How does having a child who is nonverbal affect a family? We are still figuring it out ourselves. For his tenth birthday this weekend, I penned a letter to my son about his challenges with speech and my wish for him. But the message, I discovered, was really meant for myself.
For your tenth birthday I would love to give you the gift of speech. I have no power to do this, of course, but I wish it so hard. Speech, speaking, communicating in a language that we understand … that would be my first and foremost gift for you.
I am fully aware of my own frustration that you cannot speak. That you cannot offer information or answer much more than yes-or-no questions. That I don’t know your favorite color or what you want for your birthday. When you are feeling sick or what foods you are craving.
What I am less aware of is the depth of your frustration. Because you cannot express that. I can only imagine that your angst far surpasses mine. It must be so aggravating that supposedly intelligent adults have no idea what you are saying. That we fail to grasp your basic needs and requests. And that we frequently guess wrong.
I’ve never heard you utter the words, “Can I invite so-and-so over for a playdate?” “I’m hungry.” “I want … I love… I hate…” I do hear those statements ad infinitum from your siblings, plus their constant squabbling and their millions of thoughts that spill out in a childlike stream of consciousness.
The truth is we do feel you. We know your moods and can sense when a meltdown is coming on. We know you in a different way than we know your siblings.
Speaking would probably be more a gift for me than for you. If you spoke, life would be much easier for me, your father, sibling, grandparents, teachers. We would be aware of what you know, whether you don’t understand and what you flat out ignore because you couldn’t care less.
Every year, all week leading up to your birthday, I don’t rejoice — I panic. I panic because you are another year older and yet you still do not speak. The therapists always assured us, “It will come!” “Give it time.” One set of experts decried learning sign language when you were young saying it would encourage you to be “lazy” and not talk. Another set of experts wanted to focus on picture cards and communication boards, which you hated.
If I had trusted that tried and true, nagging maternal instinct, I would have pressed the issue. But who was I to argue with professionals who were nonplussed by your lack of speech at age 3, then 4, 5 and 6? Anyway, we had enough to worry about, from open heart surgeries to advocating for inclusion at school. I rested content that “speech would come.” Yet as you grew to understand two languages fluently, you could barely imitate their sounds and construct words.
The experts eventually became concerned and added a diagnosis: Apraxia. Then the speech people argued about whether it was apraxia or dyspraxia. They said It would take work, repetition and everything we had ever done, times the thousands that we would never be eligible for, with the time we would never have enough of in a given week.
Thanks to the “experts,” I never considered that perhaps you would never actually be able to speak — and how we would deal with that as a family. Lately, I’ve started to consider that prospect.
So this year, as I was partaking in my annual pleadings before your birthday (please let him speak, please let him speak), I stopped myself.
For your tenth birthday, instead of wishing that you will speak — which I cannot make happen anyway — I wish really hard that I will find new ways to listen. I need to find new ways to hear you without speech. New avenues of communication.
My eyes must watch for subtle cues, rather than depend on hearing the raw exhaustion in a voice that indicates an oncoming meltdown. My mind must decipher between the various yelps of joy, fury, aggravation, surprise — all of which sounds the same.
My heart must listen louder than my ears.
Listening with one’s heart, for a still small voice, rather than an earthquake, takes fine tuning, patience, more attention and discipline. I’ve spent 10 years failing at this.
Do I want you to speak? Hell yes. Will it change my life? Certainly, and yours as well. Can I be content if you never speak? Honestly, I have little choice but to cope with that, but I’m not sure I’ll ever be “content.”
What I should do is make a conscious effort to listen to your current communication and adapt to it, rather than always try to fix it.
And perhaps (a big maybe!!), if I rest from trying to always fix things, I’ll be quiet enough to learn something new.
I doubt I will rest entirely, because mothers (parents) never do. But here’s to a new decade and a new direction in life.
Happy birthday, Daniel!