and understanding. They will smile and exhale in relief. In a world where communication is so thoughtlessly abused and we destroy each other with words and misunderstandings on a daily basis, it is easy to lose faith. John has taught our family to be thoughtful thinkers and perceptive listeners. He has taught us more than we could ever teach him.