Monthly Archives: August 2015

Am I bugging You?

 

I’ve recently been asking myself this question, how can someone who communicates so well have such a hard time being heard?

Every weekend for the last fifteen years I have worked with an amazing man. He communicates and is able to let those around him know his wants and needs, although he can be very repetitive with his requests. This is something I have understood is a part of his disability, and also a way for him to ensure he is heard and stay focused toward his goals.

Many folks who have met him comment to me that he seems quite stubborn, always asking questions. This at times may annoy those around him. They may see him as a pest, when I know he’s just self advocating. I realize that as his caregiver I’m required to be patient, but really I want others to understand where he is coming from. He doesn’t have the power or independence to just do what he wants, when he wants. When he asks for things, there are many obstacles he must get past that most folks take for granted that won’t be a problem in their own lives.

First he needs his wishes and choices to be heard, then agreed to and put into action by someone, usually a staff person or family member. He relies on others to drive him where he wants to go, to help him manage his money and spending, and to reach his goal within the time available- which is usually limited due to factors beyond his control. So when he asks “Am I bugging you? He then continuously repeats himself. I want people to have empathy and see the daily struggle and frustration he faces, and mostly overcomes to work toward the things he wants.

I don’t like to think he has to beg to be heard, and want any reasonable request he has to be agreed to, even if it isn’t always convenient. I am sure he will continue to advocate for himself and the reaction he receives from those around him will be challenging at times, but he has the same ultimate goals we all have: to live life, with liberty and freedom in his pursuit of happiness!

Letting the Light Shine by Dennis Polselli

Letting the Light Shine

Dennis Polselli

Public Relations Coordinator

“Just so, your light must shine before others, that they may see your good deeds, and glorify your heavenly Father.” {Matthew Chapter 5 verse 16}

I retired six years ago from a job I loved very much, the Disability Services Coordinator at Framingham State University. Like all jobs, there were good days and bad days, but one of the things I truly regret was not sharing some of my accomplishments with my parents, brothers, and sisters. Some of my accomplishments were covered in the Metrowest Daily News, and some coverage even appeared in the Boston Globe. The college had requested that I establish a Disability Services Office in 1994, because they had no formal department to coordinate services to provide accommodations to students under the Americans with Disabilities Act [ADA] One area of difficulty was to coordinate 2 ASL interpreters per student for deaf students attending class. At times I had difficulties getting ASL interpreters, but this was a necessary accommodation. I came up with a position similar to CART Reporters, called a computer transcriber. My staff and students transcribed lectures from the professors word for word.

In 1995, I started the MetroWest Radio Reading Service which provided the reading of daily newspapers, magazines, and books. There were forty volunteers who took part in this program, including my wife Donna, a nurse, who read the supermarket guide with healthy tips included. When the college asked that I reduce some of my expenses, I went to the Women’s Prison at Framingham MCI, and we were able to involve the women there in recording in English and Spanish for the Radio Reading Service.

There is nothing wrong in retelling stores of accomplishments when you do so with humility and give recognition to others who have contributed to those successes. I realize that now, too late to share with my parents, but not too late to share with the rest of my family.

In 2010, I joined Community Autism Resources. They have told their stories, but could use a louder voice to proclaim just how good they are. CAR was established in the early nineties by parents of children on the Autism Spectrum. The agency has provided field trips, sensory friendly movie experiences, a nationally recognized ASD Symposium, co-hosted by Dr. Barry Prizant. CAR and Dr. Prizant have also provided an annual retreat for 20 years for parents of individuals on the Autism Spectrum, because, remember, the staff knows what you are going through. The mission statement of Community Autism Resources is, “A place to start….A presence on your journey.

It is important to let your light shine. How can we all help let the light shine? On Saturday, September 19th, at Francis Farm in Rehoboth, MA, CAR is holding its annual Hearts and Hands Walk for Autism. This year we have also added a 5K run. It is a family day of fun and activities designed to raise money to further our programs, services, and activities. All of the money raised remains in our community.

For more information on this day, please go to our website: www.community-autism-resources.com. Thank you.