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I am not saying they do not exist. I am not saying they are not out there. What I am saying is I would like to see more. What I am talking about are more professionals who are involved in advocacy groups. Recently, I attended the Council for Exceptional Children’s (CEC) conference in San Antonio, Texas. It is the largest special education conference I attend every year. Since my regular involvement started 5 years ago, the conference has attracted anywhere from 4 to 8 thousand people each year if the numbers I have heard are correct. Most of these are teachers who deal with special education. Over the past several years the topics have been vast with many sessions focused teaching strategies, challenging behaviors and many sessions specific to Autism.

This is understandable. Challenging behavior is difficult and many teachers come out of higher education ill prepared to deal with the types of behaviors they are asked to face in a classroom. In addition, who can deny the importance of the topic of Autism as the numbers start to skyrocket into epidemic proportion? These are important subjects and need to be addressed. What has however dawned on me is that we could use these teachers to become more involved as advocates. I know…I know, one more thing to add to an already very heavy load. Nevertheless, one thing I know, teachers listen more to teachers then anyone else. Most other professional groups are the same way.

I am guilty of not being fully involved. For almost twenty years I worked in the field of disabilities before having my son Tyler who has Fragile X. Most of those years, I was involved with traumatic and acquired brain injury. I spoke at several support and advocacy groups but did not attend regularly nor get directly involved. I made all sorts of excuses. “I deal with it every day and need a break.” “I already give through my work.” “I want to keep a professional distance with the parents.” I regret to say I was wrong. I should have been more involved. I should have advocated better for my consumers. After Tyler’s diagnosis of fragile X, my wife and I have become very much involved in advocacy and support groups but they are mainly made up of parents like us. We are fortunate to have an amazing network with great professionals who trumpet the needs of our kids before their peers but we need more!

However, not only us, but also every disability group out there. I challenge all the professionals reading this to get more involved in your passion…whatever and whoever that may be. The parents need you in their meetings, at their fundraisers, at your conferences in front of your peers! After several years of not seeing one session on fragile X at the CEC conference there was one this year. Other syndromes also had one session representation. Down Syndrome had 5 sessions. We need professionals to become involved and share what you know to be working. Evidence based practices are important but so are practiced based evidences. Please share what is working for you in your classrooms and group homes. Please answer the call for papers when asked. Please become involved in the local chapter of one of your disability support groups. My fragile x family has become so important to me. As I have heard it said several times, It’s the best group you never wanted to be a part of! But, you do! You NEED it if you are a family member. Get involved in your local groups no matter what the diagnosis. If one does not exist, start one. However, professionals you want to tie into these as well. They need you more then you can ever know. Not only did I make many excuses for years why I could not or should not…I made a huge mistake not doing it. I see that now.

Tim Geels – Mandt Faculty

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