Tuesday, June 30, 2009

The Roller Coaster Ride That Is Childhood Apraxia of Speech

[by Jill, as part of CASANA'S Parent Scholarship application for the 2009 National Conference on Childhood Apraxia of Speech Conference]

Before my son was born, I was an enthusiastic middle school teacher in a tough part of Chicago. I was dedicated to struggling readers, writers, and mathematicians. But I drew the line at "special education." That wasn't my territory, not because I didn't care, but because I didn't know how to really participate. Back then, special education and general education were two very separate worlds.

Then I had my son and slowly over time, my world view changed both professionally and most dramatically, personally. Evan was perfect and beautiful and filled my heart with indescribable joy. I never dreamt that he would encounter challenges beyond the normal life experiences. I was a first-time mom, living in a rural area, with no extended family to "hang out" with. As I took my little baby in for his well-child visits, I would look at the poster on the wall of the exam room. It outlined language development for the typical child, with all the important milestones. I noticed that Evan was not doing most of the things he was supposed to be doing. During his nine-month checkup, I expressed my concerns to his pediatrician. He said, "Let's wait and see. Boys tend to lag behind girls in development." Everyone else echoed that same feeling, some people even mentioned how Einstein didn't talk until he was four. Looking back, his minimal vocalizations, lack of tongue movement, etc. were so obviously different than the norm. I regret that no one ever seemed alarmed, not that I feel that intervention at this point would have made any difference.

At each doctor visit thereafter, I expressed my concern about his language development and how it was not at all comparable with what was listed on the chart. Finally, at 18 months, the pediatrician recommended that I contact the local Birth - 3 program for an evaluation. The results of the evaluation were quite a shock. I thought he had delays in language development, but in fact, their results indicated that he was delayed in 4 out of 5 categories! Hearing these results was the beginning of a long roller coaster ride of emotions and advocacy that continues today as my son progresses through elementary school.

Progress in speech development has been painstakingly slow. This slow progress has me on a mission to find out how I can help my son. At first I thought he was just slow in learning to talk. A gap began to grow between his expressive and receptive language. Eventually, he was diagnosed with Childhood Apraxia of Speech. As we progressed through therapy and Early Childhood programs, I learned that I had to be the "case manager" for my child. This affects my life in many ways: I invest a lot of time in searching for appropriate services, making phone calls, driving to therapy appointments, meeting with school personnel, and educating myself and others on this mysterious condition known as apraxia.

Professionally I have, of course, become more interested in special education. I'm trying to figure out this inclusion thing - how to make it work for everyone (not an easy task). I also got involved in an interdisciplinary leadership training program that focuses on children with developmental disabilities and their families. This has, among other things, allowed me to attend national advocacy conferences.

Personally, I have become a parent advocate. I am proactive in educating the community about apraxia. I spent man hours in my son's classroom, helping his classmates understand why it is that my son has difficulty talking. At first they would say to me, "Evan can't talk." I would respond, "No, Evan can talk, it's just harder for him." I was glad I was able to be there to discourage that perception of him. I never wanted Evan to hear someone say that he can't talk.

As a teacher, I am now a big believer in the potential of inclusive education. While in kindergarten, my son's language grew more than ever before. Being around same-age peers that not only model language, but also engage Evan in academics and social activities is invaluable. Our school is somewhat unique in that it is very multicultural. When talking about diversity, most people talk about race, culture, language, and religion. We often neglect to include the abundant diversity in ability. I know that Evan's classmates have benefited from his presence as I've been fortunate to spend a lot of time with his classmates and their parents. Educators need to take on the responsibility of providing children with the opportunity to accept and celebrate the many differences in our society. We adults need to nurture and value the compassion that exists in young children. Wouldn't our world be an amazing place if we valued compassion as much as we do competition?

How does Childhood Apraxia of Speech affect my son? I'm not really sure. At this point, he can not express to me what is in his heart. I don't really, really know how he sees himself and I can't infer what his self-concept is. I don't know his own unique perspective on the world. He does know that he is "different" and that few people understand what he says. Right now, his social nature is an asset as he is persistent in forming friendships with other children. He's also a relatively happy child and doesn't get explosive in his frustration. He finds many ways to communicate, using gestures and words. I do think that his challenges with apraxia have allowed him to develop an incredibly empathetic spirit. When he sees a child cry, he puts his arm around that child. In silent gestures, he communicates that he cares and understands.

How does Childhood Apraxia of Speech affect me? Personally, I'm still riding an emotional roller coaster. I thought by now I would be more "together", that I wouldn't get sad at unexpected times. As I write this essay, I get tearful reflecting on the fact that I don't know anything about the inner life of my child. I get angry that he has such a huge challenge that affects just about every aspect of his life. I get frustrated that I can't ever do enough to help him or that I can't make it "go away." I get stressed over the behavioral challenges that arise. But I also get energized when Evan makes gains in the words he says. I celebrate even the littlest things that other parents take for granted. But mostly, when I tuck my son into bed every night, my heart fills with a feeling of love that I never knew before he came into my world.


  1. Thank you Jill for telling your story. In your story I also see mine. One difference being that I am also a teacher but was a Special Education teacher at the time. Being a Special Education teacher I knew too well the challenges that Kyler was going to have to face and this at times paralyzed me.

    You are right, as parents we are case managers. Our roles become more diverse than we ever expected them to be. Sometimes the demands seem too much to bear but then we look in our child's eyes and realize we are their voice. I truly believe that our little boys are teaching us invaluable lessons everyday. They are teaching us about the importance of friendship, family, acceptance, determination and courage. We are blessed.

  2. Thank you for sharing. It seems this is my story, too. I guess we have to stick together, as parents of this children who need our love and support so very, very much!

    Having a son with CAS has been a tremendous learning experience for our family.

    It's hard, but I can ONLY do one day at a time.

    It would be great to "talk" to other parents. If interested, my e-mail address is:


    Heather Hadlock

  3. This brought tears to my eyes... thank you for sharing and letting us all know we are not alone as mothers battling this bizarre condition. Your Evan sounds much like our daughter- mute in so many situations but so compassionate and having a desire to express what is inside. I find it wears me out, having to explain CAS to people repeatedly. Sometimes I just give in to their first impressions and allow them to believe that she is autistic/learning impaired/ADHD/selective mute/hearing impaired etc. All that matters is that we love her so very, very much and I will be her voice until she is ready to take control of her own.

  4. Great, Jill! Thanks for sharing your story! E has so much to tell the world! Keep up your hard work!

  5. I remember the day when my daughter was told her two year old son had severe apraxia. It took her breath away. For the past four months her son has worked with speech therapist, family and friends. He is starting to say some words and we are all very proud of him as he is of himself. He still has a long road ahead of him but there is no doubt in our minds that he will be talking. It is a slow process and takes a lot of love, patience and high fives.

  6. My daughter has CAS. I think she was about two when she was diagnosed. I understand the frustration of not being able to understand what your child is trying to say. It would break my heart everytime she would say something and I had no idea what she was saying. I could see the frustration in her eyes and she would just give up or get annoyed with me trying to help her say the words! We went to speech therapy for 3 LONG years. She started kindergarten and there she continued to take therapy.She is now 8yrs. old and talks really good! She still has that baby talk but it's not nearly as bad! I can understand her now! She still has trouble saying certain words but we are still working with her. Don't give up hope! I promise it will get better! It will take alot of patience and love. From the sound of your story, your son has nothing but love and support surrounding him!Good luck and best wishes to one mother from another!

  7. My heart reaches out to you and your son. You represent a voice for so many of us parents who live your experience everyday. My son (4 yrs) has not been official diagnosed but I am still diligently searching for a developmental pediatrician. He has had ST for almost 2 yrs and I am not giving up. However, I will admit there days when I am saddened and wonder why and what I could do differently.

  8. The last paragraph is exactly how I feel regarding my son's apraxia. Thank you so much for sharing. It has been a roller coaster and to know that you're not alone...it's a wonderful feeling.

  9. thank you for a very insightful and honest
    explanation, dont forget to give yourself a pat on the back now and then as you more than deserve it, praise, recognition and feeling valued are not just for our children they are important for their carers too !!!

  10. My thoughts exactly. Its a roller coaster of so many emotions. I too feel that we are their advocate, always an uphill battle to get what they need to be successful. My son too has apraxia, he is almost 5, as we approach entering into k, I am scared for the unknown, but, want him to continue building his friendships and being a happy little boy. He always has a smile on his face and that's what gets me through the day. The biggest reward that keeps me going is and was hearing him say "I love you mommy!" this was a huge leap forward and he continues everyday. I am so proud of him! To all of us moms whom do the best we can do everyday for our children. Keep your chin help high!