If I had one wish, just one. . . my wish would be that my son’s voice would unlock. That my son could do what we take for granted every single day without a thought.
That my son would then be able to say his name.
That my son would then be able to say he loves us.
That my son would then be able to tell us about how amazing he did roller skating with the school’s physical therapist without having to hear it from his teacher.
That my son could make his voice heard.
You see, my son has childhood apraxia of speech, and he is autistic. He is three years old, and he is simply magnificent. He is so gifted. So smart, sweet, and funny (you can have a sense of humor without speaking), but he has his challenges like we all do in life.
He communicates with sign language, PECS, and an AAC device. He tries so hard to speak. Watching him groping is heartbreaking. Groping is when children with CAS are attempting to move their mouth, jaw, and tongue but nothing comes out or what comes out is not what they wanted to say. How frustrated that must make him feel.
With my son’s determination, it does make me feel very optimistic he will speak. He is the hardest working 3-year-old you will ever meet.
It’s just going to be a long journey, and I will be his voice until his is found. I will make his voice heard through mine.
There are moments it’s hard not to be envious of other parents who get to hear their children speak. One of the most important milestones we parents look forward to. My envy is in no way meant as negativity, it is just a painful reminder . . . that’s all.
Our son speaks to us in different ways. He tells us he loves us, what his favorite TV show character is, what his favorite color is, his favorite song, etc.
It just takes a special mother to hear what her child can not say.
Apraxia and autism have taught me patience, strength, and grace. It has taught me there are so many ways to communicate without a voice. You learn to listen in other ways. You just have to watch the unique ways he tells you.
Every night we read a book called Spot Loves His Mommy. When I read the title, my son will point to me and his face lights up, and then he gives me a hug and kiss. It’s the best feeling in the world. That’s just one way he says I love you without words. He is telling me Rocco loves mommy.
I was meant to be a mother. I was meant to be a mother to a child with invisible disabilities. This was God’s plan for us, and he knew I had the ability to be selfless and strong. He knew I would always put him above all. My son, he is our rainbow baby after so much loss.
They say we lose ourselves in motherhood and we need to remember we were someone before becoming a mother. That we have our own identity.
I personally disagree with this statement.
Being a mother is my identity. Yes, I’m a wife, daughter, sister, aunt, and friend too, but being a mother is what I live for.
It motivates me to keep going, to keep being the best version of myself. To keep fighting and advocating for my child. To educate myself and read every book possible.
I’m still me, just now my life’s mission is being able to give my child all he needs to thrive to become a successful man. I’m sorry if you can’t understand this.
I wish I could know everything my son wants to tell me.
I wish he could tell me his favorite part of the movie and why.
I wish I could hear him call my parents Grammy and Grandpa.
I wish I could hear him say Momma and Daddy.
I wish he could talk my ear off. You hear so often parents complaining about how they wish their kid would stop talking. You have no idea. Really, you don’t. Don’t wish they would not talk as much as they do . . . what I would give to have my son “talk my ear off.” To hear that sweet little voice asking me why nonstop, saying no, saying momma, telling me a story he made up using his imagination. How that stings so badly to hear that being said by parents.
Trust me, the silence to you may be a relief, but to my family, it’s a whole lot of intensive speech therapy, lots of tears, PT, and OT. It’s anxiety and fear for your child. Worrying if our child will ever be able to talk. It’s sadness for my sweet boy—gut-wrenching sadness.
I wish he could tell me about his day at school.
I wish he could tell me all the brilliant ideas he has.
I wish he could say all the things that have been trapped this entire time.
This is the part of the apraxia that makes me question why? Why him? Why apraxia? Why the most severe speech disorder a child can have?
I cry because I want to hear what my son has to say. What his voice sounds like.
I cry because of how lonely he must feel at times, how isolated he must feel.
I cry because of all the times people speak to him as if he’s not in the room.
I cry because I see how hard intensive speech therapy is and see him struggle or become overwhelmed with the therapy techniques.
I wish he didn’t have to fight for his voice. The gift of speech is so very special.
Just imagine for a moment, not being able to share what you’re thinking or feeling—moving your mouth to speak and nothing coming out.
I wish he could spend his free time being a 3-year-old. Instead, every day he has intensive speech therapy, occupational therapy, and physical therapy.
I wish people understood that he knows what you are saying to him. A person’s intelligence isn’t measured by speech abilities.
I wish people knew that apraxia affects the entire body. Not just speech.
I wish I could give him my voice.
Apraxia is different from other motor speech disorders in that it is not caused by muscle weakness or paralysis of muscles. For speech to happen, messages need to go from your brain to your mouth. These messages tell the muscles how and when to move to make sounds. CAS is a neurological disorder and is lifelong. Children with apraxia of speech don’t simply grow out of this. They can overcome it with hard work, motivation, and years of speech therapy.
A child with CAS knows exactly what they want to say to you in their head. I will never give up on this fight even if it takes years and years to hear his voice. I look forward to that day my boy can tell me everything he has not been able to say. My wish is one day he can tell his story about how he fought for his voice.