Sunday, November 1, 2009

Beautiful Girl

By Isobel Allen

You’re light has always shined so bright
Even when you lost your words
And we started this fight
You’re light shined bright

Happiness is infectious coming
From such a special child
I struggle to be more like you
Not letting the worry build

They will not misunderstand,
Or get it all wrong
Oh but sometimes they do
Does it hurt me more than you?

I see the words in your eyes
What you want to say with all your might
To join with the other kids
And still your light shines bright

How hard you have worked, what a feat
For such a young life
We will keep on going
Educating all we meet

Someday you will tell us
All your dreams and desires
This I have no doubt
The Joy you give we could not live without

I’ll always be by your side
My heart weighs heavy still as
You’re light shines bright
Our beautiful girl


Tuesday, October 20, 2009

Small Seeds Watered with Tears


[Written and delivered at the 2009 Pittsburgh Walk for Children with Apraxia of Speech]

by Sue Freiburger

When I look at Sean, it is hard to believe how far we have come in the past six years. He has grown in so many ways and achieved so much more than we had ever hoped for.


I want to share our story with the parents here with young children with apraxia. Sean’s apraxia was so severe that after a year of speech therapy thru early intervention, the only sound we had was “eh”. We discovered CASANA when Sean was around two and a half years old and began really aggressively pursuing intensive specialized therapy. We came to Pittsburgh to have Dave Hammer evaluate Sean and confirm the diagnosis of apraxia. My expectation was that we would leave with a treatment plan and a new direction. I was very hopeful that this would be our turning point.


After a two day evaluation, Dave sat down with us to review his results. The results were not good. Dave said that he was unable to stimulate any speech production from Sean and that at best, he could confirm a suspected severe case of childhood apraxia of speech, with a suspected underlying genetic condition. His prognosis of Sean every becoming a verbal communicator was poor. I held back my tears as I felt my world collapse beneath me. If an expert like Dave didn’t think that Sean was likely to ever be able to talk, where would we go from here?


As we got into out car, the tears started to flow. I knew that I had to pull myself together before we got back to the hotel room where my mom waited with our other two children. Eric had spotted a garden center across from the speech therapy center and thought that could be a diversion for both me and my mother. He suggested I pick out a special plant for her to thank her for coming to Pittsburgh and helping us out during Sean’s evaluation. I was drawn to a small lily plant that was very fragrant. I could explain my red eyes away by saying the flowers had aggravated my allergies...


My mother took the plant home to NY and planted it in a special spot in her front garden. We took Sean back to VA and began our search for a speech therapist who could offer us the intensive specialized therapy that Sean needed. We also began to investigate augmentive communication devices.


It was a long year, with many visits to specialists, long battles with the school system, and about nine hours of private therapies a week, but the following summer, Sean was successfully communicating using his Dynavox Augmentive Communicative Device. That June got a call from my mother telling me that the “Mr. Hammer” lily was in full bloom and it was spectacular.


Due my husband’s job transfer, we ended up moving to Pittsburgh that summer. Unfortunately, there was a long waiting list to get into speech therapy with Dave Hammer, but we kept plugging away. Sean slowly began to find his voice, starting with "Polamalu" when he was around four and half years old and is now quite the talker (and still a huge Steelers fan!)! After almost a year, Sean was able to start therapy with Dave Hammer and Dave couldn’t believe that this was the same little boy he had evaluated almost two years ago. We worked together as a team with Mr. Hammer and Sean continued to thrive. The “Mr. Hammer” lily is around eight feet tall and continues to remind us how far we have come from the day when we felt that all hope was gone.


Over the years, I have spent many hours in my garden, using it as my therapy to work out my frustrations with the long slow process of helping Sean to find his voice. Many of my plants have been watered with tears, but each year, they come back stronger and bigger than ever. Dave Hammer sometimes wonders if he should have given us such a grim prognosis at the evaluation, but we both know that it was a fair evaluation. Without his honest assessment, we never would have know just how hard we would have to work to help Sean find his voice. We would have accepted the school systems assessment that a three year old couldn’t use a high-tech augmentative communication device. We would have waited and waited for the words to come. The path we had to take was a difficult one, the work was hard, but Dave has given us a gift that we can never repay. Sean now has a voice and I have an enormous garden! We dug up a piece of that “Mr. Hammer” lily and split it – a piece of it to grow in my garden and a piece for Mr. Hammer to plant in his yard.


I collected seeds from the flowers in my garden to share with the other parents today. Scatter these in your garden to remind you that from small seeds, beautiful and wonderful things can grow. Let your tears flow on the days when things are tough, but hold on to hope.

Wednesday, September 30, 2009

Mississippi River Apraxia Challenge (MAC Ride) and Tom Welge Solidify Choice of Speech Language Pathology Careers

by Ellen Groh & Lindsay Croegart

In the beginning hours of daylight on Sunday morning, September 20, 2009, a brave and driven group of men hopped on their bicycles to begin a 585-mile bike ride to raise funds and awareness for childhood apraxia of speech. Being the parent of a child with apraxia, Mr. Tom Welge made a commitment to bring support to a cause very close to his heart.

The students and faculty in the Department of Communication Sciences and Disorders at Augustana College in Rock Island, Illinois wanted to welcome Mr. Welge and his crew to our campus for fun, food, and a little time away from their already-muddy bicycles. Mr. Welge’s cause is also one of our own causes and we had a desire to show our support. Students welcomed the Mississippi River Apraxia Challenge (MAC) Riders and presented them with not one—but two—checks. With the help of many students, $600 was raised to donate to CASANA in honor of Mr. Welge and his crew’s expedition. Augustana students were not the only ones to donate; the Benisch’s (whose young son attend the Augustana Center for Speech, Language, and Hearing) also raised $510 for CASANA.

After receiving our donations, Mr. Welge asked if he could speak to us and began to warm each of our hearts by providing thanks and appreciation to professors, advice and support for parents, and a certain validation for each student standing in the crowd. Mr. Welge thanked the 100+ Augustana CSD majors not only for the picnic and donation, but also for choosing a self-less vocation. His gratitude (for our participation in the MAC Ride ‘09 event and our career choice of CSD) was expressed as he thanked the students, mentioning his own family’s positive experience with speech-language pathologists. As he began to well with tears, so did many of us. Mr. Welge generously expressed his excitement of having the Augie students standing there on the picnic lawn as representatives of the upcoming generation of professionals in the field of CSD.

Making decisions that affect the rest of your life is daunting; choosing a major and future profession is no different. When I (Lindsay Croegaert) began my first CSD class at Augustana College, I realized my interest in the field. Despite my passion for CSD, worry began seeping into my mind: What if there is a better profession out there for me? How will I ever know whether I chose the right career path? Although I felt anxiety over choosing CSD as my one and only major, I was still excited to finally start my classes in the department. I jumped at the first service-learning project opportunity—MAC Ride ’09. During Mr. Welge’s emotional speech expressing his thanks and gratitude to the students, my doubts disappeared. I was no longer worried about my intended major—I no longer had any reservations. In addition to completely removing doubt about my choice as a major here at Augustana, Mr. Welge also reminded me that the education I’m currently receiving isn’t just about earning a degree. My preparation and education here at Augustana are stepping stones that will help me help others. The career and the life that I’ve chosen for myself benefits so many more people than just me. I can’t thank Mr. Welge enough for his thoughts and words. He and his team inspired and validated each of us through their motivational message more than they’ll ever know.

I (Ellen Groh) am a senior this year at Augustana. Amid the stress of finishing my undergraduate degree and applying for graduate school, I rarely am able to imagine my life outside the world of education. Yet listening to Mr. Welge speak, I became able to envision the life I will lead when my last three years of school have been completed. Mr. Welge helped remind me how powerful my job will be as a speech-language pathologist. I will care, teach, love, and help individuals every single day in my profession. After meeting the MAC Riders, I again could see the bigger picture. We really will make a difference—students, SLPs, families, professors, and professionals working together as one. The MAC Ride event helped to instill the idea that we are one big team, reaching for an even bigger goal. As CASANA’s motto states, “Every child deserves a voice.” I am touched and truly blessed to be part of a team that makes the voices of children heard.

Ellen Groh and Lindsay Croegart

Augustana College, Rock Island, IL

Communication Sciences and Disorders Classes of 2010 & 2012