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. 

Creating Opportunities

Dominic was so excited for today!  He and his sixth-grade classmates were going to a movie at a movie theater! What's really cool is that he will be able to order his own "snacks."  I asked him what he was going to eat.  He told me, "popcorn and pop!"  Wow, what an incredible opportunity for Dominic's class, don't you think?  When I was in sixth grade, the special education students were kept so separate from the rest of the school that we rarely saw them, much less have any interaction with them. The administration at Dominic's school goes above and beyond to make sure that he and his classmates always feel "included." Back in October, I got this e-mail from Dominic's teacher:

"I printed out 100 sign up forms for peer-to-peer this year and I got a call from the front office this morning telling me we ran out and I needed to print out more :)"

As if that wasn't cool enough, in November, I got this e-mail:

"I just got an e-mail from one of the 6th grade tech teachers, one of his groups is creating a PSA about choosing kind, focusing on Autism Awareness. The students were wondering if they could have Dominic participate in their video. It would be during his exploratory 4th hour.  I just wanted to see if him being in a video would be okay with you before scheduling anything!"

I was able to get a preview of the "script" the kids wrote. It was pretty darn awesome. I was incredibly impressed by their insight and understanding. Earlier this year, I became program director of a disability ministry. I am responsible for implementing and creating programs. Back at our picnic in July, we had a group of special needs adults that came after the food was gone and things were winding down. I instantly felt a "connection" to this group because they were just so happy to be there! They came to our bowling event in October and the gal that brought them told me, "thanks again for all of these amazing opportunities."

Dominic has been receiving music therapy for several years and I knew I wanted others to participate, so our ministry had our first music event in September.

It was so well received, I have planned another event for January!! We have had ecumenical worship services and at the beginning of November, we had our fourth special needs Mass - we had almost 50 people attending. We had three individuals with special needs doing the readings and Dominic was able to be an altar server! I am currently working with Dominic's private speech therapist on an instructional video so anyone who wants to be an altar server can!

I have many other programs in the "works."  In a few weeks, our ministry will be having a holiday event. Included will be a special needs Mass. I have gotten to know an awesome couple who have  a daughter with Down Syndrome. She has gone through all the preparation to receive her First Holy Communion. Her parents want her to make her First Holy Communion during the Mass. I feel honored and blessed that we have "created" this opportunity for their daughter. It will be a special day for sure! I can't wait!