Friday, June 26, 2009

With Apraxia There Are No Magic Bullets; But Are Unexpected Benefits

[by Michele S., as part of CASANA's parent scholarship application for the 2009 National Conference on Childhood Apraxia of Speech]

Childhood Apraxia of Speech affects our six-year-old daughter’s life every minute of every day. She is the sweetest little girl who loves and wants to get to know everyone she meets. The way she expresses herself draws some to her and scares others away. Some people are just plain confused. Anna has not been deterred by negative reactions in the past, but has recently become more concerned with how others feel. Even in an academic setting, there are many who assume that the inability to communicate freely or “on demand” automatically means that there is a cognitive issue.

School is a continuous battle for us. There is no ideal placement for a child who needs to be among typically developing peers, but has language delays that are seen in many subject areas. I would often ask myself if money were not an issue would everything be better? Of course, I immediately think! However, putting a child with Childhood Apraxia of Speech in a private school, when her siblings are all in public school seems like overkill. After all, these children are very capable of functioning in society if proper supports are available. Anna needs to be with good language role models and really enjoys their company. It would be detrimental to put her in another type of setting, which is often the case. This has unfortunately caused animosity between the school system and our family.

Speech therapy is another area of concern. We went for years without a (speech) diagnosis and no proper therapy. Some summers, there was no therapy at all. Very little progress was made and this preoccupied the entire family. We finally found someone qualified to evaluate, diagnose and treat our little angel. She has made so much progress since then and we have learned so much! It is still a battle to get the understanding and support of her school speech therapist, but we will not give up!

As a parent of a child with Childhood Apraxia of Speech, I spend a tremendous amount of time learning about the disorder, the therapy and treatments, and more about my child in general. This is absolutely a labor of love! I enjoy the learning, the insights and new perspectives of the professionals and meeting the other parents of children with CAS. We are a small, but passionate group with so much to offer.

There are so many unexpected benefits Childhood Apraxia of Speech has brought to our family. Anna’s big sister is 8 years old, has the patience of a saint and is a natural speech/language pathologist! She frequently role models and participates in activities to encourage Anna which is extremely helpful to us all! It is amazing to see such a young girl in such a mature role. We have incorporated the use of sign language, which has helped strengthen this relationship and helped big sister with her own expressive/receptive language disorder.

Anna has a younger brother with suspected Childhood Apraxia of Speech. The Early Intervention staff does not see the signs that we see. We now know what to look for and have had to advocate very hard for needed services. Childhood Apraxia of Speech is difficult to describe and there are not enough trained professionals to help parents identify it early on. Instead of being fearful or discouraged, we are now very encouraged by all the available information.

Our daily way of communicating with the 3 youngest children has changed into a way of life instead of just weekly therapy. We do not sit on the sidelines and leave it all up to the therapist. We try to always be active partners; it truly has become a lifestyle change. Signing, modeling and increased wait time has not only benefited my children, but also the class I teach and many other children we see on a weekly basis. I am always impressed with the enthusiastic curiosity of the children and adults who are near or with us. Their attitude toward communication seems to be better because of our example.

Of course there are the moments when all the time spent going to therapy, conferences, and work on sound productions do not seem to yield the results we all want. But then something wonderful will happen…Anna will spontaneously count to 10 when playing Hide and Seek! Saying every number (except 7, she always skips 7!) clear as can be! I wish I had the video camera all the time! We have all learned to appreciate the gift of communication more than we ever thought possible.

Financially, Childhood Apraxia of Speech takes its toll because of the time and expense of therapy, the travel, and the emotional investment put into this one child, sometimes at the expense of the others. It can put a tremendous burden on the entire family if not monitored every now and then. The guilt of not doing enough for some and too much for others is something every family must face, but the overwhelming importance of a child being able to effectively and consistently communicate their needs is always at the top of the list in our house.

There is no magic bullet with Childhood Apraxia of Speech and no overnight successes and we know this. However, Childhood Apraxia of Speech has brought us closer together as a family since there is always so much to tell and we celebrate every success!


  1. This is so true. My little son, McKinley, has Childhood Appraxia of Speech, and I can attest to the joy of seeing his progression in his speech ability due to his therapy. You article is so true. Thank you for writing it! Justin Johnson

  2. So true. My littlest, 4, has severe Apraxia and her older siblings, 6 and 7 are her advocates, defenders and speech patholgists at times. On the even days, I think the schools and her plan is going well and on the odd days, I feel I have to fight, do more research etc to improve her life and circumstances.

    Our family life revolves around her at times and at times I realize my other two need love and attention (in a different way).

    I am thankful for the Apraxia parents on the list serv who have provided me with intelligent information and support and are going through more or less what my family goes through.

  3. It's true how many people think that a child with apraxia are considered "slow". My son is now 3 1/2 and struggles with his speech. He is very intelligent. By 2 1/2 he already knew his colors, alphabet and some of the alphabet sounds. I use to work at an elementary school and many kids started school not knowing their ABCs (they didn't have any sign of learning disabilities.) People need to be educated and know that kids with apraxia are not dumb!

  4. Unfortunately many people think that kids with apraxia are "slow". My son is 3 1/2 and suffers from it. He is very behind in his speech BUT is very intelligent. By the time he was 2 1/2 yrs old, he already knew the alphabet, colors and the majority of the sounds. I use to work at an elementary school and many kids didn't know the ABCs and they didn't have any learning disabilies. encouraged!

  5. My daughter is 7 and has apraxia. She really struggles with reading and math, although I have seen some improvements this year as she is repeating 1st grade. Does anyone know if there is a correlation between apraxia and learning disorders? I just wonder if she did not have apraxia, would she understand more in class?

    1. Yes, these 2 issues can be related. My 4 and a half yr old also has severe apraxia and learnig issues...but is very smart, as weird as that might sound. He learned all the colors, the alphabet, the words 1-10 and #'s 1-20 before he learned to do simple things like cut with a scissors. Along with the apraxia he also has partial agenesis of the corpus collosum and a benign tumor in his brain

  6. My questions goes out to parents with older CA kids in school. It's great to connect with other parents of CAS kids - my Son is 4.5 and took a huge leap into speaking over the last few months. Ty has made huge inroads with speech this last year and is approx. 60% understandable now and increasing everyday. I would like to know what problems he may face as an older kid in school with reading, writing and learning? Should we look at software to help him communicate or is it redundant if he can speak? It seems redundant to me but I can't see everything he will face in the future.