Jake's Journey with Apraxia

Please welcome Suzy, a friend from my local apraxia Facebook group, who is joining us today to give all the details about the recent CASANA conference.  

First I want to thank Tori for asking me to share my experience at the 2013 CASANA National Conference. I have been following Tori for quite some time and always find her blogs to be very informative. When she asked if I would be a guest blogger, I was completely honored and terrified, thinking how would I be able to write about all of the emotions that I felt and discuss all of the topics that I learned during the conference. Well, I will do my best to share some of my highlights.

To begin, my name is Suzy and I am a SAHM to two daughters. My youngest daughter, Megan, age 3 years 9 months, has been diagnosed with apraxia and has been receiving intensive speech therapy for over two years. At 15 months of age she only had a few sounds in her repertoire (dada, baba, bye-bye and hi). My pediatrician told me not to worry, but I knew something was wrong.

During the next 3 months, Megan’s vocabulary stayed stagnant. At 18 months old, I took her for a full speech evaluation. My instincts were correct, her speech was significantly delayed and thus Megan’s speech journey began.

Several months into therapy, the therapist pulled me aside and stated that Megan exhibited all the signs of apraxia, but it was too early for a formal diagnosis. I had never heard of apraxia, but knew I would do anything and everything possible to help my daughter speak and be understood.

It wasn’t until we had gone through many therapists, all proclaiming they were educated on apraxia, and not seeing improvement in Megan’s speech, that I realized changes needed to be made. If we wanted to see significant speech progress, I must become Megan’s advocate. It was then that I became more active in the community and on the social media boards to learn as much as possible about this disorder, more fully understand her rights, and chart out a new course of action.

This past spring, my sister came across the CASANA 2013 conference agenda. She printed and handed it to me, urging my husband and I to go, even offering to watch my girls for the weekend. After reading the different topics being discussed, networking opportunities available, and reading through the presenter’s bios, it was an opportunity too good to pass up! I am so grateful to my sister and her support as this conference experience has changed not only my life, but Megan’s life as well.

Being a first time attendee, I had no idea what to expect other than I hoped to learn more about this neurological speech disorder and how we could better assist Megan in finding her voice. What I quickly learned was that this conference was also about helping me find my voice!

I attended the pre-conference session, which was designed specifically for parents to learn the basics about apraxia from the country’s leading experts. Here I was, sitting in a room with a hundred other parents, all of us sharing the same experiences and having the same desires for our children to speak. As I looked around the room, it was very comforting and emotional, as I was not alone in my journey. For the first time, I felt a strong sense of belonging to these strangers; the bonds of friendship were instantaneous.

Every question that was asked was relevant to my situation. Every comment that was made could have been interpreted as my child.  I knew this was going to be the most invaluable experience in our journey to unlocking Megan’s voice.

Every session I attended was so informative! The leading experts presented the material in an engaging manner and welcomed open discussion. Among the many topics discussed, I enjoyed hearing about the following:

• The latest research on apraxia.
• Learning how multi-sensory techniques enhance learning.
• Cutting edge information on genetics and CAS.
• How to manage the IEP process.

What I found most inspiring throughout the conference was the sense of hope and resolve. In every session, presenters would incorporate videos of children they worked with over the years and showed their progression of speech. Watching a child struggle to speak at age 2, and then listening to them eloquently thank their therapist and discuss future career plans at age 18, left not one dry eye in the room. When tired of the repetitive speech drills and the daily commutes to therapy sessions, I will vividly remember those videos as they gave me a renewed sense of purpose and hope.

The families who volunteered also inspired me. They were so graciously willing to share their intimate speech journeys and it was comforting to have their experience to draw upon for guidance. It was also very reassuring to listen to the young volunteers who have resolved CAS – it was music to my ears to listen to these articulate young adults passionately describe their journey with apraxia! They all are true heroes to me.

Here are some highlights from the conference:

1. You are your child’s main advocator. Your child relies on you to help them…get a correct diagnosis and get educated.
2. Have mile high expectations. The child can say and do more than you think.  Once your child knows what you expect, they will produce! Make sure your therapist is properly trained in this rare speech disorder – if not, find one that is. Be an involved parent! Participate in all therapy sessions – even if it’s the last 5 minutes of each session to understand what your child is working on.
3. Support groups are a must. They provide great resources of information and an outlet to express feelings. You are not alone in your journey!
4. Ensure your child likes their therapist. If they don’t have a good relationship, therapy will not be effective. Don’t be afraid to get out of a bad situation.
5. Use a multi-sensory approach to motivate and engage a child to speak. (i.e.: touch cues, visual prompts, PROMPT cues, sign language, AAC device).
6. CAS children need repetitive practice. Whether it is at the kitchen table, bathtub or in the car, practice is the key to overcoming this diagnosis.
7. Make sure you know your child’s speech goals at all times.
8. The IEP process is daunting and overwhelming, but understanding your rights and responsibilities makes the process more manageable.
9. There is a strong link between CAS and phonological awareness deficits. Deficiencies in spelling, writing, and rhyming can lead to future literacy problems.
10. Lastly, have hope!

Returning home from the conference, I can honestly say that I am a changed person. I think so often people can get in a rut, not being able to look past the trees in the forest on their journey – I know that has happened to me. Luckily, the CASANA conference has given me a renewed sense of purpose and energy. I have more confidence, a greater sense of empowerment, and hope to help Megan overcome apraxia. And, with the education, various resources, and incredible nationwide support network, I know we will be successful in helping Megan find her voice.

If you have to move mountains to attend the CASANA 2014 conference in Nashville, do it! You will not regret it!!!!   Hope to see you next year!!!

Thank you Suzy, for sharing your story with us today!