Our 2-Pound Miracles
September 04, 2013
They say autism is a marathon, not a sprint, and I have to say I agree with that sentiment. Our marathon began in 2006 with the arrival of my identical twin sons, born at 26 weeks. Three weeks later we received a call in the middle of the night that baby A was transported to the local children's hospital with a perforated intestine for emergency surgery. This meant we would visit two separate NICU’s, with two toddlers in tow to visit our 2-pound miracles, who survived despite and because of all of the numerous medical interventions used to save their lives.
Due to their extreme prematurity, we were told by the state’s early intervention providers that they were developing within limits when they "age adjusted," so when they weren't speaking, we were told that was normal. After several months of this, our sons received their autism diagnosis on the first World Autism Awareness Day, April 2, 2008. This was a few months after their sisters spent two weeks in the hospital with an infection that almost took her life. She turned 3 in the PICU while hooked up to dialysis machines. She came home a different child. Her older sister started showing signs of vocal and motor tics four months after that hospital stay. She was our only child born full term and even so, she was hospitalized with severe jaundice after receiving the Hep B shot. We brought her back to the pediatrician at three days old and wound up at the children's hospital for baby's first Christmas.
In December 2008, our oldest daughter was diagnosed with Tourette Syndrome and ADHD. In 2010, our youngest daughter was diagnosed with Asperger Syndrome, which took me by complete surprise. I was so wrapped up with her brothers that I did not notice the signs until her school had her both girls observed by the district autism specialist, who told me afterwards. This is the marathon they tell you about, but I wanted to take a moment to catch my breath.
A year after our twins were diagnosed, I brought them to their 3-year wellness check while they screamed and cried in their stroller. The pediatrician had prescribed therapy and sent us on our way at age 2. This time he prescribed more therapy. I had read about treating autism biomedically the year before but, due to our limited resources, put the information aside as something we just couldn't afford to do. I looked at them, crying and miserable after multiple ear infections and doses of antibiotics and had enough. There had to be something more I could do as I could no longer accept that this was it. How could we afford not to?
I went online and found TACA again and joined. I decided to put them on the GFCF diet as I knew I could figure it out and was not going to accept NO for an answer. There was an ARI conference, and although I couldn't afford to attend, I saw that TACA was hosting a free nighttime session, so I went and sat at the back of the room. At the very end, they asked if anyone had any questions. When I was passed the mic, I asked, "How am I going to afford this?" and started to cry. Quickly introduced to the right people, his is when TACA became a source of hope for me.
I love TACA because not only is it a source of inspiration and hope, it also is a great source of information. We started treating our boys, had a head start on the diet, and I threw myself into reading everything I could on the TACA website and everywhere about biomedical interventions. As a family of six living on a single income, the articles on "Biomedical on a Budget" were a huge help! I attended Coffee Talks, meetings and seminars for free or on scholarship and connected with other parents, who are also a wonderful source of information. My twins are now 7 ½, still nonverbal and severely affected. Their gains are slow, but they are real. We have been GFCF for over four years. I know they would not have kept moving forward and made the progress they have without biomedical treatments and our wonderful MAPS physician. One is very good at using his AAC device and just typed the phrase, " I want mom" when I took his sisters out recently. My youngest daughter is finally settling into school with the support of a wonderful aide. Our oldest is creative and funny and doing her best as a sibling. Heck, we even won a cruise this spring with Autism on the Seas, which meant we actually had quality family time (with amazing help of course)! Thanks to the support of TACA, family and our community, we have the most important things in a world full of chaos: hope for the future - and strength for the marathon.