Autism Awareness Month

Monthly Milestones | April 2018

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The #PowerofPersonal – A Collection of Stories from the Local Autism Community

At Milestones Autism Resources, we are celebrating Autism Awareness Month by sharing the personal stories of real families and advocates in the local autism community. Join our #PowerofPersonal campaign by sharing your unique autism story on social media this month!

Lisa Danielpour, Milestones client and volunteer

“My husband and I gave alot of thought over the years about how and when to tell our son that he has high-functioning autism, or Asperger’s, because we wanted to make sure that it didn’t become a label that he felt would define him, that he would know he has all the potential to do what he wants to do, and that he should feel great about himself just as he did then.

So we ended up deciding that I would tell him when we were away on our annual family beach trip because it’s such a special time together and very relaxing. So my son and I took a wonderful walk along the beach and I talked to him about all the wonderful things about him and then I talked a little bit about some of the challenges that we both knew he had struggled with and was still struggling with. And then I gave him that bigger picture of “this is autism” and told him that I didn’t want it to be a label that would define him.

For all that worrying and stress, he was like, ‘This really helps me. Now I better understand who I am and why I have the struggles that I do. It’s like you put all the puzzle pieces together for me.’

Recently, as a young adult in perspective, he said, ‘It’s kind of funny that I really thought it felt like puzzle pieces since puzzle pieces are the actual symbol and icon for autism.'”

Phil Irvin, Milestones, Board Member, and 2018 Benefit Honoree

“We were always open and honest with our son about his autism. Since he was diagnosed before his 4th birthday, he’s heard the term for many years and understands it impacts people in various ways. We always explained the truth that everyone learns differently and everyone has their own personal strengths and challenges as well. So fortunately it didn’t need to be a one-time or major discussion. We also used the ‘benefits’ of autism like his incredible memory and attention to details that others miss as positive attributes.

A parent’s role to advocate for their children is not optional, it is essential. It absolutely makes the difference between enabling your child to live life to the fullest they are capable of, compared with never knowing how much they might accomplish if only they had better supports. Many schools, teachers and administrators have good hearts and the best intentions, but no one will ever care for your child like you do. Time is of the essence and those precious early years of school and development can’t be re-done. There is no time to waste. So in addition to all of the extra things ASD parents have to contend with, they must also be firm and forceful advocates for their children. This is not limited to school, but everywhere and all the time. Each day is a potential breakthrough, just waiting to happen, but if you don’t set them up for success, it won’t happen on its own.

The sad thing I sometimes see is that parents are either so overwhelmed or believe their child will grow out of it. Advocating can be THE difference in a child’s life so while it takes work, please embrace it, for your child’s sake.”
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Awareness After April – What You Can Do For the Autism Community Year-Round

Autism Awareness Month is a great time to educate yourself about autism, spread awareness, and to support those impacted by autism. However, these efforts do not have to end when April does, and can still be very impactful throughout the year. Milestones has provided some effective ways in which you can participate in autism awareness and continue to support the autism community all year long.

1. Educate yourself – You may have heard of the phrase “Each one, teach one.” Once you learn information about autism, it would be a great duty to help others become more knowledgeable as well. It is also very important that when you talking to people that you are providing accurate and up-to-date information. As an educational organization, we can attest to knowing the importance of having accurate and evidence-based information about autism-related topics. One of the ways that you can educate yourself about autism is through online research. Be sure to check out our resource center  to discover more than 1,400 resources with a special focus on resources in Ohio.

2. Get Involved – Volunteer your time to further the mission of organizations who are dedicated to helping people on the spectrum. Many organizations heavily depend on volunteers as they can be a huge factor in making projects and events a success. It can also be a fun and meaningful activity to do with your loved ones, allowing you all to make a difference in your community together. Volunteering can be as simple as helping out with office work, providing special event assistance or serving on a planning committee. You can get started with Milestones, as we are always looking for volunteers year round.
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Ask the Expert – Awareness to Action: Building a Strong Voice Through Self-Advocacy

My name is Sondra Williams, I am a wife, mother, grandmother, national speaker, and advocate for myself and others. Lastly, I am Autistic. Autism does not define me; it describes only a part of me.

During Autism Awareness Month, I pause and reset my thoughts as I begin to digest what awareness means to me in regards to autism. Awareness has been around for many years now, so you would think it would be profoundly understood by now. Yet, that is far from my truth.

There are so many voices with various messages from “Defeat” and/or “Cure Autism,” to highlighting neurodiversity and able-istic viewpoints. I hear the terms over and over of high functioning versus low functioning, adding label upon label to define this complex disability or as some say difference.  So, autism awareness becomes a huge question left unanswered; what should I believe and what camp of thinking do I support?

As an Autistic adult who travels to teach and speak, I meet many teens and young adults who simply struggle in regards to self-awareness and self-advocacy. Many have no clue outside of the diagnostic label what autism is and how it affects them.  If one does not know how something affects them or have the vocabulary around their disability, how can we expect them to become great advocates? We must empower their voice through knowledge and teach them the vocabulary around their disability.

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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, 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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