Friday, July 3, 2009

Diagnosis Brings Relief, And Yet So Many Questions About The Future

[by Karen Buescher, an essay for CASANA's Parent Scholarship Application for the 2009 National Conference on Childhood Apraxia of Speech]

Zack is 3 years old and was just recently diagnosed with mild oral apraxia and moderate CAS. Zack was born healthy with no complications at birth. All developmental milestones were met at the appropriate age except for speech and language. Zack was always a quiet baby and would easily entertain himself with play. At 15 months of age, he said his first word, "duck". However, he only said that for a few months and still to this day cannot say "duck". I did not realize that he was not developing speech like he should. See, not only am I Zack's mom, but I am also a speech therapist. One thing that I have learned from Zack having speech delay is that it is sure hard to separate being a mom and being a speech therapist. Don't get me wrong, knowledge is good; however, that knowledge can lead you to over diagnose your child so many times.

As I stated earlier, I am a speech therapist; a speech therapist who has limited knowledge about CAS. Many people take for granted that since I am a speech therapist, I should have known what to do to make my own son talk better. In response, I try to compare speech therapists to a doctor that specializes in one certain area. For example, if you are having chest pains, your family doctor may refer to a cardiologist. In the same token, if your child has apraxia of speech, you look for a speech therapist who has knowledge about apraxia of speech. Zack's dad, my husband has less knowledge than me. I try my best to explain speech terms to him but he has the look of deer in the headlights. The fact that we have little knowledge is going to change since we will be advocating for and assisting Zack to receive the services that he needs to improve his speech.

Zack is affected by CAS by not having his speech understood and he gives up easily. I am sure that Zack would love to speak to anyone and have his message understood without having to repeat himself numerous times. Zack becomes frustrated with talking and many times will stop trying to convey his thought or message. Fortunately for Zack, I can usually understand what he is trying to say. However, I cannot always be with him so I have to give Zack credit because he has learned other ways to communicate. He will use gestures or take you to what he is talking about. Also recently I have noticed that Zack is saying, "I can't do that." Of course he says it as "I ant U dat." This response is given frequently when we are practicing sounds or words. It absolutely breaks my heart to hear my little boy give up so easily. The one positive that I keep holding onto is that Zack has a great personality that makes him so fun to be around. I am hopeful that his personality will help others overlook his speech problems.

Zack has not only figured out how to get his message across, but also has figured out that if he plays alone, he will not have to talk to others. Many times when around other children, Zack will go and play by himself. Again, it breaks my heart to see my little boy playing by himself when other children are around. Hopefully, with time, his speech will improve and so will his desire to play with others.

As for the affect for us, his parents, we are relieved to have a diagnosis. Yes, it was hard at first to accept the diagnosis of CAS. one of the many hopes and dreams that all parents have for their children is to experience healthy, normal development. Then when we realized that our child was not developing speech sounds and talking like he should, we thought finding a diagnosis would explain why. Well, the diagnosis did help explain why; however, now we have many more questions and concerns. Many of these questions are about his future since he will be starting preschool in the fall. Will the other kids understand him? Will he be made fun of because he does not talk like the other children? Will he lose his happy go lucky personality that makes him so much fun to be around? So many unanswered questions that only time will answer.

As human beings, we take so many things for granted. The one thing that we will never take for granted is being able to have a conversation with Zack. We look forward to the day when we can sit down as a family and talk about our day. Currently, we can ask Zack about his day by asking him simple yes/no questions so that he does not get frustrated with his response. We will completely cherish the day when Zack can tell us what he did hopefully without having to repeat himself in order to be understood.


  1. Hi Karen,
    I have a 3 year old CJ who was just diagnosed with Apraxia about a month ago. At 18 months we began to notice that he had not developed any words. It has been a long journey to finally get a diagnosis.

    After reading your article it was like I was reading about myself and my son CJ. CJ has a very outgoing personality and he wants to communicate with others so bad. I have even seen him walk up to other children look at them and then hit them because he can't communicate with them that he wants to play.

    CJ just finished his first year of preschool in the Early Childhood Special Education program. It really made a difference for him and his language is exploding right now. It seems that every day I am understanding more and more that he says. Don't get me wrong he has a long way to go but I am pleased with the progress he made in preschool.

  2. My son Landon is 5 years old and getting ready to start kinergarte. I just teared up thinking about him in pre-school...

    We were told Landon had CAS when he was about 2 1/2. It has been a long journey. We knew around 18 months that something wasn't right.

    Landon didn't say much during his first year of pre-school (it was a special education school). He played alone a lot and mostly not appropriate play. (knocked over others blocks, etc...) When he graduated to a Pr-k class at four, he blossomed. He made his fist best friend, he played with all sorts of children, he even came home and told us stories of his day. It was not perfect. It was in his choppy language, but we understood everything he said. We all celebrated when he came home and told us that Ms. Rose (speech therpist) had a baby boy named Noah! He was in an inclusion class made up of mostly regular education kids and a few special ed kids.

    Now we are gearing up for kindergarten. I am a wreck. Will he be able to read on time? Write? So much of reading is sounding things out. He will be in a special ed class so we will know how he learns.

    Landon has come so far... From no sound at all (not momma or dadda)He didn't blow raspberries as a baby - to telling on his brothers and making up little white lies ;) He still struggles with a lot of words, but now he has mastered the game of Charades or will show us what he wants. It is so cute to hear him say it sounds like another word. Sometimes he just says it is too hard to say.

    I too felt like I wa reading my own story. Thanks for sharing.

    Mom to Landon

  3. thanks for sharing, my son is also 3 and has CAS, your story sounded much like my own. I have an older child with a speech delay (severe phonological disorder) I thought I should have known with my son sooner, but thier difficulties are completely different. What is the most upseting to me is that when James gets sick, he can not tell me what is wrong or what hurts and gives up easily, probably because he is sick and just shuts down. What also saddens me is that he does not like alot of attention from anyone. His preschool teacher even said he perfers to be ingored. However, I can see that he is very smart and a great problem solver. I wish you and your family well and god bless.

  4. My son was 2yr 8mo when diagnosed with severe verbal and oral apraxia. He was nonverbal. My speech therapist encouraged me to place him in "regular" preschool. 3 preschool teachers said I was making a mistake but we did it anyway. I had nightmares of sending my nonverbal child to be on his own. I would always try to "forget" to send an item on show and tell days, and be sick to my stomach that he could not even tell me what his snack was for the day. But, I slowly realized how happy he was there. My child was outgoing and did not seem to care he was not understood. I quickly learned that at that age chidlren don't always need spoken word to communicate. We learned simple sing language and started speech 4 days a week. He is now speaking in sentences and I understand approx 95% of what he says. One thing we never did was correct his attempt at a word and rather than making a formal sitting to do homework, I incorporated what his 2 ST were also doing, into our daily routine. A year later I have finally moved into the acceptance phase of this diagnsis but I worry what the future will hold. I see how strong my child will be from facing such a hugh challenge so early in life.

  5. Thank you so much for your words... they are so familiar, as many have said. My Rylie is severely apraxic at 2 1/2 years. She's been in Early On (special needs) school and therapy for one year now. Today, after her one-year evaluation, I found myself panicking at the thought of never being able to speak to my child. She is so incredibly vocal and expressive and funny... but not verbal. It has been such an encouragement to read your essay and the comments above. Thank you.

  6. Your story also sounded just like my son Ryan. He was diagnosed with mild apraxia at the age of 2 1/2. We had no idea what this was or what to do about it. We started speech therapy 2 times a week and it was a long process but he mastered sounds. Now Ryan is 4 years old he attended a gen ed preschool last year 3 days a week. His language flourished it was the best thing I could of ever done for him even though it was the scariest thing for me. He recieved speech 1 day a week through the school and continued the 2 a week at the hosptital. When he was first diagnosed his oral was at 9 months of age and now it is at 4 yrs 2 months of age and he is 4 yrs 10 months of age. Ryan will attend preschool 5 days a week this year and I am so excited for him.

  7. I live in the UK and have 3 sons, my youngest son, Callum has speech difficulties - he is 3yrs 6mths. We are currently undiagnosed but having read so much about verbal apraxia on the web, my husband and I feel sure this is what Callum has. Callum has been having speech therapy once a week since 2 yrs 6 months and has gone from saying 'egg' for absolutely everything to now saying more than 100 words (I've lost count!) He now says 3 or 4 word sentences but tends to miss out verbs but can be understood by me 95% of the time (he can also become very cross and shouts and occasionally hits me when I don't understand him). My fears are like those above, will he be able to read? How will he manage in school? Will he be understood by other children? He goes to Nursery school 4 mornings a week but tends to play independently or silently next to other children. Are there any other UK families out there who can offer me any advice on experts over here? I'm struggling to find anything about verbal apraxia other than CASANA and the many wonderful families raising money in the USA. My son is a very happy, quite extrovert and funny child and my worry is that he will regress and become very introverted when he starts full-time education at the age of 5 here in England. He has no co-ordination problems at all and his speech therapist is baffled by him, as he is not following 'normal' patterns of speech improvement - his progress has been huge but I am still seeking a formal diagnosis. Can anyone help me? Thank you. (Suzy, Callum's Mum).

  8. My Son was diagnosed with CAS at the age of 2 and a half. When I asked questioned to the speech therapist she really didn't have any answers. My main question was is this a mild case or severe, her response was "it's not severe, but is not mild, it's in the middle".
    I have read posted that read a mild case of CAS or severe case of CAS.
    Trent talks all the time and we understand most of what he is saying. The problem is the mumbling in the middle. I think he has a mild case, but I don't even know what the means. If anyone know if different between mild and severe please let me know. thanks

  9. My son Michael was diagnosed with Apraxia around the age of 2 1/2. However, it took a very long time to diagnose him because he couldn't or wouldn't mimic words and he was difficult to work with due to his behavior from frustration. We would go to Speech Therapy 3 times a week and make no headway because he didn't want to work with the therapist. Finally, at the age of 3 1/2 we took him to a behavior specialist for an evalutation. We talked about some of Mikey's behavior (some seemed like Autisic behavior so we had him evaluated for that 3 times!) issues. He would wake up crying and it would take 45 minutes to settle him down. By this time was starting to use some words and had not lost them. Mikey would get upset when we would try to have fun or sing. He would get anxiety when going to school or playgroup friends would come over. He would get so upset over these things it would take forever to settle him down. The behavioral specialist recommended a low dose of Abilify. We DID NOT like the idea of putting our child on medicine and didn't do it. Finally, my husband took a job out of state (economy issues) and I was left with 2 young boys for weeks at a time by myself. Anticipating Mikey's behavior each time we went to the store, play dates, Montessori school drop off time, etc. wore me down. I was starting to get anxiety over his upcoming bad behavior. Once he began to get frustrated that is how the day went. He was impossible to distract or modify his mood. I put him on the medicine without telling my husband. (WRONG, I know but my husband has a pride issue) All of a sudden, I had a happy child who LOVED his friends and told me he loved me and gave me hugs and kisses all day. I had a child that people enjoyed being around now. I had a child that got more progress done at 1 week of speech therapy appointments than he had in MONTHS! His playgroup pals actually wanted to play with him. He made friends at school. EVERYONE noticed how happy he was and how easy going he had become. His therapist was just amazed and when she told me his progress and how he turned around I told her he was taking medication. It was hard to admitt and few people in our family or social circle ever knew. He is 5 now so he has had plenty of time to improve. He is also not on any medication. Now that he has matured, learned to communicate better (he was willing to learn sign language shortly after being put on the medicine)and willing to work with a therapist to learn his words he is doing awesome. There were days in the beginning that I would hand him to the therapist and he would kick, scream, cry and even HIT her. I couldn't believe his behavior because he never hit adults before. I was ashamed in the waiting area in front of the receptionist and other parents. I know now that communication can make a child do things that seem like survival skills to them. He couldn't hear well (3 sets of tubes, constant ear infections) or communicate well. He didn't know what was going on half the time. He acted out for many reasons. I am thankful we have amazing therapist that helped us. It changed our entire lives and made us such a happy family. We could travel on an airplane to see family - knowing he would behave on the plane and while staying with family. He became willing to sit and learn at therapy. He still has a long way to go on speech. Our biggest problem now is Kindergarten is coming up and he is having SERIOUS difficulty learning/saying/memorizing his ABC's and 123's. Everything Mikey has learned has taken hard work so that is what we are continuing to do and hoping it will pay off!