A Caregiver's Advice to Families: Open the Door

Tuesday, July 2, 2013 View Comments Autism Speaks

This blog post is by Mark Ellis, a staff member at Another Step and an honorary member of the Dyer Family. He recently took a trip to the FedEx400 Benefiting Autism Speaks and you can read more about his experience here

I first met Jeff almost 19 years ago when I was taking a college course that required community service hours. He was only nine at the time and was a handful to deal with; already knowing exactly what he wanted and how to get it. After my hours were completed, Another Step (this is the agency that provides services for Jeff), offered me a part-time ‘job,’ but it never has felt like one.

Jeff has always had a great support system, from his unbelievable family, to Diane Meyerer, a true advocate for Jeff’s education; and Another Step, which has grown in the services they provide to meet the needs of Jeff and his friends as they have grown older.

19 years ago, did I ever truly think I would be able to take Jeff 200 miles from home, to stay in a hotel overnight, and attend an event with approximately 100,000 people? As positive all of us in Jeff’s extended network have been, I don’t think any of us would have thought it possible. For as long as I have known Jeff, his family has opened every door and let Jeff try every experience that HE wanted. They have leaned on the support system around them and let Jeff grow and mature into the amazing man that he is today. There have been public transportation trips of every sort in New York City, professional baseball games, trips to Rockefeller Center and even a Broadway show. People like Diane at Franklin Avenue and Judy at Another Step have challenged Jeff, constantly pushing Jeff to reach goals most wouldn’t think possible.

We hadn’t planned an overnight trip until the FedEx 400  and I felt honored that Jeff’s parents would trust me to take Jeff so far away for away on a trip. I felt pleased that Another Step was able to sort out the logistics and pure joy at the effort Dover International Speedway, NASCAR, and FedEx took to make us and all of the other families welcome to such a big event. Jamie McMurray, Carl Edwards, and Coach Gibbs all took the time to come and welcome us to the race! Lastly, I felt so special at the VIP treatment we got from CJ, Ann, and Christine from Autism Speaks.

In the hotel on Saturday night we were resting up before the busy day planned for Sunday. Jeff was already planning next year’s trip back to Dover(Next year 4 tickets so he can bring his friends and 2 nights in the hotel!). I asked Jeff, as I have for the last 19 years, ‘How about I drive you to Walt Disney World?” Jeff is not very verbal, but I always got a ‘NO’ followed by a head shake to let me know he meant it.

This time, in a hotel room in Vineland, N.J., I got a ‘Yes’ followed by one of the biggest smiles I have ever seen. I guess I finally wore him down enough to take him to my favorite place on earth! I have already had to repeat(at least 100 times)…

                -Leave Saturday 8am
                -Drive to North Carolina/South Carolina boarder
                -Sleep one night in hotel
                -Leave Sunday at 8am
                -Drive to Walk Disney World
                -Arrive 5pm
                -Go to parks Monday, Tuesday, Wednesday, and Thursday
                -Leave Friday at 8am
                -etc. etc. etc.

This one door opening for Jeff to go to the race has opened a bigger, better world for Jeff. So to all of the families reading this, OPEN THE DOOR for your loved ones. Let go a little and learn to lean on the support around you. As one of the speakers said in Dover, ‘It takes a village to raise a child.’ Please let people like me help you and your child reach the goals you all deserve!

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