Tuesday, December 22, 2015

Why We Participate in Research Projects

One of the very first things I did when Dominic was diagnosed with Autism, was look on the Internet for information. Oh my.  There wasn't just a few hundred resources that popped up, but about 15 million. Yikes. That's completely unrealistic to think anyone has the time to wade through all that information. I remember VERY vividly feeling 100% completely overwhelmed. Living close to a large university definitely has its "perks." After looking through the Autism Speaks website under the research section, I found a study going on that Dominic met all the qualifications for at the newly opened Autism Research Lab. I knew I wanted our family to participate, because as we all know Autism affects the ENTIRE family. Could I have decided not to have our family participate? yes, we all make choices we are not 100% sure about. Wow, am I glad that I reached out to the gal in charge! To this day, she and I are really good friends! We actually just went to a "reunion" with other families whose children have also participated in research studies. What a great time Dominic had!


I had a great time too :) One thing I have never been hesitant to do is share our family's experiences with Autism. Why not share? There is still so much to learn about Autism. There is a saying, "if you have met one person with Autism, then you have met one person with Autism." Since Dominic has had three seizures since May of this year, he is considered to have Epilepsy. Considering I knew NOTHING about Epilepsy, I have been digging "deep," into that world of research studies also. Earlier this summer, I received an e-mail from a gentleman who works in another part of the large university near our home. He was looking for participants for a research project in the Fine Neurodevelopment Lab. Dominic met the qualifications, so we went over on a Saturday morning and participated. Just for the heck of it, I told this gentleman about the disability ministry I am involved in and how we had a picnic coming up later in July. I asked him if by chance he was available to volunteer. He came early and stayed late! He and I stayed in touch and in November, he sent me an e-mail saying he wanted to "interview" me for a paper because he thought I would be able to bring a really great perspective as a "mother who is an active and informed member of the community." He and I had a really good exchange of information. I told him that I knew virtually nothing about Autism and puberty, so he forwarded some information to me! He and I also discussed Dominic's Individualized Education Program (IEP). I told him that at one of the IEP meetings about five or so years ago the speech therapist kept repeating how below average Dominic was.  Later, I talked to the speech therapist and told her that as special needs parents we hear that frequently. I asked her that when she talked to families in the future, maybe she could toss in a few "positives" here and there. It would mean a world of difference to parents. At the time, I was thinking, did I overstep my bounds? Nope, she said she was glad I spoke up. After he finished the interview and left, we exchanged an e-mail where I told him I thought I had really talked his ear off! He wrote back and said, "you gave me a ton of good information for my project. I learned a lot of great things for myself as well (such as not using the negative terminology (below average, etc) and language I use when showing reports to parents)." He recently wrote me saying there is another research project Dominic qualifies for. We are getting together in January! Awesome. 

1 comment:

  1. You are beyond an advocate for Dominic. You are a guiding star for parents because you go looking for ways to help you, your child, your family and others. I hope others get as much inspiration from you as I do. Love, Auntie

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