Thirteen years ago, I gave birth to my daughter, Jordyn. At that time, I knew very little about autism. If you would have asked me what I knew, I think my response would have been something like “Isn’t that what Rainman had?”
When Jordyn was 24 months old, that changed.
I heard the most difficult words I’ve ever heard in my life: “I think your child may have autism.” I remember the day like it was yesterday and I can honestly say I’ve never felt that kind of hurt in my life. Ben and I cried for a day and then got busy. You name it, we tried it! By 26 months, Jordyn was doing 40 hours of ABA therapy a week, speech therapy, the gluten/casein free diet and many, many more things.
We were seeing gains in several areas, but we still weren’t getting language. Language was what I wanted more than anything! So, when Jordyn was almost 5, she and I moved from Missouri to North Carolina for a year so she could attend a private school specifically for children with autism. Our hope was that she would learn to talk. Ben stayed in Missouri due to his job and flew to North Carolina each weekend.
To say it was a difficult year would be a huge understatement. During that year, Jordyn began having medical problems. She started having extreme anxiety to the point of panic attacks. Nothing we did would calm her and she would go days without sleeping. She looked terrorized 24 hours a day. I wanted to give up.
But giving up wasn’t an option.
We moved to Atlanta a year later and kept searching for answers. Accepting “that’s just autism” as a reason for her pain, anxiety and panic attacks was not an option I was willing to accept. As we continued figuring out the medical problems behind the autism, she started improving. The look of panic on her face started turning to a look of content. At that point, I realized a happy child was my ultimate goal and we were achieving it.
Through my autism journey with Jordyn, Talk About Curing Autism (TACA) has been a lifeline for me. TACA’s goal is to provide parents with education, support, and information to help children diagnosed with autism be the very best they can be. Seven years ago, I started volunteering for TACA by starting the Georgia TACA Chapter. I wanted to help families find the information and treatment options for their child. TACA Georgia supports families living with autism by holding Autism Learning Seminars and Coffee Talks in Johns Creek, Cumming and Roswell. Autism Learning Seminars feature expert speakers on a variety of autism-related topics while Coffee Talks are an informative gathering for experienced and new parents alike to learn and discuss new information about autism as well as share stories about their children’s hurdles and triumphs.
Autism can become very isolating for families. Taking part in typical everyday activities such as going out to dinner, attending an event, or even going to the grocery store can be extremely difficult for a child with autism. TACA Georgia works to get local families out in the community by hosting family events throughout the year.
It was through TACA that I was personally introduced to music therapy. I had been on the autism journey for years and thought I had tried pretty much everything with Jordyn. Jamie George was a speaker at one of our TACA Seminars and as I heard her talk about music therapy, I thought to myself “how have I not tried this with Jordyn yet?!” Jordyn started music therapy soon after that seminar and we quickly started seeing the benefits. Jordyn loves music therapy and I wish I had started it sooner with her.
Jordyn is now 13 years old and while she still has many challenges she has come so far.
She once had a look of panic 24 hours a day and she now has a smile.
She was silent until the age of 7 and she now has words.
Her speech is not close to that of a typical 13 year old but she is able to talk. That alone feels like a miracle to me that I will always treasure! Jordyn now says the words I waited so long to hear… “I love you.”
People often ask me what advice I have for new parents receiving an autism diagnosis. The main thing I say is don’t give up. The autism journey will be long and it will be hard but it will be worth it. Enjoy every accomplishment your child makes, even if it seems small. If you have a child with autism or know someone that does, TACA can help. www.tacanow.org