He'll Talk When He's "Ready"... Not Exactly

[By Angela Brown; submitted as part of application for CASANA's Parent Scholarship Program for the 2009 National Conference on Childhood Apraxia of Speech]

The words “I do” can mean something different to so many people. In many it may spark the image of a bride and groom.  For people who have children with Childhood Apraxia of Speech, it may be a phrase that their child is able to say clearly after years of speech therapy.  When I was pregnant with our son, I remember watching "Good Morning America" during National Autism Awareness Week and being struck by the ratio of boys compared to girls with Autism.  I felt so scared to have a boy.

 

Andy was born a healthy boy, weighing in at 7 pounds 15 ounces, just like his sister.  At 15 months, Andy said “bye bye” and we were so excited, I remember that day as clear as it was yesterday.  That was the last time I’ve heard it said that clearly.  Looking back I also recall how excited we had to get him before he could get the words out of his mouth.  Things seemed to progress normally and then we noticed that Andy’s walking was unstable and he kept falling.  We came to learn that he was Hypotonic, which means basically low muscle tone.  But what people need to understand is how much being hypotonic can affect your entire body.

 

My husband and I yearned to hear the words “mommy and daddy” and they didn’t come.  Andy was able to say a few words such as; truck, cap, sock and shoe.  But eventually we no longer heard those.  We watched him play and knew he understood what we told him but he just seemed to babble back at us.  People thought it was cute and kept saying he’ll talk when he’s ready.  I guess in my heart I knew it was more than that.  We turned to our pediatrician for help and were referred to speech therapy.  After meeting Andy’s speech therapist, Anne, I knew she was a fit for him.  He seemed to bond with her and she helped us understand exactly what Apraxia could mean.  We met for two or three sessions to have Andy evaluated.  The diagnosis was severe Childhood Apraxia of Speech, also one of the most severe Anne has seen.  Basically here’s where our journey begins.

Our first born, Madeline, I am convinced was born talking and hasn’t stopped since then.  I began to notice that Andy “talked” as much but we just didn’t know what he was saying.  Out of frustration, Andy began to bite and hit.  Here’s this little boy trying to get us to understand and we just weren’t able to.  It was one horrible fit after another.  My daughter got the majority of the biting which still makes me feel horrible.  I believe in Andy’s brain, that when he was babbling to us he was hearing what he wanted to say but what came out of his mouth was completely different.  I would dread taking him places because he was like a super ball in a room and then add the fact that he wasn’t able to tell me what he wanted. 

When Andy was about 18 months old, I kept waiting to hear him call me mommy.  If he was very upset or worked up about something he would call out mama.  People constantly said, "Don’t worry; he’ll talk when he’s ready."  What we didn’t know was that Andy was ready to talk but physically he wasn’t able to.  When I’ve told people that Andy is able to understand just about everything you say; he’s just unable to communicate back with his voice.  I’ll be signing a few things to Andy and I have had people tell me, "Well he looks normal."  That’s when I tell them that Apraxia doesn’t have a face.  It truly affects more than an individual person.  We try to make it an open topic within our lives.  A few times when Andy has had meltdowns and I don’t understand why, I’ve had people look at me and stare.  On the flipside, being so open has helped two of my friends from high school get help for their children.

 

Everybody wants the best for their children.  But when one of your children has a problem the balance can be harder to maintain.  Our daughter is very aware of her brother’s lack of speech, what she never forgets is that he understands almost everything people say.  Having a son that has a special need has made my husband and me more aware of everything.  When I tell people about Andy I never say there’s something “wrong” with him.  There’s nothing wrong about him, he has trouble forming words is all I say.   

Having a child with apraxia of speech has made me see the genuine goodness that people have and it’s also shown me the epitome of ignorance in society.  For as difficult as a single day could be, we don’t know any other way.  Honestly, I can’t even imagine what it would be like to have two children talking like my daughter does.  We laugh about it and make jokes, but we pray for it every day.

   

Andy recently celebrated his fourth birthday and it was special.  He was able to blow out his birthday candles!  It was very exciting for my husband and I, as well as, Andy.  If you asked me at age 22 would I ever cry at the sight of a boy blowing out a birthday candle, I’d probably tell you no.  It was great!  

Nobody ever really knows what life brings.  I’m fascinated by the way children are taught in speech therapy, all the different things to help lessen the burden of Apraxia on a child.  Watching Andy go from Speech to Occupational Therapy or Physical Therapy on a Monday afternoon just amazes.  Some days there’s drastic improvement and other days, it seems like he’s regressed.   At home, most of Andy’s play is based on his therapies.  I don’t know many 4 year olds that hang from a chin up bar in the basement for fun.  We often put small objects in rice to help with Andy’s sensory issues.  I always say, rice is the new Play-doh!  It’s funny to see the expression people get when they come over in the winter and we’re blowing bubbles.

 

I’ve declared this the summer of fun!  After spending almost one year of doctor appointments ruling out Muscular Dystrophy, cardiac problems, neurological issues, genetic issues, vision and hearing problems, I think my family deserves it.  Rather than running to a doctor's appointment, I try to make it a few hours at a park. One day my hope is that I’m standing watching my kids playing and Andy will stand up and say something like, "How am I doing mommy?"  I also wonder how many things Andy will be able to tell me that his sister does and blames him!  Either way, I look forward to both!