By Becky Estepp, TACA Media Manager and Moira Giammatteo, Family Scholarship Manager
Parents ask us all the time about the “Window.” You know, that window of opportunity you have to help pull your child out of the world of autism and into our world. Many are worried that the window is either closing or is already firmly shut.
Many parents despair when they hear about new treatments and they wish they could have implemented them when their child was 3 years old. Or new therapies are introduced that seem to address a deficit that previously nobody thought to treat.
This leaves parents wondering – Am I too late? Is it worth it to even try?
Well – we would like to share a few stories that illustrate to us that the window is always open.
Consider Chris Bastian and her son Joe. When Joe was diagnosed with autism, in the late 70s, Chris was not given much hope for his future. She felt that something was physically wrong in addition to autism, but had a hard time convincing doctors to help. She knew that he was in pain, which was influencing his behavior and ability to learn.
Finally, after years of looking for solutions it was discovered that Joe had a mitochondrial disorder and severe osteoporosis. The GFCF diet was critical for Joe. Chris had tried it when he was 7 and then again at age 24. The diet helped ease his pain, so his behaviors improved.
Then when his osteoporosis was treated, it improved his mental capacity. After treating the underlying medical issues that Chris had always known in her heart were the root of the problem, Joe began to speak. Now at 30, he’s conversational. He even uses his cell phone to call his mom to say, “Hi mom, I am at the mall. I am going to eat lunch with Pam. I will see you in a couple of hours.” Chris says that everyday that her son speaks to her is a gift.
We asked Chris what advice she could pass along to parents who are just starting this journey and also to those of us who have been on this road a while. She feels there is no proof there is a window, and that you can make progress outside of the ages 3 to 5 years.
Chris mentioned that she, at times, felt overwhelmed. Thus she took a significant amount of time off from researching. After she recharged, she renewed her search. Chris strongly feels that science is evolving and that no scientist, therapist or doctor can ever predict a child’s future. She also says that the brain is amazing and if adults with strokes can recover, there is no reason not to hope for our kids.
Then there is the Fleischmann family. Carly Fleischmann is a 13-year-old girl with autism who has learned to communicate by typing independently. Finally, her parents are able to find out Carly’s thoughts and feelings through an alternate form of communication.
This didn’t happen overnight; it took hard work and dedication. Carly’s story was broadcast on ABC News and created such a sensation that they had a follow-up story where she answered questions. A viewer asked, “What can parents or teachers do to help their children with autism?” Carly’s response, “Never give up.” And finally, “Believe in them.”
This echoes exactly what Tito Mukhopadhyay told an audience at a Los Angeles conference for Autism six years ago. If you have read Portia Iversen’s book, Strange Son, you will know that Tito was once thought to be “one in a million” or a miracle since his form of autism was labeled severe or low functioning. Well it looks like Tito wasn’t one in a million. Dov, Portia’s son is now able to communicate as well. Portia has created an online social networking site for sharing information about helping non-verbal and “low-communicating” individuals with autism to communicate better at www.strangeson.com.
If they can achieve the impossible, then why not our kids too?
Dr. Jeff Bradstreet, a pediatrician who specializes in autism, tells of a patient in her 30s who was living in a group home and was unable to get around independently. After she started the GFCF diet and nutritional supplements she was eventually able to move into an apartment and get her drivers license.
These stories are not unique. Yes, there is great improvement to be made when children are very young, but it does not mean that it all ends at 5 years old.
Since we are both mothers of boys who are turning 11 these stories have a special significance for us. They remind us that time is not our enemy and we haven’t missed the window. Research is being done every day. Advances in science and medicine may offer us treatments we never dreamt were possible. As tiring as this journey may be, there is no reason to give up hope. There are new windows opening every day and we want to make sure we are out there looking for them.