When I blogged about the Dedication in Love Letters from a Duke, I ended up meeting Joey, who also has a son with autism. We’ve exchanged emails and some of you even pitched in and helped Joey with her Autism Walk fund drive. Joey recently emailed me and asked for some way to say thanks to all of you who pitched in and I asked her to join me here in my blog and write about her experiences so every one of you would know how much your donations, prayers and good thoughts helped her and so many other families.
So here is Joey:
There is a link on the Autism Speaks website that very eloquently states, “Why We Walk.” It talks about accelerating the pace and progress of autism research. About the sense of hope and determinedness at the Walk events. That the sheer force of combined passion, commitment, and numbers will move the field forward to find effective treatments and a cure for autism. It’s really a beautiful statement. And I agree that it is a great reason to raise money and walk at events like the one we joined in Detroit.
Why do I walk?
I don’t know too much about your little guy, but when Gabriel was two he could say about 5 meaningful words. He had tons of words, but they were all labeling or echoic. In May 2006, he was finally diagnosed with high-functioning autism. At 2.5 years old, he was labeling, but not speaking meaningfully. He did not point or wave and had fleeting eye contact at best.
There was no one there after the diagnosis to tell us what to do or where to go to find services for our son. We heard about how important early intervention was, but had trouble navigating the maze of services. Only because of my mother’s 36 years in social work did we learn about the services available through our county. The resources in Toledo were—and still are—scarce.
We discovered Applied Behavior Analysis and PLAY/Floortime therapies shortly before Gabriel was diagnosed. We immediately set up an ABA/Play program in our home. It was a tough road but he quickly made amazing strides. A whine became “Up! Down! Milk!”
In November, I attended an ABA seminar. Shortly after, Gabriel and I began an intensive parent/child ABA training program. The program was called GIFT of Hope and was 5 days a week, 3 hours a day (plus homework!) and a three hour round trip!
I remember calling my mother in tears after the third day of the program. Gabriel had a full-blown tantrum that lasted 28 minutes! But when he graduated from the program I distinctly remember the feeling of empowerment. The tantrums and other behaviors had greatly diminished and I now knew how to work with my son. I could use relaxation techniques and other behavioral interventions to combat or prevent tantrums. And Gabriel learned how to communicate his wants and needs effectively and his language and social skills were increasing daily!
In March, shortly after our graduation from GIFT of Hope, my husband, Garett, handed Gabriel a sippy-cup full of chocolate soymilk. Gabriel grabbed it and headed on his hoppy-skippy way. And I remember this part so vividly. Something made him stop in his tracks. He turned back to Garett, looked at the milk sloshing up the sides of the cup and then into his Dad’s eyes and asked, “Where’s the lid?” After the tears—there were a lot, but they were happy!—we joked then that we should put the phrase on a T-shirt.
I walk because I want to share Gabe’s story. And it’s not over. Through countless hours of therapy, loads of debt and an altered diet, he is doing remarkably well. He is in a typical pre-school, has friends and talks—literally—non-stop. I hope others will learn from or find comfort in Gabriel’s journey. That’s why I wrote to you when I read your dedication. We need to share our stories and support those who put themselves out there. You made me feel empowered gave me a bigger voice. Most of all, I found comfort in the story of a new friend.
We have received several donations from your fans. I want to thank them personally, but I don’t have access to their email addresses even though they sent money to our page! Please let them know they made our voices even stronger! The Detroit “Walk Now for Autism” event had over 7000 walkers and raised over $520,000. I have added a picture of our team. My husband, Garett, and I are on the ground with Gray and Gabe is behind me with our “Jessica”, Becca.
Thank you again for generously including our story on your page. Your willingness to share with others makes us all stronger. Please let me know when you are out this way. You have a fan and a friend for life.
I am always willing to share or try to help parents whose children are newly diagnosed, especially those who live in Michigan and Ohio.
My list of beliefs:
I believe that early intervention is key. Time is precious. If something about you child’s development is troubling you, make an appointment their pediatrician. Today. If you don’t get a solid response to your concerns or a referral to a specialist, make an appointment with a developmental pediatrician yourself. I spent over a year listening to my pediatrician tell me there was nothing wrong with my son, that I “was neurotic” and that children with autism “never give eye contact or smile”.
Quality and quantity are important. Intensive therapy (ABA!!!, OT, SLP, Play, RDI) for as many hours as you can manage (recommendation is between 25-40) is priceless.
What goes in affects what comes out. A healthy diet, low in sugar, high in organics can benefit all children and a GF/CF diet does work for some people with autism.
What a beautiful story
I love hearing that so many people came out and helped a fellow human being. Being a mother of a high function austic boy myself, I can sympthathize. I got the most wonderful help from a home nurse, and then a center in my hometown, but, sadly, the center has disbanded since two years past. They were a godsend to me, changing my son into a boy with fourty words, to a boy who speaks complete sentences! God speed and good luck.
I really want to thank Joey for dropping by and sharing her story! And to all of you who share this tale, my heart and prayers are with you. Let’s hope they find some way to heal and cure our kids. Wouldn’t that be a wonderful miracle?
Elizabeth, a story of courage and perseverance and sharing of expertise. I have a friend with a boy who’s high-function autistic. They almost left it till it was a little late, but then she intervened aggressively, and he’s now in grade school at a standard public school.
Joey’s story brought tears to my eyes! Thanks for sharing, Joey (and Elizabeth!). I hope all children get as much care and attention as you have given your kids. I pray that research finds the treatments that work for all!