Tuesday, July 14, 2009

Are Odd Wrist Movements, Hand-Flapping, Eye Fixation on Hands Part of Speech Apraxia And What Does It Mean?

Response from Sharon Gretz, M.Ed., Founder & Executive Director of CASANA:
"No, I would not consider these behaviors to be "part of" childhood apraxia of speech. They would be more common as behaviors in children diagnosed on the autism spectrum or with significant cognitive disabilites or sensory disabilities. However, there are children without autism or severe cognitive delay who exhibit what are called motor stereotypies or complex motor stereotypies. In a nutshell, the motor stereotypies usually involve hand or wrist movements that are easily stopped when the child is cued or distracted to a new task. I am not a medical doctor so you would need to investigate this with a professional such as a developmental pediatrician. Here is a good article on the complex motor stereotypies:
http://findarticles.com/p/articles/mi_hb4345/is_10_34/ai_n29321368/ "

Will "Autistic" Like Symptoms Go Away Once A Child's Speech Improves?

Response from Dr. Kathy Jakielski:
"Autism and Childhood Apraxia of Speech are different disorders, although some children may have both. For this question it would be so dependent on which "autistic-like symptoms" are present. For example, if a child clearly wants/enjoys interpersonal interaction but is reticent to interact because of a lack of success getting others to understand due to a speech motor disorder like CAS, that is one thing. In that instance, it is likely that they will interact more successfully and willingly as intelligibility improves. However, if a child actually does have autism or significant "autistic-like symptoms" and apraxia, then EACH part of the child's diagnosis truly needs worked on it and of itself. There is no guarantee that symptoms of autism will be eliminated solely with improved speech intelligibility. It is likely therapy will also involve more than speech therapy and work on things such as social relatedness, language, sensory defensiveness, possibly behavior, etc."

Thursday, July 9, 2009

Ask the Expert - Dr. Kathy Jakielski

We are at the National Apraxia Conference and spent some time asking one of our speakers, Dr. Kathy Jakielski several questions from parents on the Apraxia-KIDS website.

Question: In a Child that presents with both oral and verbal apraxia, what is more important to treat first, the oral or the verbal apraxia?

"If the oral apraxia is such that it is affecting a child's feeding or nutrition, then certainly that should be addressed right away! I would treat the feeding issues in a feeding context. If closing lips to drink is an issue due to oral apraxia, then practicing drinking with a cup (the actual task) would, in my mind, be appropriate. The child should practice doing whatever "oral" skill is needed vs. unrelated oral movements. The same is true of speech apraxia. Speech apraxia should also be treated by working on actual speech. One does not get "treated" before the other. If there is no "functional" problem that the child experiences from the oral apraxia, then working intensively just on speech would be the direction that I would take. I would always be working on the speech, not "waiting. It is not a question of which one would be first then next."

Monday, July 6, 2009

Getting "Control" of My Child's Speech Apraxia Through Educating Myself

[By Natalee Landers, an essay as part of CASANA's Parent Scholarship Program for the 2009 National Conference on Childhood Apraxia of Speech]

I am the mother of three wonderful children. My step- daughter, Ashley is 13 years old and my son, Zachary is five. We also have a three year old daughter named Madison who was diagnosed with Apraxia last year. Her three years have been full of smiles but also many struggles. Within the last 18 months, our beautiful daughter Madison has started to exhibit signs of a neurological problem, to a recent diagnosis of Apraxia. Our family is determined to do everything we can to help her. Unfortunately or fortunately, our views of family and our child have also significantly changed.

We had dreams of Madison breezing through her childhood, finishing high school, graduating college and walking down that aisle. Yes, these are the grand dreams all parents have, certainly without thinking about the day-to-day problems that may enter that “pretty” picture. Needless to say, when Madison did not start to babble like her siblings, I thought, “Um...well, she did have a traumatic birth and has been coddled more than her brother since I have gotten to stay home with her.." so I put the thoughts off. Then when she started to have trouble walking and not saying mama when her peers did, I realized that something was not “right.” I realized we needed to see a doctor, and this started the endless worrying, crying at all times of the day and hoping beyond hope that I was that over-protective mother that her pediatrician called me.

We started seeing various doctors and continued to hold out hope that they would find “something” that would tell us what was wrong with Maddie. Over the last 18 months she has had three MRIs, various cat scans, an x-ray/swallow test, early intervention testing (with no results the first time around), a 30% hearing loss (not bulging ear drums as another doctor reported) and six seizures. Finally, the doctors have said, “There is a problem neurologically (delayed myelin) and we do not know what has caused it but with good services she should be just fine. We do not want to label her just yet, she is too young.” Needless to say the turmoil of not knowing and the waiting has been the toughest on our family. Some days are harder than others. I try to stay positive but often times it is too much to process without getting overwhelmed.

After riding the roller coaster of emotions and searching aimlessly for answers I ran across a website that dealt with Dysarthia and Apraxia. Reading the text, I knew I had uncovered what our baby girl might have. The doctors agree it could be Apraxia, but they don’t want to “label’ her too early. We have been told that she does have a speech disorder instead of a delay as we were told originally. The doctors said that Maddie should be getting intensive speech therapy. My husband and I walked out of that appointment happy and relieved that we finally had something concrete on which to grasp but at a loss for what should we do next. So we put our son, Zachary a bundle of energy, into a three hour a day enrichment child development program so I can devote my time and energy to therapy for Madison. I struggle with the fact that the majority of my day is spent “in therapy” with Madison. Am I taking too much time away from other children? My son is only five and still needs me and if Madison where healthy than Zachary would still be at home with me?” In the same vein, I think he is healthy and developing normally, so he will be just fine....right?

Currently, we see Madison as a child with so much spunk and personality. She is bright and curious about the world around her. She loves everyone and her two big dogs. What tears at my heart on a daily basis is she is trying sooooo hard to communicate. She still grunts and points things that she sees or wants. I no longer keep track of the words or phrases she has used or is currently saying. She is so exuberant when she sees our neighbors that she falls to the ground laughing or runs from them, instead of saying a simple hi. She loves to play with her peers if only she could say, Hi, play with me.” Instead she pushes, shoves or pulls them. Seeing her trying to form words and not being able to do it destroys me and her dad, but we keep going. Zachary has even started to talk for Maddie. I notice when she is trying hard to say something in the car and I can’t see her face or look in the direction of what she is pointing at Zachary will inform me of what she is pointing at or talking about. Her frustration level in just this past month has reached an all time height. She has started to pull her hair out. That was horrendous and frustrating. I just want to make it all better. I have gotten her to clap her hands instead and tell me “mad, mad, mad” although for her it sounds more like “maaa, maaa.”

We do not want to worry about her future and what it could be like. Will she ever talk? Will she be able to interact “normally’ with her peers? Will she have a fulfilling job and future? Are we the right parents for her? Will our other kids be happy with the life we have chosen for our family due to Madison’s medical condition or will they resent us, or worse - her? Being that we are so new to the world of language disorders, I am trying to learn all that I can so I can not only help Madison but educate my family on how our lives will be forever changed by childhood apraxia.

Last June, we were fortunate enough to move back to the United States. Madison has had two more seizures since but is making progress. She currently gets speech therapy, physical therapy, occupational therapy, cranio-sacral therapy, and hippo therapy. It may seem that is a lot of therapy but at this time we are just searching for answers to what will make her language progress. We were fortunate to see a specialist in November 2008 only to be told that Madison didn’t qualify for her program. Not only did she not qualify, but the specialist said that she may be mentally retarded. That stung. We were also told that her oral-motor skills were lacking. I said, "Oral-motor skills what are those and how do we fix that?" So we saw another specialist and for the last six months we have been doing oral motor therapy at home. She is making great progress but for us, it just isn’t enough.

I am concerned with the school system’s lack of knowledge on Apraxia. Even when I gave the team information regarding Apraxia it was meet with a lax attitude. I know that I could become a better "educator", but I am still learning about this disorder.

We are still fighting the battle of how much speech therapy is enough. It took me almost six months to convince our insurance company that she needed intense speech therapy. I had the two facilities pick out and times ready to go; only to be told by the insurance company they would only pay for one facility. So we had work our way in that system. Madison has been getting about 4 days a week of speech therapy and wouldn’t you know it the hospital is NOW instituting policy that they will only see children 1x a week...2x max. I have talked them into waiting until the end of the summer to determine if that is the best plan for Madison. What is so frustrating about all of this is that they see her progress and know that she has apraxia but continue to tell me that the research isn’t there to support intensive therapy. I know they are wrong I see the difference it has made but I don’t have the facts to fight them ... YET!

The future is still scary and unknown. I would have to say that is part of the problem. It feels like Apraxia is a "Word of the Month" disorder and nobody can tell me what her future looks like. It feels as if Apraxia is what autism was like 10 years ago. I feel so helpless at times and realize that the only way to feel “in control” is through education. On my good days I realize that my background in education was meant for a purpose. Even though I received my degree back in 1995 I think it prepared me for what will lay ahead. It at least gave me the “little” bit of knowledge of how the school system works. However, with knowing what I know, I also know when to say, “HELP” I do not know what I am dealing with.

To give my daughter the future she deserves and to help my family navigate this unfamiliar and overwhelming territory, I need to continue educate myself first. Attending CASANA's National Childhood Apraxia of Speech conference would provide this opportunity—an opportunity that would be life-changing for Madison and my entire family.

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.

Thursday, July 2, 2009

How Has Apraxia Affected Us?...How HASN'T It?!!

[By Lisa - essay for CASANA's Parent Scholarship application for 2009 National Conference on Childhood Apraxia of Speech]

There are 3 in our family: John (dad), Lisa (mom) and Patrick. Patrick is a wonderfully bright and comical 9 year old. He's cute, a bit chunky, and tries to be the class clown. Oh...he's also severely and globally apraxic.

How does Childhood Apraxia of Speech affect our lives? How doesn't it? Patrick's apraxia has reshaped our lives forever. We know no other life than "apraxia" and how it has consumed the three of us.

We have met people and have gone places that we never knew existed. We have heard stories of children and their illnesses that we never knew about, nor thought imaginable. Each and every waiting room that we've sat in held some new type of horror story that we were glad we didn't have. Every hospital overnight test brought about another tragic story of "the child in the room down the hall." That night we prayed for "the child in the room down the hall." We were hoping the light of dawn would greet that other child and that we wouldn't hear family members sobbing.

We have slowed our life and lifestyle from an east coast minute to a creeping, methodical mid-western crawl. We have stopped and smelled the flowers at every step along the way and even had to take pictures of them so we would remember what they were called later. We refer to our son as our "$100,000 kid" - this being the amount of money his therapies (and doctors) would cost us by the time he's hit the age that he is currently. I guess, like our nation's deficit, we'll have to revise that number upward now.

We often wonder if we've missed out on so many things that we should have seen our son do already or if we're still stuck in the midst of his "toddlerhood." He says he has a best friend in school ... poor Braden just wants to be a normal kid and run, jump, and play. Patrick just wants Braden to help him run, jump, and play. We've watched other kids grow and develop. We've also watched the look in our son's eyes. We sometimes see a shiny bright light in his eyes, but, at times, we also see a sad, non-responsive look when he just knows he cannot do it like everyone else can.

We've lost so many things. Patrick dreams of grandparents because we no longer see his. Most of them have passed away, but those remaining have disowned us. We'll never be able to explain to him that it's because he's not "perfect" to them. Our adopted Apraxia-KIDS Listserv is now our extended family. They are "our people." Our people that have worn our moccasins; some traveling even farther in them than we have.

We are so lucky. We only have apraxia. We only have sensory issues. Our son is alive and is gaining strength in his arms, legs, speech, and social skills. We aren't the other parents that we spoke to in all of those waiting rooms. We aren't the other parents that have horror illnesses or children with shortened life expectancies. We haven't had to deal with what they have endured.

The best part of our son's apraxia is learning how strong our own personal fortitude can be. We watch. We coach. We sing praises at every chance we can - to him and for him. The tears that we shed are sometimes overshadowed by smiles of joy when he's able to answer a stranger's question. We're proud that he's really trying to wipe his own butt because he really wants a puppy. We know he really just wants a friend and that puppy would be his friend. A friend that would play with him and understand every word.

Where would we be today if our son was "perfect"? We cannot even imagine. We really, truly cannot even imagine. How hasn't Patrick's apraxia affected and changed his life and our lives? After all, what would we have possibly done with that $100,000 anyway?!

Wednesday, July 1, 2009

For Julia... Whatever It Takes

[by Tom K., essay as part of application for CASANA's Parent Scholarship Program for the 2009 National Conference on Childhood Apraxia of Speech]

My wife and I are the proud parents of a six year old daughter named Julia and she has been diagnosed with Speech Apraxia. Julia came into our world as a beautiful baby girl just a few days before the 4th of July in 2002. As Julia grew and became a toddler it became very evident that she was not talking and when she did try to utter words they were very difficult for us to understand. At this point we had plenty of input from parents, grandparents and friends. They all had advice as to why Julia was not talking: Julia was fine, she would talk when she was good and ready. Some advice even went as far to tell us that their children didn’t talk for the first time until they were three or four years of age. In order for Julia to communicate with us during these early stages she would point, jump and make utterances.

I vividly recall a trip to Disney World we took in 2005; at this point Julia was three years of age. We had a great time at Disney World’s Magic Kingdom and when it came time for the “Electric Light Parade” Julia wanted a Mickey Mouse balloon, because we could not understand Julia’s request or realize what she was pointing at in a crowd of people, needless to say the day at Disney ended in tears from Julia. For the very first time we witnessed what a difficult time Julia had communicating even with us.

While we watched and hoped for Julia’s speech to progress I was transferred to as part of a job relocation. This was a major change in our lives. Both my wife and I had never lived away from our hometown but we made the decision to move our family of five. Little did we know that this decision would put us on the path to Julia’s diagnose of Speech Apraxia.

As we settled into our new home, Julia’s speech continued to struggle. My wife Tracie knew that Julia’s speech was not progressing as it should and she took matters into her own hands. My wife contacted the office in our county that dealt with special needs children. After six months of in home visits and a special program at the Area Education Agency (AEA), Julia learned sign language and she was able to communicate a little better. Because the AEA is a state run organization they were unable to give us a diagnosis. This was not good enough for us and so a battery of tests began. Trips to the neurologist, MRI, sleep test, tonsils removed and still the doctors could not tell us what was wrong. We then took Julia to a nearby city for another round of tests in which she was diagnosed with Speech Apraxia.

My wife, who has championed to help Julia continue to strive even though she had Speech Apraxia, would not settle. She knew that other then speech, Julia was developing as all other children her age. Through the AEA, Julia was able to attend preschool through the public school system and received specialized instruction for speech therapy. Julia’s Speech Pathologist Mary Beth was truly an angel in Julia’s life. Mary Beth took great interest in Julia’s disability and worked tirelessly to try and find other resources that we could take advantage of while school was out of session or even after school hours. We could see the dedication that was shown by Mary Beth and the path was now set for Julia to get the help she desperately needed. Mary Beth helped us get a scholarship through the hospital so Julia could obtain extra services in the summer.

When Julia entered Kindergarten we decided to send her to Catholic school. Her new speech therapist was not as enthusiastic about Julia or her condition, and we once again hit a brick wall. The difference this time was that Julia was beginning to know the difference as well. She was having difficulty communicating with her classmates and at time was made fun of. I can truly say that this was one of the hardest times in mine and my wife’s life. Although Mary Beth was no longer working with Julia, my wife called and Mary Beth referred us to a specialized program at a nearby college. Mary Beth was not sure they would have openings but it was worth a shot. The college offered a program through their Communication Sciences and Disorders Department. It was here that we were put in contact with a professor who was an apraxia expert, after my wife’s first phone call she put down the phone and cried. Someone understood and could explain what was going on; we felt hope! This program and the individuals associated with it have been the most significant and inspirational aspects of Julia’s treatment for Speech Apraxia.

Julia attends classes at the college three days a week for twenty minute sessions with a student at the college who is studying to work in the field of Speech Pathology. The program is closely monitored by the professional staff and we and everyone who knows Julia have witnessed a transformation. Julia’s ability to communicate has improved dramatically in the past year and a half. We know now that God has played a role in this journey. If I had not taken the job transfer we would have never found Mary Beth and we would have never found out about this wonderful program at the college. It is expensive to send Julia and I have taken on a second job in order to help defer the costs associated with the program, but no amount of money can be placed on what we have received and the progress our daughter has made. In fact we now joke that Julia is never quiet.

Recently we were asked if we would like to participate in an apraxia research study. We were more than honored to have been asked to participate in this study so that families like ours might some day gain a better understanding of this disability. When ever we are asked to participate we say “YES”! We will do what ever it takes to help others by getting the word out. The college professor and the student's in the program have given us and our little girl the ability to communicate and for that we are grateful. We know we have a long journey ahead of us with Julia but we are also very much appreciative of the progress made to date.