Is Your Nonverbal Child Safe on the School Bus?

by Sharon Gretz, M.Ed.

[April 14, 2013:  Unfortunately, it keeps occurring.  Today we learn of 3 year old Elliott from Minnesota, who has childhood apraxia of speech, and never made it to school.  His mom thought he was playing and learning but he never made it and when he did not arrive at home on the bus and she called the school, the school said he had not been there. He was found 4 hours later still strapped in the bus in the bus terminal.  We are so grateful that Elliott is safe. Please read the article below and consider what you can do for your child or in your school district to make sure this doesn't happen!]

Two weeks ago we learned of a very disturbing story via the internet about a four year old girl with childhood apraxia of speech who was left unattended and forgotten on her school bus for over three hours. Little blond Ava was unable to yell out for help. Despite school district bus safety policies and procedures, the bus driver allegedly failed to do the seat by seat check that would have located Ava in the rear of the bus. An investigation ensued and shortly thereafter the bus driver resigned.

Ava’s family would like the Apraxia-KIDS community to understand how important it is to ask questions about your school’s bus safety procedures and to ask for a written copy. No one thinks that this can happen to their child, however, on the CASANA facebook page a number of parents are reporting similar stories about their child being placed in unsafe situations. For example, one boy was driven past his bus stop but could not tell the bus driver and was taken back to the school before he was noticed. Another child was crying on his bus but since the school bus driver did not understand his communication, no one knew why or what had happened. And tragically, a similar story occurred a decade ago to another little boy who was left on the bus in the bus garage for hours. On a brighter note, parents on our Facebook page also discussed safety procedures that are in place for their child who is nonverbal or limited verbal.

So the bottom line is this: What can parents to do best protect their child with limited intelligible speech?

1. Make sure that your school district has bus safety procedures in writing and assure that you get a copy of the policy.
2. Inquire about whether your child’s bus driver has had special needs training. Arrange a meeting between school administration and your child’s bus driver to discuss your son or daughter’s communication needs.
3. Include travel safety and transportation details as part of your child’s I.E.P. Transportation is considered a “related service” and so specific transportation details can and should be included when the IEP team has agreed to include transportation for your child. A transportation plan would be a tremendous addition to the IEPs of children who are unintelligible or nonverbal.
4. Communication goals at school and at home should include self protection and self identification goals. Children with communication challenges need a way or need practice with skills such as calling for help (“Help Me”); how to gain someone’s attention (“Hey you!” “Wait!”). These phrases can be incorporated into speech targets or augmentative communication.

Having a child left alone for hours on a bus is easily every parent’s nightmare but is particularly disturbing if the parent is already concerned about a child’s ability to speak out. Careful planning and team work are essential to assure the protection of all, but most of all for the child. 

If you are a parent, do not let your concerns and worries be pushed aside. If you are an educator, be an advocate to make sure that children with no or little speech are kept safe!  For a guide designed for both parents and educators, please read An Overview of Special Education Transportation:A Primer for Parents and Educators.

Emilee's Journey - Never Give Up Hope

[A letter from Emilee's parents and one that brought tears to our eyes!]

Through the years we have enjoyed reading the success stories of fellow CASANA families. At the risk of bragging (Why not? We’re proud parents. That’s our job!), we would like to share our own story about our daughter, Emilee…

In 1998 at age 3, Emilee was first diagnosed with Apraxia. In the fall of 2005 at age 11, we watched with great anxiety as Emilee descended into the jungle of the middle school. Her learning differences, the academics, social issues, and even being able to open her locker, were all things that kept us up at night wondering how she was ever going to survive the fall of 6th grade, let alone the whole middle school experience.

Well, through more hard work than we could have ever imagined, along with the help of some truly wonderful teachers, aids, her family, and a great (small) group of friends, not only did she survive, she THRIVED. At her 8th grade “graduation” last month, we learned that Emilee was one of only 15 students in a class of 168 to earn the President's Award for Educational Excellence for maintaining at least an “A-“ average in every subject for the entire 3 years of middle school. In addition, she was one of 4 girls nominated by her peers and teachers an award, which is given each year to the outstanding boy and girl in the 8th grade. While she was certainly not one of the more “popular” students, her peers and teachers really admired her incredible work ethic and kindness to others. Needless to say, we could not be more proud of her.

For ninth grade, Emilee will be headed to a small private school just outside of Boston. While they do not offer “services” per se, they specialize in a “multiple intelligences” approach to teaching with small class sizes and a learning center to help guide the students along. It looks like it is going to be a great fit and Emilee is very excited.

Our message to those just starting down the path with a child with CAS would be to never give up hope. While this difficult journey to “Holland” (http://www.our-kids.org/Archives/Holland.html) is far from over, there are wonderful stops to enjoy along the way. You just have to watch for them, because you never know when or where they will pop up. Emilee never ceases to amaze us: from speaking when it was unclear how well she would ever speak, to riding a bike when it looked like a lost cause, to thriving in middle school, when we were worried if she would ever survive it. We are looking forward to seeing what the next four years of the journey will bring.

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.

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.