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.

He'll Talk When He's "Ready"... Not Exactly

[By Angela Brown; submitted as part of application for CASANA's Parent Scholarship Program for the 2009 National Conference on Childhood Apraxia of Speech]

The words “I do” can mean something different to so many people. In many it may spark the image of a bride and groom.  For people who have children with Childhood Apraxia of Speech, it may be a phrase that their child is able to say clearly after years of speech therapy.  When I was pregnant with our son, I remember watching "Good Morning America" during National Autism Awareness Week and being struck by the ratio of boys compared to girls with Autism.  I felt so scared to have a boy.

 

Andy was born a healthy boy, weighing in at 7 pounds 15 ounces, just like his sister.  At 15 months, Andy said “bye bye” and we were so excited, I remember that day as clear as it was yesterday.  That was the last time I’ve heard it said that clearly.  Looking back I also recall how excited we had to get him before he could get the words out of his mouth.  Things seemed to progress normally and then we noticed that Andy’s walking was unstable and he kept falling.  We came to learn that he was Hypotonic, which means basically low muscle tone.  But what people need to understand is how much being hypotonic can affect your entire body.

 

My husband and I yearned to hear the words “mommy and daddy” and they didn’t come.  Andy was able to say a few words such as; truck, cap, sock and shoe.  But eventually we no longer heard those.  We watched him play and knew he understood what we told him but he just seemed to babble back at us.  People thought it was cute and kept saying he’ll talk when he’s ready.  I guess in my heart I knew it was more than that.  We turned to our pediatrician for help and were referred to speech therapy.  After meeting Andy’s speech therapist, Anne, I knew she was a fit for him.  He seemed to bond with her and she helped us understand exactly what Apraxia could mean.  We met for two or three sessions to have Andy evaluated.  The diagnosis was severe Childhood Apraxia of Speech, also one of the most severe Anne has seen.  Basically here’s where our journey begins.

Our first born, Madeline, I am convinced was born talking and hasn’t stopped since then.  I began to notice that Andy “talked” as much but we just didn’t know what he was saying.  Out of frustration, Andy began to bite and hit.  Here’s this little boy trying to get us to understand and we just weren’t able to.  It was one horrible fit after another.  My daughter got the majority of the biting which still makes me feel horrible.  I believe in Andy’s brain, that when he was babbling to us he was hearing what he wanted to say but what came out of his mouth was completely different.  I would dread taking him places because he was like a super ball in a room and then add the fact that he wasn’t able to tell me what he wanted. 

When Andy was about 18 months old, I kept waiting to hear him call me mommy.  If he was very upset or worked up about something he would call out mama.  People constantly said, "Don’t worry; he’ll talk when he’s ready."  What we didn’t know was that Andy was ready to talk but physically he wasn’t able to.  When I’ve told people that Andy is able to understand just about everything you say; he’s just unable to communicate back with his voice.  I’ll be signing a few things to Andy and I have had people tell me, "Well he looks normal."  That’s when I tell them that Apraxia doesn’t have a face.  It truly affects more than an individual person.  We try to make it an open topic within our lives.  A few times when Andy has had meltdowns and I don’t understand why, I’ve had people look at me and stare.  On the flipside, being so open has helped two of my friends from high school get help for their children.

 

Everybody wants the best for their children.  But when one of your children has a problem the balance can be harder to maintain.  Our daughter is very aware of her brother’s lack of speech, what she never forgets is that he understands almost everything people say.  Having a son that has a special need has made my husband and me more aware of everything.  When I tell people about Andy I never say there’s something “wrong” with him.  There’s nothing wrong about him, he has trouble forming words is all I say.   

Having a child with apraxia of speech has made me see the genuine goodness that people have and it’s also shown me the epitome of ignorance in society.  For as difficult as a single day could be, we don’t know any other way.  Honestly, I can’t even imagine what it would be like to have two children talking like my daughter does.  We laugh about it and make jokes, but we pray for it every day.

   

Andy recently celebrated his fourth birthday and it was special.  He was able to blow out his birthday candles!  It was very exciting for my husband and I, as well as, Andy.  If you asked me at age 22 would I ever cry at the sight of a boy blowing out a birthday candle, I’d probably tell you no.  It was great!  

Nobody ever really knows what life brings.  I’m fascinated by the way children are taught in speech therapy, all the different things to help lessen the burden of Apraxia on a child.  Watching Andy go from Speech to Occupational Therapy or Physical Therapy on a Monday afternoon just amazes.  Some days there’s drastic improvement and other days, it seems like he’s regressed.   At home, most of Andy’s play is based on his therapies.  I don’t know many 4 year olds that hang from a chin up bar in the basement for fun.  We often put small objects in rice to help with Andy’s sensory issues.  I always say, rice is the new Play-doh!  It’s funny to see the expression people get when they come over in the winter and we’re blowing bubbles.

 

I’ve declared this the summer of fun!  After spending almost one year of doctor appointments ruling out Muscular Dystrophy, cardiac problems, neurological issues, genetic issues, vision and hearing problems, I think my family deserves it.  Rather than running to a doctor's appointment, I try to make it a few hours at a park. One day my hope is that I’m standing watching my kids playing and Andy will stand up and say something like, "How am I doing mommy?"  I also wonder how many things Andy will be able to tell me that his sister does and blames him!  Either way, I look forward to both!

 

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!

Somewhere Over the Rainbow - How Childhood Apraxia of Speech Affects the Life of My Child and Family

By Christa Stevens

[An essay in support of the scholarship application for CASANA’s 2009 National Conference on Childhood Apraxia of Speech]

One of the most memorable scenes from the classic film The Wizard of Oz is definitely the magnificence of the Emerald City. Remember how the Wizard requires all inhabitants and visitors to wear green-tinted spectacles? The view that these glasses offered made the Emerald City magical to Dorothy and her traveling companions, but it also distorted their vision and intensified the power of the Wizard over their lives.

Just like those green-tinted spectacles, my family’s vision has been totally jaded by our Elinor’s diagnosis of severe childhood apraxia of speech. The diagnosis has colored every aspect of our lives. To have a child who is entirely nonverbal has fundamentally changed how our family functions and experiences the world. To have a child who is nonverbal – but maybe isn’t doomed to be – if the “right” treatment decisions are made and implemented – is both overwhelming and debilitating.

To help conquer the powerful force of CAS my husband and I have changed our professional paths. He left behind a job he enjoyed and found fulfilling and aggressively sought out a new but extremely challenging professional opportunity to provide additional financial resources for our daughter’s therapies. I quit working full-time so that I can be my daughter’s full-time advocate. Elinor is extremely vulnerable because she cannot communicate that she is hurting, scared, or worried. She cannot tell me how the people that she is in contact with at school, for instance, treat her or make her feel. I have had to become an expert in reading her body language and monitoring her habits and behaviors. Her teachers, therapists, even her school bus driver, know that I am going to ask a lot of questions about her time with them. These actions have required my husband and me to be very assertive and step way outside our comfort zone. Often we could easily identify with the Cowardly Lion in the Wizard of Oz and feel desperately in need of the courage it takes to provide for Elinor’s special needs.

And just like the Scarecrow in the Wizard of Oz, I have had to put in a request for some additional brain power so that I can wade through the research and technical materials that help me understand my daughter’s diagnosis. The treatment options are vast and complex and I have spent countless hours researching the effectiveness of a variety of interventions such as hippotherapy, music therapy, nutritional support, ASL, AAC devices, and speech therapy methods. Furthermore, although I have no formal training in speech therapy, when one considers all the hours I am spending with speech therapists as they treat my daughter and the time I spend at home working with her individually, I may just end up being able to pass the state SLT licensing exam.

Sadly, the time that must be spent on Elinor’s special needs limits the time that is available for other activities. For example, I don’t cook for my family the way I would like and our house is often a mess. Elinor’s younger sister spends longer days at preschool than we would like but we feel it’s better that she be at school than sitting in the waiting room at therapy offices while Elinor gets treatments. I hear other women talk about scheduling “date nights” with their spouses and I remember the last set of “date nights” my husband and I had: six-weeks of evening ASL classes so that we could help build Elinor’s signing vocabulary. Right now we are considering taking our girls on their first family vacation but we don’t know if it would be wise to use the financial resources that way or disrupt Elinor’s therapy schedule.

Without a heart, the Tin Man in the Wizard of Oz was spared the persistent and unrelenting heartache that my husband and I feel as we deal with the severity of Elinor’s condition. We watch – and try to figure out our role – as other children come up to her and try to engage her in conversation and often end up walking away when Elinor is nonresponsive. We listen to other parents relate humorous stories about their child’s verbal precociousness: silly questions, grand storytelling, and energetic dialogue. Elinor’s little sister’s speech is developing normally and even this has been a bittersweet experience as we see how easily she produces sounds and can’t help compare her fluency with Elinor’s unrelenting struggle to produce verbal speech. And we feel desolation as we think that both sisters are missing out on developing the complex and intimate sibling relationship that is supported by spoken language. Our hearts beat fast as we rush Elinor through a hectic schedule to get her access to the educational and therapeutic experiences that she needs. And guilt weighs heavy on our hearts as we look back over the day and think of all the missed opportunities where we failed to integrate various therapeutic techniques into the daily tasks of family life. Our hearts are heavy and tired and have broken time and time again because of Elinor’s condition. But we just keep mending them and trying to find a safe place and way to grieve and then rejuvenate ourselves for the work that still needs to be done.

With childhood apraxia of speech, there is no magic answer – no set of ruby slippers – that is going to instantly cure our daughter of her severe language disorder. Our family is facing years and years of therapeutic interventions, an increasingly heavy financial burden, mind-numbing research, agonized decision-making of choosing among treatments, and long tedious work of implementing treatment plans. Even though we regard the world through the tinted spectacles of CAS, we are trying not to be permanently distorted by the view. We try to be honest and realistic about the journey that lies ahead for our family while still appreciating the marvel and magnificence of parenting our amazing and delightful daughters. We know the yellow brick road of parenting a child with CAS has taken us – and will continue to take us – down some difficult and troublesome paths. Although we cannot see what lies ahead or how long our journey will take us, we can clearly imagine our beautiful and enchanting Elinor impersonating Judy Garland as she sings:

Somewhere over the rainbow
Skies are blue,
And the dreams that you dare to dream
Really do come true.

We are getting ready for the National Conference on Childhood Apraxia of Speech

Welcome to The Apraxia-KIDS Blog

Welcome to our Apraxia-KIDS Blog! I'm hoping that the blog will become a regular stop in your internet travels.

We are currently incredibly busy as the National Conference on Childhood Apraxia of Speech is approaching in just 2 1/2 weeks. One of the tasks that was recently completed was awarding the parent scholarships. We are so grateful to Morrison & Foerster, LLP who made the gracious donation that allowed us to provide partial scholarships to 12 parents. As one requirement of the scholarship application, parents needed to submit an essay about how everyday life is affected for kids with apraxia and their families. There were many fantastic entrys and we will be publishing several of them here. I'll be anxious to see if you can relate to the stories families tell.

One thing that the essays reminded me about was the intensity of each day for families struggling to help their child. Whether it is feeling totally baffled by the "words" and terminology being thrown at them or reaching deep to become master's of time management, parents report that most areas of their life are affected. It really is quite striking and an important reminder of the need families feel for support in their lives.

Thanks for reading and please look for much, much more in the near future!