Previous Ambassadors

Ambassador Family: 

The Clonch's

Meet the Clonch’s.

My name is Jared Clonch from St. Albans, WV, and I am the father of two boys; Jared Jr. (LJ) and Jacob.

Jacob was born February 3rd, 2016. He was brought into this world a healthy and happy baby; there were no indications of what the future would hold for us. On February 28th, 2016, 25 days after he came into this world, we lost my wife, Lacey, from pregnancy related complications. Hopefully, he is none the wiser and all things point to the fact that he has no idea what he has lost.

 

January 2018: Jacob is about 18 months old at the time and we decide that it would be a good thing to get him involved in Birth to Three. We started to notice that he would not make eye contact and was starting to lose the few words that he had. We didn’t think too much of it, because we thought Jacob was already getting the services he needed. We suspected that he would be like his brother and just have a “light switch” go off, illuminating the communication skills.

 

August 2019: Jacob is 3 years and 3 months old, has aged out of Birth to Three services and is still not progressing with communication skills. His way of communicating what he wants is tantrums and screaming. We also noticed he had developed some stemming tendencies, often associated with children on the spectrum. Keep in mind, we are doing regular well-child visits with the pediatrician and they do not raise any red flags.

 

September 2019: I attended the first annual Au-some Golf Tournament with my company, where I had the opportunity to speak with Sarah Harris and Jill McLaury about what we were seeing in Jacob. Jill recommended we set up a meeting with her and her team at Bright Futures to bring both boys in for observation. We did that informal meeting in October and it was suggested we get Jacob evaluated for autism.

 

Almost immediately after that meeting, we started checking around to see what therapies are available and what therapists were local to actually do an evaluation. I am pretty sure we were on four wait lists with doctors from around the Charleston-Huntington area. We were being told that it would be at least 8 months before we could be seen by anyone. We spent the next three months making weekly calls to all of the offices we were on waitlists for, hoping for an opening to see a child psychologist who could evaluate Jacob and give us definitive answers.


December 2019: We found Milestones Physical Therapy in Teays Valley. We met with them and started weekly occupational therapy (OT) and speech therapy.

January, 2020: We finally catch a break! The psychologist at Milestones has a cancellation.

 

February 2020: We got the results of Jacob’s evaluation and it confirmed what we had come to suspect. Jacob was diagnosed with Level 3 Autism Spectrum Disorder, which requires significant support; we knew that we must get him into Applied Behavior Analysis (ABA) therapy as soon as possible. Jacob had just turned four and we had learned that most local ABA therapy centers have a hard time making room for kids that are older than 4 years old. So, we head back over to Bright Futures and they tell us that it is unlikely we will be accepted into the program, due to age and just a lack of qualified therapists to implement the plan. We put Jacob on the waitlist anyway, hoping we catch another break and get into the program somehow.


During all of this back and forth, and wondering what we were going to do to get the help Jacob needed, we contemplated moving to Columbus, OH, Charlotte, NC, Greenville, SC, Raleigh, NC and Greensboro, NC.

 

February/March 2020: With our new mission laid out in front of us, and knowing that we have to do something, we were relentless in contacting Bright Futures to see if a spot had opened up for Jacob. I am sure the folks down there got tired of hearing from us. As luck would have it, we received a call from Bright Futures to discuss a possible path forward for Jacob to receive services. Of course we jumped at the chance, because who knew if or when we would have the chance to get Jacob the help he needed so close to home. On March 9th, Jacob had his first session at Bright Futures in the new training program. He was going to be receiving services Monday thru Thursday for 2 hours in the afternoon. It’s important to disclose that while some services are better than none, studies show that early, intensive ABA is most effective. It’s not unusual for children to receive as many as 30 hours a week; Jacob would be receiving 8 to start.

 

Jacob’s Progress: Jacob has always been a pretty good kid, you know, your typical toddler. He doesn’t always listen and makes a mess of things when given the opportunity. Even at 4 years old, he didn’t seem to have any interest in playing with other kids or joining in with LJ and myself around the house. Always kind of kept to himself unless he wanted something. When he wanted something it could turn into WWIII at our house. Since he was still not talking, it was difficult to know what he wanted or needed. Tantrums, crying, screaming were a normal part of everyday life for us. Eventually you start to think this is the new normal and as a parent it is demoralizing.

 

August 2020: Jacob has now been in ABA for about 3 months and, oh my, have we noticed a change. He is still not talking, but everything else has gotten worlds better. Now Jacob is a very good listener, for a 4 year old. He even helps out around the house from time to time with chores and cleaning up. He is showing much more interest in playing with me and LJ and will now imitate our play. Just in the past couple of weeks, the folks at Bright Futures introduced a device to help Jacob communicate during his sessions. They were all impressed with how quickly he has caught on and continues progressing rapidly. He still does not talk to us, but we are hopeful it is coming soon. We will catch some random words now and then which gives us hope. Everyday when I get home from work I see my little boy growing up and progressing more than I had imagined possible just 6 months ago. Jacob is doing so well that the new struggle is finding more challenging tasks and trying to increase his time spent at Bright Futures. Jill and the group are working diligently to find a way to increase his services at Bright Futures, but there still is a lack of qualified technicians and therapists to do this.

 

We need everyone in the community to come together and help provide funding to grow access to the necessary intervention services for kids on the autism spectrum. We consider ourselves very lucky, in the right places at the right time, to have been given the opportunity to listen to the Snyder’s share their autism journey last September, to have talked with the CARES team about my son’s struggles, to have been encouraged by them to seek an evaluation for a diagnosis, and ultimately to enroll Jacob at Bright Futures. The fight for services is daunting, and there is still a great deal of work to be done; but with the help of our gracious supporters, we are up to the task!

Ambassador Family: 

The Frye's

Alec Jo Frye was born healthy and happy on September 6, 2010. Her first few months of life were uneventful until New Year’s Day 2011, when she had her first seizure. Alec was diagnosed with epilepsy at 9 months old, and her next few years were filled with appointments, testing, surgeries and medications. Despite all she had been through she seemed to be reaching her developmental milestones, although they were delayed. We blamed those delays on her uncontrolled seizures and numerous other medical problems. Alec had her first M-CHAT screening when she was 20 months old. I can still remember the look of concern on the doctor’s face. Alec received a Birth to Three referral at that appointment. She started receiving weekly speech, occupational, and developmental therapy at 24 months, and it was during those weekly sessions that the question of autism arose. More referrals came and Alec was diagnosed with an intellectual disability and pervasive developmental disorder. We wanted a second opinion, and Alec was referred to Nationwide Child Developmental Center in Columbus. On May 29, 2013, at 2 years and 8 months old, Alec was diagnosed with autism. We left that appointment filled with emotions and a prescription for the “gold standard” of autism treatment: applied behavior analysis (ABA). As we continued the search for this elusive thing called ABA therapy, Alec continued Birth to Three services. Since she was nearing the age of 3, her services began to fade out and an exit meeting determined the next step was to transition her to a special needs pre-k. This was the only option for her to continue to get therapy. It wasn’t until February 2014, nearly a year later, that we finally heard about a place she might be able to get ABA therapy. We knew immediately that this is where Alec needed to be. After applications, phone calls and waiting, Alec had her first ABA session on November 18, 2015, 2.5 years after her autism diagnosis. When Alec started ABA at 5 years and 2 months old, she had little to no language and wasn’t able to communicate her wants and needs effectively. She relied on us for everything. Now, after 4 years of therapy, she is talking in complete sentences and is able to engage in reciprocal conversation. When asked, she is able to tell us about her day at school and what she ate for lunch. Alec has gained so much independence. ABA has not only changed Alec’s life but also our family as a whole. We have been given the tools to help Alec grow and develop into her most independent, productive self, something all parents want and deserve.

Ambassador Family: 

The Snyders

We are Michael and Stacy Snyder of Fraziers Bottom, WV and we are the parents of two beautiful children, Lily and Owen. We are honored to be the Ambassador Family for CARES, and to share our daughter’s autism journey in hopes of spreading awareness about autism interventions and services in West Virginia.

On November 13, 2015 our first baby was born. Lily was a healthy, perfect baby. It was love at first sight. As Lily got older, we noticed that she was delayed in meeting all milestones . By the time she was 18 months old, she still had no words, no waiving or pointing. She couldn’t hold utensils. She just wasn’t doing things that other kids her age could do. Lily was easily overwhelmed when she entered new situations, and we couldn’t calm her down until we left. You see, though her smile is contagious, she can be a very timid little girl who’s terrified of new people.

No matter what we did, Lily chose to play by herself.  If we got down to play with her, she would walk away to play alone. She avoided playing with other kids as well. We were heartbroken to see that our Lily didn’t play like other kids her age.

By the time Lily was two, we knew that we needed some answers, so we traveled to Cincinnati for testing. We soon received the gut wrenching results: Lily had moderate Autism Spectrum Disorder (ASD). Our perfect little girl was hit with the “A” word, and our whole world changed. She needed so much help- more than we could give her. As if the diagnosis wasn’t scary enough, we were also burdened with the financial stress that autism brings.

Families facing autism spend 40-60k a year on all of the assistance…and even worse, most families do not even have access to the necessary therapies.

We are fortunate. Lily is one of less than 10% of WV children whos life is being changed by Applied Behavioral Analysis (ABA). We began services at Bright Futures Learning Services on May 1st, 2018. With ABA, Lily has hit so many milestones! She has learned to play around others, talk, follow directions, match objects, and so much more. ABA has changed Lily’s entire life (and ours). While we still have a long road ahead of us, we plan to keep working until all the pieces fit.