My Milestones
By the age of 2, my sons were not speaking words and sentences the way other children in their preschool groups were. They each showed precocious signs of their intellectual development, such as my older son drawing and diagramming out “The Very Hungry Caterpillar” book, including writing out words like “egg,” “cocoon,” and “caterpillar.” In fact, the first time he did it at preschool I thought the teacher was joking until she showed me and my son did it in front of me. However, he only spoke a handful of words for his age, so we had him assessed and indeed he needed and benefited from speech therapy. By the age of 4 both of my sons were speaking so well my husband and I joked that it that it seemed hard to believe we were so worried about their speech.
In our case, one son has autism, while the other had speech delays that were resolved with speech therapy. The son with autism was having social communication and sensory issues that my other son did not.
I will always remember sitting at the small table with my son’s kindergarten teacher in his classroom, knees knocking, heart beating, as she gently discussed the concerns she had about my son. She handled the moment so sensitively when she suggested I have him evaluated. I didn’t know much about autism beyond inaccurate stereotypes in movies. What could it mean for my child and his future?
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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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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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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]
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