The #PowerofPersonal - A Collection of Stories from the Local Autism Community
Posted on 04/05/18 in School by Milestones
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."
Carrie Gedeon, Milestones client and volunteer
"My daughter has brown hair, brown eyes and an incredible sense of style (who else can pull off stripes, polka dots and purple with such finesse?). She also has a diagnosis of autism.
Is she aware of all these things? Yes, as her array of headbands, eclectic closet and high self-confidence will attest.
As much as I don’t love the challenges that Cora faces, I realize many of those challenges are put on her by others who don’t know what autism is, how to relate to her, or how to accept her for her style and quirks.
I cannot expect others to accept and recognize what is amazing about Cora if she is not aware of it herself.
That is why as parents, we must prepare Cora for her future and her need for self-advocacy, the first steps were to 1) share her diagnosis with her and 2) be honest with her (and ourselves) about all the challenges and strengths that autism provides her.
For example: Cora’s amazing memory is both a challenge and a strength. Sometimes she focuses on things too much - it could be a worry, a conversation that happened 8 years ago or a joke on a TV show that she watched in pre-school. On the other hand, her memory and ability to recall details is amazing! If you meet my daughter and then run into her years later, she will likely remember your name, the event where she met you and tell you an interesting fact about the cool shirt you had on at your first meeting with her. I cannot tell you the times when bumping into people who we don’t see often, how I have had to ask Cora, “Hey, what is Samantha’s dad’s name?” Her memory and recall is a gift I wish I had!
Cora knows that autism sometimes makes things hard for her, but it also is part of her and a piece of what makes her amazing and special. She is also part of a community comprised of typical and non-typical individuals. Cora will find a place in this world that accepts her because she accepts herself and her diagnosis."
Leslie Rotsky, Milestones Conference Director
"Raising a child with autism takes all hands on deck. Along the way, my husband and I discovered that we were each good at very different things when it came to Jacob. For example, I could pour over IEP goals and objectives but that certainly wasn’t my husband’s strong suit. My husband, who is in sales, was very good at talking to Jacob’s teachers and therapists and getting to know them on a personal level. These relationships enabled us to have a stronger, more dedicated team. So, decide how you can best divvy up tasks with your spouse or other members of your support team.
Once upon a time my husband and I were afraid to utter the word ‘autism.’ Fifteen years later we are strong advocates for our son and have discovered the joys of raising a child with autism. If we can do it, so can you."
Lorraine Pennick, Milestones Diversity Taskforce Committee Member
"My twin sons, Brandon and Kameron, were diagnosed with Asperger syndrome around 7 or 8 years old. I think we began the discussion about their learning differences around age 10, when they began to notice that they seemed to be different from everyone else. Our conversation was just that they learn differently than other people and that you need special instruction from teachers and other people, to help you learn.
As the years progressed, they rebelled about being in special education classes. Brandon worked very hard to "normalize" himself and was able to get out of special education classes with tutoring support, while Kameron started a vocational track in high school, but still struggled with classwork. In those years, I fought hard and long to continue to get them the services that they needed and to keep IEPs in place. They were both able to graduate on time - Brandon received the Presidential Award for Excellence in Education, and Kameron received his certificate of completion in Construction Trades.
Fast forward to today, and we are still learning. As they mature (they are 27 years old), we continue to have constant conversations about their mental health and the issues that come about by being on the spectrum (anxiety, sensory issues, socialization in the workplace, etc.). Neither son self-identifies to their employer that they are on the spectrum. Sometimes it works against them (they have been fired), but most times, through conversations with me and other professionals, we work it out together."
Renee Lewin, Milestones volunteer
"Born, raised, and educated in New York City, our 24-year-old daughter graduated college and moved to Cleveland last year to complete what we see as the final two steps on her journey to independence: learning how to drive and training for a skill-based job. From the first diagnoses we received (as we know, ASD is often co-mingled with other acronyms), her journey has been ours and-in all candor- there were times I seriously doubted our family would remain intact. But (fingers crossed!), we seem to have come through her formative years and arrived at a place that would make any parent proud.
Unlike the Marauder’s Map in Harry Potter, there is no magical guide to a successful outcome for someone with autism. While every family’s situation is different, experience tells me that two things make it possible to achieve realistic goals.
Every family needs access to the right resources and a welcoming community. Without expert resources and a welcoming community, our family would not be where we are today. That’s what draws me time and again to Milestones. In combining those two invaluable elements under a single, deeply caring roof, Milestones is a lifeline for families who want to see their children with autism dream large…and realize their unique potential. I would have given anything for that kind of support as we raised our daughter. Fortunately, for families in NE Ohio and well beyond, Milestones is there to help."
Mia Buchwald Gelles, Milestones Co-Founder and Operations Director
"When my son was diagnosed at age 2 ½, we would bring our neurotypical daughter, 19 months younger, to all his early intervention appointments out of necessity. Sooner than we could have imagined, our daughter became an integral peer in the therapies.
When they were 3 and 4, we began to talk about our son's autism. We did not use the term at first, but instead we framed the conversation in the following way: "N learns differently than most children. The things most children learn on their own before starting preschool (like how to imitate, how to ask for help, how to have a conversation, etc.) are things that he has to be taught. While things that other children learn at school (like colors) he learned on his own." (All people have things they learn quickly and things they need to be taught).
Once our children were a bit older, we shared that there was a name for our son's learning differences. We talked openly about autism to show that it was nothing to be ashamed of. As our son grew, he learned to use that same language to explain his needs to teachers, camp counselors, peers and college professors. Our daughter has used the same framework to advocate for him and others with special needs as well."
Kevin and Steph Irwin, Milestones clients
Our son Cory, who is now 24, was diagnosed with Asperger's at the end of his 2nd grade year. By about 4th or 5th grade, my husband and I knew we needed to have conversations with Cory about his autism label. We were unsure how to go about this. We didn't want him to get caught up in being "different" from other kids his age, and we worried it would heighten his anxiety. Well, one day I came home from school and he was sitting at the computer, playing on a website called "Brain Pop", which included information and trivia about a variety of categories. He was reading about autism. He shared a few points with me, and then said, "I think I have a case of this." It was an eye opening moment not just for Cory, but also for me, because I did not realize he was capable of such self awareness.
As Cory grew older, I was continuously amazed at the way he handled his disability. Not to say that we didn't have many obstacles to overcome each school year, both socially and academically. But in many ways, Cory embraced the label. He didn't get too caught up in what others thought of him. He didn't let his disability prevent him from participating in a variety of activities. He didn't spend time wallowing in self pity. He embraced the help offered by teachers, intervention specialists, and other adults who supported him. Many of his intervention specialists labeled him an "Autism Ambassador" while in high school, and he was even quoted in a newspaper article saying, "I am wired a different way, and I don't think people should be ashamed of who they are."
Cory went on to earn his degree in Museum Studies/History at Walsh University, and is currently a grad student at John Carroll University. He continues to encounter many challenges as he transitions to independent living, but he has the support of his family, as well as the support from the services offered through Milestones and Autism Personal Coach. Cory's resolve to find success in his chosen field and make a positive mark on the world has not wavered."
A call was put out for sharing our stories. The stories of the mothers of autism.
Ours was the story of getting thrown out, the story of covering for my child, the story of trying to figure it all out.
It started out as "why would you do that’s". "Why did you just push that little toddler over?" "Were you really carrying that Cozy Coupe over to drop on that child?" It turned into thick skin and protection. A dad at Tot Shabbat once said that if my son touched his child, he would break all his fingers and mine too. The Purim Carnival jumper was not much different, different dad. Library class was really no better. And then the family functions. Sisters-in-law who hiss "keep your kid away from mine." The 80th birthday where he spat on the in-laws, and my mother kept bringing it up all evening. We were given a refund from preschool, but none from the Rec Center. We stopped going to library classes, and Mom always paid attention at the park and playground.
At school, guest Mom appearances never worked out because my son could not cope with two authority figures in the same room. He put his hand up to the sink and sprayed water everywhere. Fortunately, a different kid pulled the school fire alarm before he did.
He was suspended from elementary school on multiple occasions, with the phone call always the same. "Come now or the suspension will be an expulsion." "Yes, but my other kids are napping." We are having birthday lunch at McDonalds. Mom becomes Spinmaster extraordinaire. Big brother called and wants to leave school to have birthday lunch with you. "Come on, let’s do it!"
And then the institutions that are there to help, they are so demeaning. I went to the Clinic every school week for five years. Each week collecting a lesson to practice. Each night struggling to build a toolkit to get beyond.
And who do you talk to? You talk with no one. You know that one day, this will moderate. You know that you cannot box your child in. He will rise above, if it takes everything you’ve got. And sometimes it does. Most times it does.
And perhaps you have another child, with another special need…
Jill Lipman, Milestones Website Consultant
"Zoe was diagnosed at two and a half. The neurologist told us, “She may be this way now, but by the time she turns six, she will be a different kid. You won’t recognize her.” We couldn’t imagine how this doctor could say that; how did she know?
“Early intervention,” the neurologist told us. “That’s the key. Start therapies tomorrow, don’t wait.”
We didn’t know how else to start, we just knew we had to do something. So clinging to the doctor’s advice, we took a big breath and started moving forward.
Zoe didn’t speak much, so we decided to start with speech, maybe we will understand how her mind worked. Slowly but surely, two-word sentences became three, then four, then five. Then she wouldn’t stop talking! Cool, we jumped the first hurdle -- what’s next?
We moved through fine motor skills, starting elementary school, and personal hygiene. Next thing we knew, it’s 10 years later.
We often reflect on how lucky we were to have started her intervention therapy so early, and wonder where we would be if we hadn’t. We aren’t anywhere near the finish line of the race yet, but with the tools we have learned along the way, and the power of early intervention, we feel hopeful that our daughter can have a productive, happy life."