Meet the Apraxia Kids Outreach Coordinators!

As Apraxia Kids grew, we knew we needed to develop an understanding of the needs of local communities to improve our resources and have a local presence. In December, 15 Outreach Coordinators attended a training in Pittsburgh and have since been working to raise awareness and offer support in their communities. We are pleased to introduce this elite group of volunteers who will help shape the future of our organization!

 

Pooja Aggarwal – Virginia

What is your connection to childhood apraxia of speech?

I am a Speech-Language Pathologist who specializes in working with children with Childhood Apraxia of Speech. I am a graduate of the Apraxia Kids Intensive Training Institute and am recognized by Apraxia Kids for Advanced Training and Clinical Expertise in Childhood Apraxia of Speech.

Why was becoming an outreach coordinator important to you?

Becoming an outreach coordinator is important to me in order to be able to help share evidence based information.  In other words, I believe every child should have access to the highest quality of therapy and I know that begins with therapy that is rooted in what has been proven to work!

My hope is that in committing to volunteering my time I will be able to help share information with my Speech Language Pathologist colleagues that will improve outcomes for children with CAS. Similarly, I hope to share knowledge with families so each parent can make informed choices to help every child find their voice!

How can people in your community get involved?

Community members can get involved in upcoming parent and professional support groups, volunteering and participating in the Walk for Apraxia, and sharing their voices on the Apraxia Kids Virginia Facebook group.

 

Kim Cotton – Colorado

What is your connection to childhood apraxia of speech?

My beautiful 2 year old little boy with big blue eyes wasn’t speaking at all. After months of being told not to worry, that he was “just a boy” and he would talk when he was ready, or completely offensive things like maybe if I talked to him more then he would talk, I finally took him to get a speech evaluation at Children’s Hospital when he was 2.  He was diagnosed with severe childhood apraxia of speech. It brought every stage of emotion that a parent can go through when you realize your child can’t tell you anything they are feeling or thinking and that there is a very long and difficult road of therapies just to try to do something that most children do so easily…speak! I started out so clueless and terrified and I felt totally alone. Over time, I have found my tribe, and equipped myself with a wealth of knowledge, and my son is finding his voice.

Why was becoming an outreach coordinator important to you?

Becoming an outreach coordinator was really important to me because I wanted to see awareness and acceptance in this world for my son, and I didn’t want any other family to feel the way that I felt when we first received his diagnosis. Families will still have to struggle through all of the phases of grief but at least they won’t have to feel so alone while they go through it. I can help families find their tribe and equip them with the necessary information and resources they need.  I want to teach the world about what my son has so that it lessens the stigma of the unknown!  It’s crucial to me to help properly educate the professionals that help all of our children with apraxia to speak.

I hope to help create a community that knows what apraxia is when you tell them. I want it to be an understood speech disorder especially within the professional speech language community and within the schools. I want children to get the needed help within their IEP’s at school that should just be a given with a child with apraxia. I want insurance companies and doctors to understand what this disorder is and what these amazing children need so that children actually get diagnosed early and then get the services they need to receive covered under insurance.

How can people in your community get involved?

Professionals in the Speech Language field and medical field and schools can get involved with the trainings about apraxia. Educate the masses! Watch the On-Demand Webinars on Apraxia-Kids.org! Families can contact an outreach coordinator nearby and get linked up with a wealth of resources and support! Please join a walk team for your local Walk for Apraxia if you know someone in your community with apraxia to show them your love and support. Talk to your kids about this disorder so they can demonstrate love and inclusion for these amazing kiddos!

 

Maureen Elia – Illinois

What is your connection to childhood apraxia of speech?

My son Greyson, who’s 4, has CAS.

Why was becoming an outreach coordinator important to you?

Becoming an outreach coordinator was so important to me because Apraxia Kids served such a pivotal role in our journey. I wanted to help other families in my community by helping them find and utilize the resources that Apraxia Kids has laid out for us. If I can help just one family either find their perfect SLP or give them hope and show them they aren’t alone, then I will have been successful.

I really want to increase the personal interactions among the apraxia community in my area. The link between professionals and families as well as the relationships between families is SO important on this journey. I’m hoping to help facilitate those partnerships, thus strengthening our community.

How can people in your community get involved?

Join our FB page, Apraxia Kids Illinois, to stay up to date on all the latest resources and happenings in Illinois. Share your story, reach out to other families, and increase the partnerships within our communities.

Then help us spread awareness. Both through awareness activities in May, advocacy, and through the walk, join us in educating the world about what apraxia is and how hard our children work to communicate. The more acceptance we have, the more resources (supportive and financial) will be available to our children.

 

Shelley Kelley – Oklahoma

What is your connection to childhood apraxia of speech?

I am the mother of a 10 year old little boy with apraxia.

Why was becoming an outreach coordinator important to you?

I will never forget the feeling of isolation when my son was diagnosed.  My husband and I, nor anyone we knew had ever heard of childhood apraxia of speech.  We felt as though we were all alone.  I don’t want any other family in our community to have that feeling of loneliness.

I hope to provide support and raise awareness.  In doing so, I hope to never again hear the words, “Apraxia?  What’s that?”

How can people in your community get involved?

Learn about apraxia, and spread the word.  If someone you know has a child that is struggling with speech, encourage them to get an evaluation as early as possible.  Early intervention is key.  Support and participate in community events such as national awareness day and the Walk for Apraxia.

 

Trish Mayro – Pennsylvania

What is your connection to childhood apraxia of speech?

I am a speech-language pathologist and Apraxia Kids “Bootcamper” (2018).

Why was becoming an outreach coordinator important to you?

I was a professional who “didn’t know what I didn’t know” about CAS. Encountering children who needed me to be better at what I do helped me to focus on getting better at providing therapy for kids with CAS. Now, I want to inspire fellow SLPs to expand their knowledge and skills, and also help families of apraxia stars connect with good resources to help their kids. Every child really does deserve a voice!

I want my community to be able to tap into a “network of care” where knowledgeable and helpful professionals and experienced families can guide and provide support to families and professionals new to the apraxia journey. I see my role as building the connections to spread this “network of care” by connecting people to each other and to the resources provided by Apraxia Kids.

How can people in your community get involved?

People can start wherever they see a need or have a need. That might mean joining the apraxia support group in their area, volunteering to help out with the local Walk for Apraxia, accessing great information from the article library and webinar platform at the Apraxia Kids website, or by just spreading awareness about CAS in their own personal interactions with other families and professionals.

 

Patricia Miller – Connecticut

What is your connection to childhood apraxia of speech?

My son was diagnosed with CAS when he was four years old.

Why was becoming an outreach coordinator important to you?

Apraxia Kids saved my life. When my husband and I were battling the school district looking for answers that they would not help us find, we met with a developmental pediatrician that heard our son speak for ten seconds before she said he has apraxia! Finally an answer to our questions, but then I had more questions that needed answers. As I searched for information about apraxia, I found the Apraxia Kids website. I literally did not sleep that night because I was up reading, watching webinars, connecting with the Facebook page, and realized I finally know why my son cannot talk. Fast forward ten months of grueling PPT meetings, evaluations, and private speech therapy, I was preparing to attend my first conference July 2018. The only person I knew was our private speech therapist, but as I walked into the meet and greet, I felt as if I was at a family reunion; I was home. The relationships I have made and continue to make has saved my life. Apraxia Kids has saved my son from being incorrectly labeled and possibly would still be nonverbal. Apraxia Kids has saved my sanity and strengthened my relationship with my husband and friends. Apraxia Kids gave me hope when I lost it. I never want another family to endure the pain and suffering we went through. I will make it my life’s mission to bring awareness of CAS, help make change in special education, and ensure all of our stars and their families have the support I found when I most desperately needed it.

I hope to bring awareness of CAS to the east coast and see change in special education services especially for children with CAS.

How can people in your community get involved?

All they need to do is ask and I will do everything in my power to help them find the resources they need. Joining the Facebook pages, attending the conference, attending a walk, try out the webinar platform, or simply pass out information to their school or pediatrician. Every little bit helps.

 

Laura Moorer – Texas

What is your connection to childhood apraxia of speech?

I am a Speech Pathologist and about 10 years ago, I attended a conference on the brain and heard about CAS for the first time.  I did a little research and workshops and was very interested in it.  Then a couple of years later, a three year old child came into the Speech, Language and Hearing clinic at TWU where I was the director to have his hearing tested because he was not talking.  The audiologist wanted me to meet the child and mom because she was intrigued about his lack of speech development, typical hearing and quite large sign vocabulary.  After talking with mom, I asked if she would bring him back so I could test him.  He had been tested by his school district but there was not a definitive diagnosis.  When I tested him, I suspected CAS and talked with mom about it.  He began therapy and I started learning everything I could about CAS so I could provide appropriate treatment.  He has made slow but steady progress and at 9 years old, he is still in speech therapy, but is working on residual errors.  Working with him and his family for the last 6 years has grown a passion and love for children with CAS who struggle and work so hard to communicate.  I have since worked with numerous children through the clinic and through the last 5 years of a summer camp for children with CAS and learned so much from each child.  I have approximately 150 hours of continuing education on CAS including completion of the Advanced Intensive Training (Boot Camp) by Apraxia Kids.  I have a love and passion for helping these children and their families.

Why was becoming an outreach coordinator important to you?

In my clinic I have seen several children who were 7-9 years old and had severely unintelligible speech.  When I evaluated them, I determined they had CAS and had not had appropriate treatment and so did not have functional communication.  We now have appropriate assessment and treatment methodologies for young children with CAS however, the lack of awareness and therapists who are knowledgeable to provide these services has led to these heartbreaking cases.

I wanted to help make a change and I see this outreach position as a way to educate, advocate and assist families to be able to obtain appropriate services in a timely manner.  There is a need to provide education to the medical community and SLPs about CAS and its diagnosis and treatment.  It is so important for children with CAS to receive services at an early age so that children can have their voice as early as possible.

My hope is that we have more trained therapists in my community for children to receive appropriate services and that families are involved with each other in support and awareness.

How can people in your community get involved?

By asking questions, going to the Apraxia Kids website and Facebook pages, joining the walk, participating in support groups and attending trainings.

 

Scott Moran – Arkansas

What is your connection to childhood apraxia of speech?

My son Owen has childhood apraxia of speech. We have been on this journey since January 2016, but we began our journey to help Owen find his voice a year earlier. When we began this journey Owen could say two words (mine, mama).

The progress he has made since January 2016 has been extraordinary. He has a full vocabulary and that is due to his amazing speech therapist, Wendy Lyon. At one point Owen received three hours of speech, two hours of OT, and one hour of PT weekly. He now receives one hour of speech and one hour of OT weekly.

Why was becoming an outreach coordinator important to you?

There are several reasons why this role is important to me. The most important reason by far though is the chance to connect with families new to the diagnosis and be there to support them in a way that so many others supported me. Apraxia is a lonely diagnosis. In the early stages of the journey, worry has the ability to consume you and your friends and family often try to be sympathetic and tell you that one day your child will snap out of this. They don’t realize the work that it takes to “snap out” of apraxia. Apraxia is never easy, but when you find your apraxia family then you know you no longer have to be alone on your journey.

As the only guy in this fine group of outreach coordinators, I also think I give a different perspective than everyone else.  It is a similar but still different view from a dad’s point of view and one of my biggest goals is to connect dads with one another and with Apraxia Kids.

I hope to someday get to the point where when I approach someone about apraxia that they already have heard of the word and the disorder.

I hope to connect every family that is impacted by apraxia in Arkansas to one another and also to Apraxia Kids.

I hope to reach out to pediatricians and help them become more knowledgeable about apraxia. I also hope to connect with SLP’s around the state with Apraxia Kids through the SLP directory and in doing so connect more families to speech therapists knowledgeable about apraxia.

How can people in your community get involved?

They can email me at scottm@apraxia-kids.org and they can find me on Facebook and find plenty of videos with my son Owen in them. They can also sign up and join us for the Arkansas Walk for Apraxia.

 

 

Meghan O’Malley – New York

What is your connection to childhood apraxia of speech?

My son has childhood apraxia of speech.  When searching for answers regarding his “speech delay”, I was able to find my speech records from the 1980s.  It turns out they were almost identical to my son.  We realized after all these years that I had undiagnosed childhood apraxia of speech.  At one point, I was misdiagnosed with cerebral palsy and my parents were told I would never speak.  Although, I did receive speech therapy for many years as a child, after all these years, we did not know it was childhood apraxia of speech.  This is one of the many reasons it is so critical to spread apraxia awareness.

Why was becoming an outreach coordinator important to you?

I am passionate about spreading awareness about apraxia. I am a parent of a child with apraxia, so I understand other parents concerns.  It is difficult for any parent to deal with having a child receive a diagnosis, but when there is limited information available, it makes it that much more difficult.  Being a outreach coordinator was important to me because it will bring families in my community that much closer to having information readily available to them and professionals in the community knowledgeable about how to diagnose and treat apraxia.

I believe our children are our future. It is up to us, as a community as a whole, to shape them into positive self-confident individuals by giving them resources and tools they need to succeed.  I hope to build a strong network and community, which will ultimately lead to increased awareness about apraxia and a greater amount of resources, trained professionals and information needed to ensure every child with childhood apraxia of speech in my community has the chance to succeed.

How can people in your community get involved?

There are an unlimited amount of ways for people in the community to get involved.  The easiest, yet extremely impactful way for others in our community to make a difference is to help spread apraxia awareness.  By spreading awareness families, professionals, and communities will learn about apraxia and the resources available to them through Apraxia Kids. Spreading awareness changes other peoples’ beliefs and mindsets, so that everyone, with a connection to apraxia or not, feels love for our children and feels that they have a responsibility to take an action to support them whichever way they can, even if it’s as simple as explaining what apraxia is to their neighbor.  Every action, no matter how big or how small, is powerful, important, and worthwhile.

 

Kelly Pichitino – Arizona

What is your connection to childhood apraxia of speech?

I am a mother of a son who has severe apraxia of speech.

Why was becoming an outreach coordinator important to you?

It is important to me because, until I connected with Apraxia Kids, over 3 years ago, I felt alone, I knew not one other parent. I felt very lost, what direction to turn, what is best for my son, what the heck is apraxia? Then I saw many needs that my community is in need of. When the opportunity came to apply, I felt that there was even more HOPE for families with children with apraxia. Until I connected with Apraxia Kids nearly 4 years ago, I felt all those things daily. I do not ever want another family to have those feelings like I had. I want to build a community where every speech professional and family has the resources they need to help their child find their voice.

In my community, I hope to accomplish a continuing support system for families. A continuing support system for professionals. My big picture would be, that every single SLP in the state knows that Apraxia Kids is here to strengthen the lives of families and professionals that have a connection to a child with CAS. On top of that, with having awareness for apraxia is second nature to the general community.

How can people in your community get involved?

People in my community can get involved by attending or volunteering for the local walk, helping by wearing blue and participating in Apraxia Awareness Month, participating in a Be the Voice campaign, holding a fundraiser, and honestly the biggest, would be, the community can take a few minutes to read the Apraxia Kids website to help gain knowledge and learn ways to be of support to families and professionals in our community.

 

Shelly Ready – Minnesota

What is your connection to childhood apraxia of speech?

My son, Ethen has Apraxia.

Why was becoming an outreach coordinator important to you?

I wanted to become an outreach coordinator to help families find the joy in apraxia and to never feel alone in their journey, by connecting them to resources through Apraxia Kids and engaging both parents and professionals to strength their support network!

More than anything I want to raise awareness, gain acceptance and help the kiddos impacted by apraxia to reach their highest potential.

How can people in your community get involved?

Share. Spread apraxia awareness and join your local community Walk for Apraxia.

 

Jandy Smith – California

What is your connection to childhood apraxia of speech?

My 5 year old son has CAS.  Our journey to diagnosis was confusing and long and I hope that others can get the support that they need earlier than we were able to.

Why was becoming an outreach coordinator important to you?

It was an opportunity to connect the community.  I see this as a way to come together, learn from each other, and support others in different stages in their journey.  San Diego is bigger than people realize and it’s easy for us to become isolated.

For there to be consistent connections made between parents, SLPs, and other stakeholders.  I want parents and SLPs to be better informed on CAS and how to get the support that they need.  I’d like a transparent system that levels out the privilege and access that some don’t get to experience when seeking support.

How can people in your community get involved?

Reach out!  San Diego is so spread out.  Reaching out is the first way to meet others and get information.  There are so many knowledgeable parents and SLPs and we have visions for the future to create a network of support.

 

Brenae Solis – Florida

What is your connection to childhood apraxia of speech?

My daughter Emily has apraxia.

Why was becoming an outreach coordinator important to you?

After many years as the coordinator of the Tampa Bay Walk for Apraxia, I felt that it was time that I expand my mission to support our families, promote apraxia awareness, and Apraxia Kids on a much larger scale.

I hope to help all families that are effected by CAS, whether new to the diagnosis or not, find the support and resources they need in order to give their child the best possible chance for intelligible speech.

How can people in your community get involved?

Our community can get involved simply by spreading apraxia awareness and directing families to either me or the Apraxia Kids website. On the Apraxia Kids website there is wonderful printed material available to download or order that can be handed out to family, friends, and professionals; teachers, physicians, and SLPs to help them better understand childhood apraxia of speech. Another way our community can get involved is by supporting and/or participating in our events such as our annual Walk for Apraxia and apraxia awareness month, which is coming in May.

 

Nicole Swaim – Texas

What is your connection to childhood apraxia of speech?

My 7 year old son, Hudson, was diagnosed with CAS 3 years ago.

Why was becoming an outreach coordinator important to you?

Becoming an outreach coordinator was important to me because as a parent to a child with CAS, it’s been a struggle to find the resources and support that my son needs.  My son began speech therapy at 18 months old, but was not diagnosed with childhood apraxia of speech until he was 4 years old! For 2 1/2 years he was receiving inadequate treatment and made little to no progress.  At age 4 he was 0% intelligible; now (3 years later) with the right treatment, he has made outstanding progress and is 78% intelligible!  Recognizing the challenges faced by our family and many others with apraxia was my driving force behind becoming an outreach coordinator.

By providing outreach for Apraxia Kids, my ultimate goal is to ensure that more children receive accurate diagnosis and treatment of CAS.  This goal includes more awareness, more trained SLP’s, and affordability of therapy (thru insurance coverage, grants, etc).

How can people in your community get involved?

Utilize the resources available on www.Apraxia-Kids.org to educate yourselves and those around you about CAS.  There are so many free printables, webinars, and articles available for us. Encourage your SLP’s to use the webinars to earn their CEUs at a one-time, low cost.  Join our Walk for Apraxia in the fall!  Reach out to me with any questions, suggestions, etc. and let’s team up!

 

Laura Wood – Missouri

What is your connection to childhood apraxia of speech?

I am a speech-language pathologist working in the public schools in Missouri.

Why was becoming an outreach coordinator important to you?

Becoming an outreach coordinator was important to me because in my rural community, resources for families and children impacted with childhood apraxia of speech are limited.  Children with CAS requires such individualized and focused therapy and are often so impacted that their families are in need of someone to turn to for answers.  I hope to be the person in my community that can help steer parents of children with CAS to the resources they need to support their child and to be a resource for SLPs in my community and in my state.

I hope to bring awareness about apraxia of speech to my community.  I want to make sure families don’t feel alone in this diagnosis.  Also, I hope to help educate school based SLPs and provide them the resources they need to accurately diagnose and treat CAS.

How can people in your community get involved?

People in my community can get involved by accessing the Apraxia Kids website.  They can also participate in the Kansas City Walk for Apraxia.

As Apraxia Kids grew, we knew we needed to develop an understanding of the needs of local communities to improve our resources and have a local presence. In December, 15 Outreach Coordinators attended a training in Pittsburgh and have since been working to raise awareness and offer support in their communities. We are pleased to introduce this elite group of volunteers who will help shape the future of our organization!

 

Pooja Aggarwal – Virginia

What is your connection to childhood apraxia of speech?

I am a Speech-Language Pathologist who specializes in working with children with Childhood Apraxia of Speech. I am a graduate of the Apraxia Kids Intensive Training Institute and am recognized by Apraxia Kids for Advanced Training and Clinical Expertise in Childhood Apraxia of Speech.

Why was becoming an outreach coordinator important to you?

Becoming an outreach coordinator is important to me in order to be able to help share evidence based information.  In other words, I believe every child should have access to the highest quality of therapy and I know that begins with therapy that is rooted in what has been proven to work!

My hope is that in committing to volunteering my time I will be able to help share information with my Speech Language Pathologist colleagues that will improve outcomes for children with CAS. Similarly, I hope to share knowledge with families so each parent can make informed choices to help every child find their voice!

How can people in your community get involved?

Community members can get involved in upcoming parent and professional support groups, volunteering and participating in the Walk for Apraxia, and sharing their voices on the Apraxia Kids Virginia Facebook group.

 

Kim Cotton – Colorado

What is your connection to childhood apraxia of speech?

My beautiful 2 year old little boy with big blue eyes wasn’t speaking at all. After months of being told not to worry, that he was “just a boy” and he would talk when he was ready, or completely offensive things like maybe if I talked to him more then he would talk, I finally took him to get a speech evaluation at Children’s Hospital when he was 2.  He was diagnosed with severe childhood apraxia of speech. It brought every stage of emotion that a parent can go through when you realize your child can’t tell you anything they are feeling or thinking and that there is a very long and difficult road of therapies just to try to do something that most children do so easily…speak! I started out so clueless and terrified and I felt totally alone. Over time, I have found my tribe, and equipped myself with a wealth of knowledge, and my son is finding his voice.

Why was becoming an outreach coordinator important to you?

Becoming an outreach coordinator was really important to me because I wanted to see awareness and acceptance in this world for my son, and I didn’t want any other family to feel the way that I felt when we first received his diagnosis. Families will still have to struggle through all of the phases of grief but at least they won’t have to feel so alone while they go through it. I can help families find their tribe and equip them with the necessary information and resources they need.  I want to teach the world about what my son has so that it lessens the stigma of the unknown!  It’s crucial to me to help properly educate the professionals that help all of our children with apraxia to speak.

I hope to help create a community that knows what apraxia is when you tell them. I want it to be an understood speech disorder especially within the professional speech language community and within the schools. I want children to get the needed help within their IEP’s at school that should just be a given with a child with apraxia. I want insurance companies and doctors to understand what this disorder is and what these amazing children need so that children actually get diagnosed early and then get the services they need to receive covered under insurance.

How can people in your community get involved?

Professionals in the Speech Language field and medical field and schools can get involved with the trainings about apraxia. Educate the masses! Watch the On-Demand Webinars on Apraxia-Kids.org! Families can contact an outreach coordinator nearby and get linked up with a wealth of resources and support! Please join a walk team for your local Walk for Apraxia if you know someone in your community with apraxia to show them your love and support. Talk to your kids about this disorder so they can demonstrate love and inclusion for these amazing kiddos!

 

Maureen Elia – Illinois

What is your connection to childhood apraxia of speech?

My son Greyson, who’s 4, has CAS.

Why was becoming an outreach coordinator important to you?

Becoming an outreach coordinator was so important to me because Apraxia Kids served such a pivotal role in our journey. I wanted to help other families in my community by helping them find and utilize the resources that Apraxia Kids has laid out for us. If I can help just one family either find their perfect SLP or give them hope and show them they aren’t alone, then I will have been successful.

I really want to increase the personal interactions among the apraxia community in my area. The link between professionals and families as well as the relationships between families is SO important on this journey. I’m hoping to help facilitate those partnerships, thus strengthening our community.

How can people in your community get involved?

Join our FB page, Apraxia Kids Illinois, to stay up to date on all the latest resources and happenings in Illinois. Share your story, reach out to other families, and increase the partnerships within our communities.

Then help us spread awareness. Both through awareness activities in May, advocacy, and through the walk, join us in educating the world about what apraxia is and how hard our children work to communicate. The more acceptance we have, the more resources (supportive and financial) will be available to our children.

 

Shelley Kelley – Oklahoma

What is your connection to childhood apraxia of speech?

I am the mother of a 10 year old little boy with apraxia.

Why was becoming an outreach coordinator important to you?

I will never forget the feeling of isolation when my son was diagnosed.  My husband and I, nor anyone we knew had ever heard of childhood apraxia of speech.  We felt as though we were all alone.  I don’t want any other family in our community to have that feeling of loneliness.

I hope to provide support and raise awareness.  In doing so, I hope to never again hear the words, “Apraxia?  What’s that?”

How can people in your community get involved?

Learn about apraxia, and spread the word.  If someone you know has a child that is struggling with speech, encourage them to get an evaluation as early as possible.  Early intervention is key.  Support and participate in community events such as national awareness day and the Walk for Apraxia.

 

Trish Mayro – Pennsylvania

What is your connection to childhood apraxia of speech?

I am a speech-language pathologist and Apraxia Kids “Bootcamper” (2018).

Why was becoming an outreach coordinator important to you?

I was a professional who “didn’t know what I didn’t know” about CAS. Encountering children who needed me to be better at what I do helped me to focus on getting better at providing therapy for kids with CAS. Now, I want to inspire fellow SLPs to expand their knowledge and skills, and also help families of apraxia stars connect with good resources to help their kids. Every child really does deserve a voice!

I want my community to be able to tap into a “network of care” where knowledgeable and helpful professionals and experienced families can guide and provide support to families and professionals new to the apraxia journey. I see my role as building the connections to spread this “network of care” by connecting people to each other and to the resources provided by Apraxia Kids.

How can people in your community get involved?

People can start wherever they see a need or have a need. That might mean joining the apraxia support group in their area, volunteering to help out with the local Walk for Apraxia, accessing great information from the article library and webinar platform at the Apraxia Kids website, or by just spreading awareness about CAS in their own personal interactions with other families and professionals.

 

Patricia Miller – Connecticut

What is your connection to childhood apraxia of speech?

My son was diagnosed with CAS when he was four years old.

Why was becoming an outreach coordinator important to you?

Apraxia Kids saved my life. When my husband and I were battling the school district looking for answers that they would not help us find, we met with a developmental pediatrician that heard our son speak for ten seconds before she said he has apraxia! Finally an answer to our questions, but then I had more questions that needed answers. As I searched for information about apraxia, I found the Apraxia Kids website. I literally did not sleep that night because I was up reading, watching webinars, connecting with the Facebook page, and realized I finally know why my son cannot talk. Fast forward ten months of grueling PPT meetings, evaluations, and private speech therapy, I was preparing to attend my first conference July 2018. The only person I knew was our private speech therapist, but as I walked into the meet and greet, I felt as if I was at a family reunion; I was home. The relationships I have made and continue to make has saved my life. Apraxia Kids has saved my son from being incorrectly labeled and possibly would still be nonverbal. Apraxia Kids has saved my sanity and strengthened my relationship with my husband and friends. Apraxia Kids gave me hope when I lost it. I never want another family to endure the pain and suffering we went through. I will make it my life’s mission to bring awareness of CAS, help make change in special education, and ensure all of our stars and their families have the support I found when I most desperately needed it.

I hope to bring awareness of CAS to the east coast and see change in special education services especially for children with CAS.

How can people in your community get involved?

All they need to do is ask and I will do everything in my power to help them find the resources they need. Joining the Facebook pages, attending the conference, attending a walk, try out the webinar platform, or simply pass out information to their school or pediatrician. Every little bit helps.

 

Laura Moorer – Texas

What is your connection to childhood apraxia of speech?

I am a Speech Pathologist and about 10 years ago, I attended a conference on the brain and heard about CAS for the first time.  I did a little research and workshops and was very interested in it.  Then a couple of years later, a three year old child came into the Speech, Language and Hearing clinic at TWU where I was the director to have his hearing tested because he was not talking.  The audiologist wanted me to meet the child and mom because she was intrigued about his lack of speech development, typical hearing and quite large sign vocabulary.  After talking with mom, I asked if she would bring him back so I could test him.  He had been tested by his school district but there was not a definitive diagnosis.  When I tested him, I suspected CAS and talked with mom about it.  He began therapy and I started learning everything I could about CAS so I could provide appropriate treatment.  He has made slow but steady progress and at 9 years old, he is still in speech therapy, but is working on residual errors.  Working with him and his family for the last 6 years has grown a passion and love for children with CAS who struggle and work so hard to communicate.  I have since worked with numerous children through the clinic and through the last 5 years of a summer camp for children with CAS and learned so much from each child.  I have approximately 150 hours of continuing education on CAS including completion of the Advanced Intensive Training (Boot Camp) by Apraxia Kids.  I have a love and passion for helping these children and their families.

Why was becoming an outreach coordinator important to you?

In my clinic I have seen several children who were 7-9 years old and had severely unintelligible speech.  When I evaluated them, I determined they had CAS and had not had appropriate treatment and so did not have functional communication.  We now have appropriate assessment and treatment methodologies for young children with CAS however, the lack of awareness and therapists who are knowledgeable to provide these services has led to these heartbreaking cases.

I wanted to help make a change and I see this outreach position as a way to educate, advocate and assist families to be able to obtain appropriate services in a timely manner.  There is a need to provide education to the medical community and SLPs about CAS and its diagnosis and treatment.  It is so important for children with CAS to receive services at an early age so that children can have their voice as early as possible.

My hope is that we have more trained therapists in my community for children to receive appropriate services and that families are involved with each other in support and awareness.

How can people in your community get involved?

By asking questions, going to the Apraxia Kids website and Facebook pages, joining the walk, participating in support groups and attending trainings.

 

Scott Moran – Arkansas

What is your connection to childhood apraxia of speech?

My son Owen has childhood apraxia of speech. We have been on this journey since January 2016, but we began our journey to help Owen find his voice a year earlier. When we began this journey Owen could say two words (mine, mama).

The progress he has made since January 2016 has been extraordinary. He has a full vocabulary and that is due to his amazing speech therapist, Wendy Lyon. At one point Owen received three hours of speech, two hours of OT, and one hour of PT weekly. He now receives one hour of speech and one hour of OT weekly.

Why was becoming an outreach coordinator important to you?

There are several reasons why this role is important to me. The most important reason by far though is the chance to connect with families new to the diagnosis and be there to support them in a way that so many others supported me. Apraxia is a lonely diagnosis. In the early stages of the journey, worry has the ability to consume you and your friends and family often try to be sympathetic and tell you that one day your child will snap out of this. They don’t realize the work that it takes to “snap out” of apraxia. Apraxia is never easy, but when you find your apraxia family then you know you no longer have to be alone on your journey.

As the only guy in this fine group of outreach coordinators, I also think I give a different perspective than everyone else.  It is a similar but still different view from a dad’s point of view and one of my biggest goals is to connect dads with one another and with Apraxia Kids.

I hope to someday get to the point where when I approach someone about apraxia that they already have heard of the word and the disorder.

I hope to connect every family that is impacted by apraxia in Arkansas to one another and also to Apraxia Kids.

I hope to reach out to pediatricians and help them become more knowledgeable about apraxia. I also hope to connect with SLP’s around the state with Apraxia Kids through the SLP directory and in doing so connect more families to speech therapists knowledgeable about apraxia.

How can people in your community get involved?

They can email me at scottm@apraxia-kids.org and they can find me on Facebook and find plenty of videos with my son Owen in them. They can also sign up and join us for the Arkansas Walk for Apraxia.

 

 

Meghan O’Malley – New York

What is your connection to childhood apraxia of speech?

My son has childhood apraxia of speech.  When searching for answers regarding his “speech delay”, I was able to find my speech records from the 1980s.  It turns out they were almost identical to my son.  We realized after all these years that I had undiagnosed childhood apraxia of speech.  At one point, I was misdiagnosed with cerebral palsy and my parents were told I would never speak.  Although, I did receive speech therapy for many years as a child, after all these years, we did not know it was childhood apraxia of speech.  This is one of the many reasons it is so critical to spread apraxia awareness.

Why was becoming an outreach coordinator important to you?

I am passionate about spreading awareness about apraxia. I am a parent of a child with apraxia, so I understand other parents concerns.  It is difficult for any parent to deal with having a child receive a diagnosis, but when there is limited information available, it makes it that much more difficult.  Being a outreach coordinator was important to me because it will bring families in my community that much closer to having information readily available to them and professionals in the community knowledgeable about how to diagnose and treat apraxia.

I believe our children are our future. It is up to us, as a community as a whole, to shape them into positive self-confident individuals by giving them resources and tools they need to succeed.  I hope to build a strong network and community, which will ultimately lead to increased awareness about apraxia and a greater amount of resources, trained professionals and information needed to ensure every child with childhood apraxia of speech in my community has the chance to succeed.

How can people in your community get involved?

There are an unlimited amount of ways for people in the community to get involved.  The easiest, yet extremely impactful way for others in our community to make a difference is to help spread apraxia awareness.  By spreading awareness families, professionals, and communities will learn about apraxia and the resources available to them through Apraxia Kids. Spreading awareness changes other peoples’ beliefs and mindsets, so that everyone, with a connection to apraxia or not, feels love for our children and feels that they have a responsibility to take an action to support them whichever way they can, even if it’s as simple as explaining what apraxia is to their neighbor.  Every action, no matter how big or how small, is powerful, important, and worthwhile.

 

Kelly Pichitino – Arizona

What is your connection to childhood apraxia of speech?

I am a mother of a son who has severe apraxia of speech.

Why was becoming an outreach coordinator important to you?

It is important to me because, until I connected with Apraxia Kids, over 3 years ago, I felt alone, I knew not one other parent. I felt very lost, what direction to turn, what is best for my son, what the heck is apraxia? Then I saw many needs that my community is in need of. When the opportunity came to apply, I felt that there was even more HOPE for families with children with apraxia. Until I connected with Apraxia Kids nearly 4 years ago, I felt all those things daily. I do not ever want another family to have those feelings like I had. I want to build a community where every speech professional and family has the resources they need to help their child find their voice.

In my community, I hope to accomplish a continuing support system for families. A continuing support system for professionals. My big picture would be, that every single SLP in the state knows that Apraxia Kids is here to strengthen the lives of families and professionals that have a connection to a child with CAS. On top of that, with having awareness for apraxia is second nature to the general community.

How can people in your community get involved?

People in my community can get involved by attending or volunteering for the local walk, helping by wearing blue and participating in Apraxia Awareness Month, participating in a Be the Voice campaign, holding a fundraiser, and honestly the biggest, would be, the community can take a few minutes to read the Apraxia Kids website to help gain knowledge and learn ways to be of support to families and professionals in our community.

 

Shelly Ready – Minnesota

What is your connection to childhood apraxia of speech?

My son, Ethen has Apraxia.

Why was becoming an outreach coordinator important to you?

I wanted to become an outreach coordinator to help families find the joy in apraxia and to never feel alone in their journey, by connecting them to resources through Apraxia Kids and engaging both parents and professionals to strength their support network!

More than anything I want to raise awareness, gain acceptance and help the kiddos impacted by apraxia to reach their highest potential.

How can people in your community get involved?

Share. Spread apraxia awareness and join your local community Walk for Apraxia.

 

Jandy Smith – California

What is your connection to childhood apraxia of speech?

My 5 year old son has CAS.  Our journey to diagnosis was confusing and long and I hope that others can get the support that they need earlier than we were able to.

Why was becoming an outreach coordinator important to you?

It was an opportunity to connect the community.  I see this as a way to come together, learn from each other, and support others in different stages in their journey.  San Diego is bigger than people realize and it’s easy for us to become isolated.

For there to be consistent connections made between parents, SLPs, and other stakeholders.  I want parents and SLPs to be better informed on CAS and how to get the support that they need.  I’d like a transparent system that levels out the privilege and access that some don’t get to experience when seeking support.

How can people in your community get involved?

Reach out!  San Diego is so spread out.  Reaching out is the first way to meet others and get information.  There are so many knowledgeable parents and SLPs and we have visions for the future to create a network of support.

 

Brenae Solis – Florida

What is your connection to childhood apraxia of speech?

My daughter Emily has apraxia.

Why was becoming an outreach coordinator important to you?

After many years as the coordinator of the Tampa Bay Walk for Apraxia, I felt that it was time that I expand my mission to support our families, promote apraxia awareness, and Apraxia Kids on a much larger scale.

I hope to help all families that are effected by CAS, whether new to the diagnosis or not, find the support and resources they need in order to give their child the best possible chance for intelligible speech.

How can people in your community get involved?

Our community can get involved simply by spreading apraxia awareness and directing families to either me or the Apraxia Kids website. On the Apraxia Kids website there is wonderful printed material available to download or order that can be handed out to family, friends, and professionals; teachers, physicians, and SLPs to help them better understand childhood apraxia of speech. Another way our community can get involved is by supporting and/or participating in our events such as our annual Walk for Apraxia and apraxia awareness month, which is coming in May.

 

Nicole Swaim – Texas

What is your connection to childhood apraxia of speech?

My 7 year old son, Hudson, was diagnosed with CAS 3 years ago.

Why was becoming an outreach coordinator important to you?

Becoming an outreach coordinator was important to me because as a parent to a child with CAS, it’s been a struggle to find the resources and support that my son needs.  My son began speech therapy at 18 months old, but was not diagnosed with childhood apraxia of speech until he was 4 years old! For 2 1/2 years he was receiving inadequate treatment and made little to no progress.  At age 4 he was 0% intelligible; now (3 years later) with the right treatment, he has made outstanding progress and is 78% intelligible!  Recognizing the challenges faced by our family and many others with apraxia was my driving force behind becoming an outreach coordinator.

By providing outreach for Apraxia Kids, my ultimate goal is to ensure that more children receive accurate diagnosis and treatment of CAS.  This goal includes more awareness, more trained SLP’s, and affordability of therapy (thru insurance coverage, grants, etc).

How can people in your community get involved?

Utilize the resources available on www.Apraxia-Kids.org to educate yourselves and those around you about CAS.  There are so many free printables, webinars, and articles available for us. Encourage your SLP’s to use the webinars to earn their CEUs at a one-time, low cost.  Join our Walk for Apraxia in the fall!  Reach out to me with any questions, suggestions, etc. and let’s team up!

 

Laura Wood – Missouri

What is your connection to childhood apraxia of speech?

I am a speech-language pathologist working in the public schools in Missouri.

Why was becoming an outreach coordinator important to you?

Becoming an outreach coordinator was important to me because in my rural community, resources for families and children impacted with childhood apraxia of speech are limited.  Children with CAS requires such individualized and focused therapy and are often so impacted that their families are in need of someone to turn to for answers.  I hope to be the person in my community that can help steer parents of children with CAS to the resources they need to support their child and to be a resource for SLPs in my community and in my state.

I hope to bring awareness about apraxia of speech to my community.  I want to make sure families don’t feel alone in this diagnosis.  Also, I hope to help educate school based SLPs and provide them the resources they need to accurately diagnose and treat CAS.

How can people in your community get involved?

People in my community can get involved by accessing the Apraxia Kids website.  They can also participate in the Kansas City Walk for Apraxia.



Credentials:
Hours of Operation:
Treatment locations:
Address:

,
Phone:
Email:

Overall Treatment Approach:
   

Percent of CAS cases:

Parent Involvement:
   

Community Involvement:
   

Professional consultation/collaboration:

Min Age Treated:

Max Age Treated:

Insurance Accepted: