As Zachary gets older, his developmental delays become more noticeable between him and his peers. The fact that he has no words is the biggest one, which is also sometimes the saddest for us. We wonder if we will ever hear that little toddler voice of his and if he will sound just like Landon, our 2-year-old son. Every time I hear my name called from Landon, my heart melts and aches all at once. It is a bittersweet world that my family lives in. How can I really enjoy those moments when I’m still longing for that moment with Zachary?
Besides having autism, Zachary also has childhood apraxia of speech (CAS). I often find that people know less about apraxia than autism. Zachary finally desires to communicate with the world, but with CAS, he has a motor planning issue that prevents him from saying a word or sound consistently. It is a neurological disorder. The brain knows what it wants to say but can’t make the physical movements with mouth to make the correct word, or sound. There is basically a disconnect with the brain and the mouth.
As parents, we decided to start off with some sign language for Zachary. He knows two signs: “more” and “all done.” When he first learned those two signs, it was pretty life changing for all of us. Zachary doesn’t even know how to shake his head “yes” or “no.” It has always been a guessing game, and we can only hope we are guessing most of his needs and wants correctly. At least when he learned “more” and “all done,” we were given a glance into what he wanted and needed at the time.
Within recent months, Zachary has been using the sign “more” for “I want.” When he is eating a cookie and he signs for “more,” I know he wants more cookies. But when he points to the bathtub and signs “more,” I know he means “I want a bath.” Those are two different needs, so we knew we needed something more for him to express himself.
There are so many options out there, which is great, but overwhelming. As a parent, there is always some self-doubt when making decisions from the moment you conceive that child. What is your birth plan? Will you breast feed or formula feed? What bottle will you use? What school will your child attend? What after school activities will they do? It never stops, but as a special needs parent I feel like some of our decisions are life altering and time is always everything. What will happen if we wait too long? What will happen if we rush this? How long is this waitlist for? Time is a battle within itself.
This year, my husband and I, with much deliberation, chose to make our own communication book with Zachary’s teacher. I say much deliberation, because deep down there is a part of us that thought if we just wait a little bit longer maybe he will just talk. However, how much longer should Zachary not be able to have voice? It is not fair to prevent a better form of communication, because I’m still holding on to a prayer that seems to go unanswered.
We took real pictures of items that he uses every day, like his favorite cookie, specific brand of juices we use, his favorite toys, even pictures of our backyard, bathroom, and his bedroom. The book is filled with about 20 pages of tiny laminated pictures that are on Velcro on each page. When we first started this book he was only able to look at 6 pictures at a time. Just scanning a book, a picture, the television is a triumph in itself. Zachary is now able to flip through pages, and pick what he wants and brings me the picture.
He caught on so quickly that it makes me sad to think how long he just sat within his own mind, never being able to get his needs across. My husband and I, as do all parents, do the best we can. I would like to think that I guessed Zachary’s needs mostly right these past three years. However, now that he can pick what he wants to eat, what he wants to play with, and where he wants to go, I don’t think I would have picked half the things he gives me on daily basis.
Recently, during home therapy, while my husband and I were in the other room, Zachary was crying with his ABA therapist. It is five o’clock at night, and the sun is getting lower. Normally, during the week my husband wakes Zachary up before the sun is up. He is off to school for the day, which is filled with lots of other therapies and activities. He takes an hour long bus ride there and back, and comes home to a couple more hours of therapy. Somedays, like anyone else coming home from a full time job, Zachary just wants to rest. That is where we are today.
Today is also different than other days. Today Zachary has a communication book. He flipped through his book and came to the last page in there. It has pictures of me, my husband, his brother, and his aunt. He first pulled off my husband’s picture and then my picture and handed them to his therapist. Zachary had used his communication book to ask for his parents for the first time.
He is 3 years old. He could have asked for anything in this book: ice cream, or to play on his swing. Instead, he asked for mom and dad. He has the same needs and wants as any other child, and sometimes you just want mom or dad. Sometimes, as parents, we need to be validated as well. Although Zachary will reach out to us and come to us when he needs us, it is not the same when I know he is trying to communicate like you and I do everyday. So in this moment, my family will bask in this bittersweet world for a little bit longer today.