Thursday, January 28, 2010

Every Child Deserves A Voice

by Megan Steinke (originally on; posted with permission of the author)

Childhood Apraxia of Speech is a motor speech disorder, a neurological disorder where the child cannot plan and coordinate speech movements. Ever have that feeling of a word on the tip of your tongue, but you can’t quite say it? Or slip over a word you knew and could say in your head? Imagine every word you ever tried to say coming out like that – even though you know what they should sound like, the sounds never quite make it from your brain to your mouth the way you want to say them.

CAS isn’t a very well-understood disorder. It’s also not a very common one, which is why resources on it for parents are pretty scarce. If your child is autistic or ADHD, dyslexic, any of the “common” special needs, you will find a wealth of information. If your child is apraxic, you might think he’s ceased to exist in the literary sphere. There are papers written by speech therapy professionals for speech therapy professionals, but to a layman they’re difficult to understand. Even books devoted to speech disorders don’t really cover it. If it weren’t for the Apraxia Kids Network website, I would have feared I was the only one. The website has been a lifesaver, both in terms of scholarly articles as resources, and as relief from the feeling of isolation that this diagnosis can bring.

Getting a diagnosis of CAS is very scary, but my children had been in speech therapy for two and a half years by the time we got it, and though I was terrified for their future, it was at least preferable to not knowing why they weren’t talking. We had been to countless speech therapists, and finally got in to see the pediatric developmental neurologist, who immediately diagnosed both boys as nearly identical cases of apraxia. He thought they were quite textbook and was surprised no one had diagnosed them before. He was fascinated by how alike their apraxia is. Since the causes of CAS are unknown, a set of identical twins with identical apraxia seems to make speech pathologists’ research senses tingle.

It’s a long and arduous process of speech therapies to bring language out of children with apraxia, and it’s emotionally exhausting for the parents. Support groups are invaluable. It’s a relatively rare disorder, however, so the only support you get may be online. There is a local CAS network in my area – in a group of seven cities with a population in the millions, home to the largest naval base in the world, there are nine children diagnosed with CAS. Two of them are mine. It is very isolating to deal with that kind of number.

I am continually having to explain apraxia to people, because it is so unusual and so unknown – even to their teachers. I spend a lot of time fighting for them, to get them the help they need. The cost of speech therapy for two children in the amount needed for CAS would bankrupt us if we went through a private firm, or worse, through the local children’s hospital. When we saw that the cost would be nearly $600 a week per child (and would go up if insurance decided to stop covering it), we knew we had to find other means to get what we needed. The local university has been invaluable to us, as they have a speech therapy program and need clinical patients for their students. My boys have received excellent therapy there, from some truly wonderful young women who put their whole hearts into my children’s care.

“Will my child ever speak normally?”

I stopped filling in my boys’ baby books as they got older and older and that “first word” slot was staring me in the face. One year old. Two years. Three. I wanted to write something down, anything. But their only noise was a monotone “mmmmm”. I wanted that word. I wanted it very badly. My children were three years old before they called me “Ma” for the first time, and for a very long time that was their only word, and I hugged it close to my heart every time they said it. On their fourth birthday, they had three words: Ma, Da, and buh (brother). They were four and a half when they told me – in words, not sign language – that they loved me.

When they were younger, we would watch the Signing Time DVDs, because the handful of signs that they had learned in speech therapy were their only means of communicating. I would listen to the song at the end – “Show Me A Sign” – and cry because the lyrics that Rachel de Azavedo wrote so touched me. They were exactly what I wanted to know from my children, exactly how I felt. I didn’t feel like I knew them sometimes. I just wanted to know that they were in there. They seemed so distant sometimes, though they were always affectionate, and no one ever saw signs of autism in them, something I feared. I always felt uncertain that I knew anything about who they were.

Tell me that you love me
Tell me that you’re thinking of me
Tell me all about the things you’re thinking
Tell me that you’re happy and you love it when we’re laughing
Tell me more, show me a sign.

I know I’m not alone in that feeling. An SLP presenting at the 2004 Apraxia-KIDS conference wrote a poem of sorts to describe it that is broadly similar, particularly emotionally, to the song. And I know the CAS children feel it too.

While visiting a friend recently who has girl twins a year younger than my boys, they played with the girls’ dolls. Dominic put a baby doll in a stroller, wheeled it up to his brother, and said, “I be the mama, you be the doctor, and this is my baby.” Chris agreed, so Dom in his high-pitched ‘mama’ voice said, “Doctor, something wrong with my baby, he don’t talk. Why don’t my baby talk?” It was absolutely heartbreaking, and I still cry to recount it.

It’s been very hard on us over the past four years since we first began to realize that – as Dominic so succinctly put it – something was wrong with my babies, but we are finally starting to see improvement in huge leaps and bounds. They’ve come from a handful of single-word utterances to long and complex sentences with a vocabulary nearly on par for their age level in only a year, though they still have a lot of articulation errors and strangers find them difficult or impossible to understand. I’m at about 60% understanding what they say. It’s a wonderful thing to hear my children talking to each other, or to have one run past and say “I love you so much, Mama!” I had worried I would never hear it. I hope someday I’ll hear it without distortion.


  1. Thank you for a well written article. You put much of my thoughts on paper.

  2. I understand. It is something that most people do not get nor, even care to understand. I have stopped trying to let people "in" on it. My girl knows I have her back. I don't need to try and make someone else get it, they won't. My confidence in her has helped her soar. Does she sound normal, no. I have learned to stop asking what she will sound like when she is an adult. Once I got over that, I was able to just let it go and be her proud mamma that loves her no matter what. Best wishes.

  3. well written and I agree, this is a hard journey..we've been doing it for 2 years and I jsut got out of an IEP meeting today battling with the SLP who just doesn't "get it"-clueless...but I shall continue my fight. Articles and testimonies keep giving me hope :)

  4. Megan, I was so touched by your article. I also have twins, fraternal though. I spent the first 3 years of their lives trying to understand Tevyn, I could get about 50% (thank goodness I taught him some basic sign language so that he could give me the basics). I didn't understand why Jasyn could talk "normally" and he couldn't. After a while Tevyn shut down and pretty much stopped talking because we would have to ask him over and over again to repeat what he said. You could see the frustration on his face because he didn't understand why we couldn't understand him! Finally we took him to a speech therapist and he was diagnosed with CAS. I had never heard of such a thing and was so frightened for him. We were dealt another blow when we found out that our state run medical card wouldn't cover his much needed therapy without a "medical diagnosis" as the cause. So after many other doctor visits and hearing tests, nothing. We would have to wait to see if he could get treatment when he started school. CASANA has been a wonderful resource for us to help Tevyn now, along with the advice given to us by the speech therapist we have worked really hard with him and he has made wonderful improvements. It makes me feel better to know we are not alone and there is hope for Tevyn to be able to properly express himself with words.

  5. What a well written and touching article. Why do tears still come to my eyes when I read such stories. My son is almost 12 still; I will never forget how hard it was when he couldn't talk. I was in a store the other day, the mother said to her crying child "use your words, I can't understand you". I had to walk away as I fought back tears remembering how hard it was when we couldn't understand my son and he was frustrated to the point of tears.

  6. I was so pleased to see an article about apraxia. My son, now 14, was diagnosed when he was 6 not by his speech therapist, but by the occupational therapist. To read what all of this entails now that he's been through this is so interesting. All he could say when he was 3 was "tee-tee" and "dee-dee". Those were his words for everything. Once we started speech at the age of 3, he started progressing. We finished speeech therapy by age 8, and he could speak well except for his "r" sound. Most of the time now he does great. Thanks again for this great article!

  7. Thank You so much for your touching article which describes everything we were and are going through.
    My now 5,5 year old son had seen speech therapists starting at age 2 with no progress at all. A year ago I started searching the internet, after being frustrated and sad to watch Ruben wanting to speak out but just not being able to.
    I found a mother describing her son`s attempts to speak exactly as my son did. Her son had been diagnosed with Childhood Apraxia of Speech.I printed out every information I could find (which was so little) and showed it to his therapist.After a week he gave me back all my printouts and told me ``Interesting, but I treat him the right way.``I felt so stupid.
    Finally he was diagnosed at age five and we found a wonderful therapist, who has helped us so much. Ruben is now able to say his own name, speak little sentences and we feel, he is on his way to be a happier child.
    CASANA is a treat for every family with an apraxic child. We live in Germany, where CAS is not an issue at all.