Crunchy Life in the Autie Lane

Bowling Green State University will be holding their 12th Annual Autism Summit of Northwest Ohio on June 14, 2013. Please click HERE to register and attend!

I had such a wonderful experience working with Anastasia Brown to help spread awareness of life with autism. This summit sounds so amazing and I am so sad to miss it but I will be in the hospital (I have a c-section scheduled a few days before). If you attend, please take pictures and/or leave comments below to tell me about your experience! I can attempt to live through you! :)

Here is my interview with BGSU:

Meet our cover model, Javin, and his mother, Joy.

This year BGSU is hosting the 12th Annual Autism Summit of Northwest Ohio, marking 12 years of providing information, resources, and support to educators, parents, and caregivers. This year’s brochure featured Javin Brunnelson, a six-year-old diagnosed with autism. He lives in Maryland, loves swimming, horseback riding, and trains. Javin has an older sister, and a little brother due to be born any day now. We asked Javin’s mother, Joy Brunnelson, to share some of her thoughts for parents who have a child newly diagnosed with autism.

Javin was diagnosed four years ago, and is thriving now. When he was born, however, Joy didn’t anticipate having autism in her future. “The plan we had when Javin was a baby was the same as other parents who have children,” she said. “We had our expectations, our hopes, our dreams for him.” The biggest change for her has been learning to measure her happiness and successes in different ways than she planned.

Having a child with autism is different for every parent. For Javin’s mother Joy, autism means fluidity, celebrating small milestones, and learning to communicate without words. When Joy first heard his diagnosis, she wasn't surprised. “I knew that he exhibited signs of autism almost a year before his diagnosis but it still takes your breath away when you hear it. The tears didn't come until hours later, which made me feel guilty...why was I crying when I had an answer and I expected it? It took me months to come to terms with the fact that even though I loved my son as he was, I needed to mourn the loss of the expected childhood and life that we all assume will come with having our children. Through the first year, I went through a whole host of emotions; I felt relief for having ‘an answer,’ I felt sadness for the uncertainty of Javin's future and my own, and I felt anxious for being in territory where I had no road map. I was ready to dig in and start researching, which I still do constantly to this day but I found myself quickly overwhelmed.”

A lot of parents feel overwhelmed when initially faced with a diagnosis. Autism is a spectrum disorder, so it isn’t always clear what you and your child will face as the years progress. “One of the biggest challenges with autism is that it is ever changing for Javin.” Once Joy felt she had a handle on his symptoms and routines, it would change. “Unexpectedly, he started to show other symptoms and drop off the symptoms we already knew how to handle. It ebbs and flows.”

Joy’s best advice for facing this uncertainty is to find a community or support group who understands and bolsters you. “It is the best way to get information, it is the best way to not feel alone, and it is lifesaving. If there are support groups in your area...join them! Join Instagram and look for the hashtag #autism and begin to friend those people, follow autism blogs, follow autism pages on Facebook. My closest friends are all online, and they are Javin's biggest supporters and mine! They encourage me when I need to vent, they lift me up when I am too weary to do it alone, they cheer with me at the new milestones you learn to celebrate, and they laugh with me about the quirks that spectrum kids bring to our lives. If you can find parents in the flesh, please do so! I do have some ‘real life’ friends as well but with not always being able to make it to parties, events, play dates-- because that is just the reality of autism-- the online world has changed my life. I can post at 2 a.m. and invariably someone will be up also to lament with me at the woes of being up (again) because out his place in this world and be happy in his niche. “

She also cautions to beware of well-meaning but ultimately undermining friends and relatives. As with any parenting, someone has advice that may or may not apply to your child, and that you may or may not want to hear. For Joy, “We still have a family member who refuses to follow our schedules and routines when left with Javin because they want to prove that Javin is ‘just fine’ and doesn't need accommodations, leaving me to deal with the impending meltdowns. We also have the family member who constantly questions if I have Javin involved in enough therapy and they read articles about a child with autism that has greatly improved with this or that, and I am called into question as to why I am not doing the same things for Javin. And, of course, there is the family member who holds out hope that Javin will ‘outgrow’ the autism and/or will be a gifted genius/doctor/scientist and feels that sharing these hopes with me will give me hope. We even have a family member that appears to be jealous of Javin's diagnosis, feeling that he receives too much attention and wanting that attention for themselves. As Javin's mother, I just want him to be happy. I want him to carve out his place in this world and be happy in his niche. “

There are also doubts. This is where a support group or friends who understand what you and your child face can really help. “I think all parents could say we make mistakes. I wish I hadn't been easily swayed by the opinions of others to define Javin and what his life was to become. I wish I had stood up for myself as a mother and for Javin sooner than I did. I wish I wasn't as hard as I was on Javin the first few years. I wish I hadn't believed everything I first read about autism and doubted my own abilities as Javin's mom (the person who knows him best). I wish I had asked more questions. But in the end, I stand here proud of who I am as his mother and am moved to tears in the work Javin has accomplished over the years to be the awesome (or au-some) kid that he is today. I wouldn't change that for the world.”

Joy is extremely proud of her son. Her “biggest reward is Javin himself. He is a lovable, amazing child who has brought laughter and sunshine to our lives. Javin isn't autism. He has an awesome personality, a great sense of humor, and is one active little boy! Autism is a part of him but it doesn't define him.”

To hear more of Joy’s thoughts on autism, raising Javin, and to connect with a community of other parents of children on the autism spectrum, visit Joy’s blog at www.speakautism.blogspot.com.

-Written by Anastasia Brown
University Outreach
419-372-7872
afitzwa@bgsu.edu

http://outreach.bgsu.edu/autism2013/