My Milestones

Monthly Milestones | April 2018

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My Milestones: Past Conference Speaker & Exhibitor, Amanda Buzo

Amanda Buzo was a young lawyer starting her career in special needs estate planning when she first heard about Milestones.

In her interactions with clients, she kept coming across the organization’s name.

“Amazing resources! Invaluable tools! You have to go to the conference!”  her clients would tell her. Wanting to find out more, Amanda attended her first Milestones conference and was blown away.

“It was such a phenomenal event,” she says. “The environment was so positive and everyone was supportive of each other. It was very inspiring.”

Tell us about your first experience with Milestones.

I was an exhibitor at my very first conference in 2015. As an exhibitor, you’re on your feet all day and it can be very tiring. But the Milestones staff was very attentive and supportive, making sure we were comfortable and had everything we needed to make our experience a success.

Lauren (Daughtrey) introduced me to a board member and helped me make connections with the professional community. Milestones went out of their way to connect me, and as a result, I developed a lot of relationships with fellow exhibitors, conference attendees and the community. I had such a good experience that I wanted to be more involved.

How has Milestones helped you professionally?

Working with Milestones has given the Community Fund Management Foundation credibility and a seat at the table.

You are executive director at Community Fund Management Foundation. Tell us more about your organization.

We are a non-profit that establishes trusts for individuals with disabilities with money provided by the individuals or their families. We help families provide for a person’s needs in a way that helps safeguard their loved one’s eligibility for government benefits like Medicaid. We have 2,200 trusts in 82 of 88 counties in Ohio, which amount to about $93 million in assets. We have one of the largest pooled trusts in the US.
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My Milestones – Molly Dann

Molly Dann says the world would benefit from a changed perspective and acceptance of autism.

“We should look at it as a positive, not a negative,” says the 24-year-old Beachwood native, who was diagnosed with Asperger syndrome at age 11. “There are so many positive things individuals with autism have contributed. Take all the technology we have, for example. We wouldn’t have innovation without people with autism.”

An autism activist who is passionate about helping others find their voice, Molly, who earned the nickname the Autism Whisperer, has recently started to meet with legislators in the state’s capital to speak about important issues and advocate for people with disabilities. She is grateful for the support of her family, friends and the Milestones community.

“Milestones helped me get through high school and eventually with transitioning to adulthood,” she says. In addition to her advocacy work, Molly works part-time at the Strongsville Library and is attending Tri-C. Her full-time job goal is to be a paraprofessional in a special needs classroom.

“I’m in such a good place,” she says. “I have career goals. I’m getting married. I have my own apartment. I’m paying my bills. This is what success looks like.”

How has Milestones helped you?

I was a senior at Beachwood High School when I first learned about Milestones. I always wanted to work with special needs kids and I volunteered with Milestones to create a program that pairs a person with autism or disabilities with a neuro-typical person. The program included activities like helping them with social events like prom.
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My Milestones – The Gedeon Family

I want to start out the story by focusing on present day. A flash forward of sorts.

We are the lucky parents of a wonderful 12-year-old girl. She enjoys her adapted dance class, ice skating, playing with her IPad, eating sushi and dressing up. We are in a good place in that we can communicate with each other, express our frustrations verbally and actually play together in ways I did not always think possible.

Knowing these things about my girl Cora is a big deal.

Looking back a few years, when Cora was 2 1/2, my husband and I faced our denial that something was not right. The typical baby and toddler books were not working. Our daughter was not “The Happiest Baby on the Block” and techniques from the Super Nanny reruns were failing miserably.

Eventually we found ourselves at a doctor’s office receiving an autism diagnosis. As freaked out as I was with the diagnosis, at least we now knew and could get a plan together to deal with it. I was eager to hear what the next steps were. I was looking for the doctor to give us a “treatment plan” like I had received from every other doctor visit up to this point. For example, “Take two aspirins and call me in the morning” or “Eat right and exercise.”

Unfortunately, that straightforward medical advice I was looking for did not happen. But we did get a web address to an organization called Milestones Autism Resources.

After coming to terms with the diagnosis and what it meant for us as a family, we found ourselves at the Milestones website. Keep in mind, the World Wide Web has many sites about autism, but for us, milestones.org was a bridge to help get our daughter to where we are today.

For example, we found local resources, references to services and most importantly a notice about a parent training series. This series became the foundation of that plan that we were longing for. It was at that Milestones training where we connected with other parents and realized we were not alone. We were presented with techniques that we could practice and use to reach Cora. We were shown how to motivate her, how to break down play tasks to small steps to build success and eventually implement techniques to help her expand her language and social skills. Most importantly, with Milestones, we were provided a safe place to ask questions and knowledgeable people to help answer them.

Over the next few years, through doctor appointments, therapy social groups, token boards, PEC charts, etc. — we are where we are today. And through my daughter’s hard work and support from Milestones, we can tell you that although it was not a journey that we asked for, it is a journey we were able to navigate because of the accessible and affordable resources and training from Milestones.

Even now, when I start to stress about what my daughter’s transition to adulthood will look like, I know we will not be on this road on our own. I know I can reach out to the phenomenal team at Milestones and ask them for guidance and support.

-Carrie Gedeon

[Opening photo: multipleXposure photography]

My Milestones: The Irvin Family

Our autism journey began during a routine checkup when our son Miles was 3 ½ years old.

When the exam was over, and Miles looked good and healthy, the doctor asked if we had any concerns. My wife asked a simple question about Miles’ speech development. Yes, Miles spoke and answered questions, but he never asked questions and most people didn’t understand him. There was never conversational speech. She mentioned his uncanny ability to mimic and recite entire episodes of his favorite shows, unexplained meltdowns in the car and on shopping trips, and his amazing talent of writing and drawing in the exact fonts of original logos he saw.

The doctor mentioned “the spectrum” during the appointment and recommended testing through the county. My wife asked, “What spectrum?”

My wife didn’t leave the appointment with pamphlets, guides or referrals. She left stunned with the realization that there were medical terms for some of Miles’ behaviors. She had a million questions and no answers.

Within days, we Googled everything we could on Autism Spectrum Disorder (ASD) and asked many questions. Unhappy with the county testing experience, my wife was certain we should find specialists to evaluate Miles before letting the school district make decisions on his education. We are forever grateful for recommendations to see Dr. Christine Barry and Dr. Nancy Roizen at University Hospitals for initial testing and diagnosis.

Years of Applied Behavior Analysis (ABA) therapy, physical therapy (fine motor), intensive private speech therapy, in addition to school programs during preschool and elementary school, followed. These were intense, stressful years for Miles and our entire family, but critical components to his development and success in a typical school setting, which was our goal for him.

We celebrated progress, agonized over setbacks – Miles stopped walking down stairs, wouldn’t go on playground equipment, became a very restrictive eater, had severe meltdowns if we drove on certain roads, developed unexplained rashes and sensitivities to fabrics and odors, for example.

For me, once I learned of my son’s diagnosis, I quietly discussed it with some close friends. It’s not something that you share with everyone as you try to face the tidal wave of emotions and worries that wake you in the middle of the night. But a friend told me an encouraging story about someone she knew with a 6-year-old son with autism. We set up a lunch and I was amazed to learn how similar his son had been at Miles’ current age.

This friend cited several therapies with acronyms that I had never heard of before. He mentioned that Milestones Autism Resources had been a big help to him. Since we were definitely in need of help, I visited the Milestones website and couldn’t believe the amount of local resources and activities listed. When we learned Miles qualified for Extended School Year (ESY), we used Milestones’ guidance and enrolled our son in Friendship in Teams (FIT) Camp.

I will never forget the feeling I had as I walked out of the building, leaving Miles on his own with people he had never met before. I was worried, even a bit scared, that I would receive a call that he wouldn’t be able to make it through the day. But that call never came. The staff at the camp knew exactly how to work with him. I went from feeling alone to feeling like I was a part of a sub-culture – almost a movement – to help these children become all they could someday be.  It was an amazing feeling of empowerment compared to the lack of control we had just experienced a short time earlier.

My first year at the Milestones Autism Conference was just as powerful.

Here was a large group of professionals and parents who spend their lives helping these children and young adults. In just days, I learned more than I did in the previous year of doing autism research on my own. I had contacts in every aspect of what Miles would need. It was exhausting, but rewarding and empowering, too. I know with certainty that Miles would not be as far along in his development had I not attended the conference. I also appreciated hearing different perspectives of how people approached their care. It helped me understand that the treatments that helped my son may not impact the next child in the same way. Each child is so different, there is no absolute right and wrong in terms of solutions. I also witnessed overwhelming love, not only from parents, but also from intervention specialists and a host of others who help parents and children.

Milestones was started by parents who wanted to help each other as well other families struggling with ASD. I have met countless parents who have shared so many important lessons that I would never have learned myself. It makes life so much easier to glean wisdom acquired by those who have faced the same issues.

Many parents feel alone in this journey, but Milestones helps connect us with the incredible supportive community we have here in Cleveland. You never have to feel alone if you have Milestones on your side.

-Phil Irvin