By Leslie Lindsay
I am so honored by the generous apraxia moms who have reached out with their stories on apraxia. Everyone’s experience with childhood apraxia of speech (CAS) is as unique and individual as their precious child and this story from Jennifer, mom to Gavin illustrates not just differences–but also similarities–those milestones we hope to hear, the questions we ask, and the overall outcome of having a healthy, happy child.
Here she is in her own words on how to navigate the (sometimes) bumpy road of apraxia, seek the best therapists for your child, and how to measure success.
**Searching for the Truth in our Journey with Childhood Apraxia of Speech**
By Jennifer Helm
Our family has been on a journey the past few years – searching for the truth in our journey with childhood apraxia of speech.
Our son did not babble as a baby and his cry was so faint that it could barely be heard. During the first years in life, he missed all of his milestones – holding his head up, sitting up, standing, crawling, and walking. If it was in a baby’s first year book as a milestone, it was considerably delayed. We knew early on that his development wasn’t typical and were referred to early childhood intervention services. From the day he was born (and after a normal pregnancy and delivery), our lives took on a new meaning as we began to search for the truth.
In the preceding decade before our son was born, my husband and I traveled, developed our careers, and devoted energy to ensuring we were fully ready for the commitment of children, both emotionally and financially. By the time I became pregnant, we felt that we accomplished our pre-family goals and were set for the next chapter in our lives. While I like to think that some of that planning and maturity helped us to embrace our new norm that was many miles from our preconceived notions, I do not know. I do know that our lives quickly became consumed with the medical world and specialist visits to neurologists, geneticists, developmental pediatricians, cardiologists, craniofacial specialists, and speech therapists, to name a few. These were our new friends and this was our new world, all in search for the truth.
At varying times in our journey, we were faced with suspected diagnoses ranging from autism, a serious mitochondrial disorder, and a host of rare syndromes with long and complicated names. Our world quickly became a roller coaster ride and it was clear we weren’t getting off anytime soon. The pursuit for the truth was always and never ending. In our world, one week might consist of us determining that our son was fine and that we were just paranoid and overprotective parents. “Maybe we’re just a little too informed for our own good”, I recall thinking. The next week might consist of a dire test result, bleak doctor visit, or grave expert recommendation that led us into a delirium of all night Internet searches and tough conversations in a world of dashed hopes and dreams.
One thing was crystal clear to us though. We were incredibly blessed to have such a beautiful son. His loving, sociable, and cheerful spirit was amazing and he began to transform our lives in a way that was inconceivable to us before he arrived. He was such a joy and we were beyond proud to be his parents.
During our journey, it was apparent that he understood everything being spoken to him and was extremely bright. His words just seemed to be stuck in his head. He tried so hard to talk but his mouth just wouldn’t release the words. We resorted to sign language, an augmentative device, a picture exchange system, charades, and pointing as he was always equipped with an army of tools to get his point across. I can’t even begin to imagine what it’s like to know what you want to say but not be able to physically get the words out. His thoughts were locked in his head and we were amazed on how he handled his struggle with such grace.
Finding the Truth:
There were so many doubts at so many times. Did he have a normal speech delay? Was he just a late talker? Einstein didn’t talk until he was four – which my husband and I heard from well-meaning friends, family, and acquaintances it seemed like a thousand times over the course of our journey.
At 3 ½, our son was officially diagnosed with severe childhood apraxia of speech (also known as CAS). CAS is a neurological speech disorder where children have problems saying sounds, syllables, and words. The brain has problems in the planning processes of moving the body parts (e.g., lips, jaw, tongue) needed for speech. Our son knew what he wanted to say, but had difficulty coordinating his muscle movements necessary to say those words.
We finally found answers to the elusive mystery that held a tight grip on our lives for so many years. I am not sure why but we somehow mistakenly thought that an official diagnosis would mean so much more than it actually did. It’s hard to explain but it’s almost anti-climactic in a way. Could we rest now that we found the truth? Was this the end of our search for the Holy Grail? The answer was a big resounding NO as the work was just beginning.
With our son’s diagnosis came a feeling of satisfaction as we now had a community for which we could identify, but we certainly weren’t shouting from our rooftop with joy. We held onto the hope for many years that his struggle was just a normal speech delay, and the door to that hope was now closed. We were now officially faced with a severe communication disorder with many challenges that lie ahead.
Our son will turn five this summer and we still have many questions. Will he ever talk so that people can understand him? What will be the best school environment so he will thrive? How will he cope with knowing he is different? How will others treat him?
Questions like this keep us up at night. We’ll figure it out, and it will all be ok. We are not alone in our journey and there is much comfort in that.
Words of Advice to Other Parents:
Although our journey with apraxia has been short lived compared to others that have struggled with this disorder, I would like to offer a few points of advice for parents that may be searching for their own truth.
- No matter how much you are doing to help your child, you will ALWAYS feel like you are not doing enough. That is ok and it’s normal to feel that way. Don’t feel guilty as we are all human. Enjoy time with your child and know that answers will come eventually.
- It really does take a village to raise a child. We moved over 1300 miles to our hometown because we knew we couldn’t raise our son without nearby family. We needed help. Gavin’s success is due to the people in his life that care so deeply for him. We are so blessed to be surrounded by great family, friends, teachers, therapists, and so many others. Finding and assembling a support network is important, takes time, and everyone contributes in a unique way.
- It is inevitable that people will say insensitive things about your situation. Most of these expressions aren’t meant to be wounds and are paved with good intentions. Keep in mind that no one has walked in your shoes like you haven’t walked in theirs. If someone says something that is hurtful, forgive them and move on. You’ll need that extra energy to focus your efforts on what matters most to ensure your child’s success.
- Conduct your research but don’t let it consume your time. My husband and I are both savvy researchers and this was helpful in our journey. We had to be cautious though and recognize that spending endless nights on the Internet excessively searching can be overwhelming. Think critically and know the trusted resources for information as there is both good and bad information to decipher through about apraxia on the Internet. The Childhood Apraxia of Speech Association of North America (CASANA) is a great organization that serves to raise awareness and provide resources for families, researchers, and professionals http://www.apraxia-kids.org/. They maintain a library of trusted information that includes articles, videos, and webinars. They can also help you seek networking opportunities, including sponsored walks across the nation which are a great way to support apraxia and meet other families.
- Find a good speech therapist. There are experts equipped to help your child achieve success and there are also many that are not trained to deal with apraxia. Speech therapy for CAS children is highly specialized and therapeutic interventions are typically different than techniques used with other speech delays. If you don’t have access to a trained therapist, there are training and educational opportunities available that CASANA recommends for families and professionals.
- Measure progress slowly and celebrate one day at a time. When our son learned to say, I wub oo (I love you), we were on cloud nine for weeks. It took many months of work for these three precious words to come. After years of prompting him to speak, he is beginning to imitate others with approximations and words. This is a HUGE accomplishment for us. While the progress may seem slow to outsiders, it is often monumental. Celebrate those triumphs and relish in the hard work it took to achieve those outcomes.
Bio: Jennifer Helm is an academic administrator with more than 15 years of experience in online learning and higher education. Jennifer is the Dean and Vice-President of Institutional Research and Assessment at the American Public University System. She holds a Ph.D. in Educational Psychology from Texas A&M University and a Bachelor of Arts degree in Psychology from the University of North Texas. Jennifer lives in the Dallas area with her husband and son where she enjoys spending time with family and traveling. Jennifer can be reached at email@example.com or through Twitter @jenstephenshelm
For more information on childhood apraxia of speech (CAS), ways you can help, cope, find a diagnosis, and more, please see SPEAKING OF APRAXIA: A Parent’s Guide to Childhood Apraxia of Speech, an award-finalist book available thru Amazon, B&N, and Woodbine House. Also available in Kindle!!