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Article posted: 3/22/2013 11:40 AM

Caring in action: Organization wants more understanding, resources

By Renee Trappe

Mike Baker of Schaumburg is one of the passionate parents involved in the Schaumburg Autism Society, what he calls "a simple parent support group."

Baker has been involved with the society for three years, focusing on advocating for special needs families with local legislators.

Now, however, he is about to become the state advocacy chairman for Autism Speaks. In that role, he will lead the search for advocates in every congressional district in Illinois and do what he has done locally -- develop relationships with federal and state legislators to advocate for issues important to the autism community.

But before he leaves for the new job, Mike Baker talks to us about the importance of the Schaumburg Autism Society.

Q. You, Mike, are clearly very driven to help the special needs population. What drives you?

Baker: What drives me is the love my wife and I have for our 14-year-old son, Bryan.

As a parent of a teenager with autism, with the help and support of my wife, I have made it my goal to do my best to try to create opportunities for him when he is older.

He needs a place, after he is through the high school system and reaches the cutoff that adults with developmental disabilities face at age 22 -- to learn job skills in order to be as independent as he can and not have to rely on the state. We owe him our best as parents.

Q. Tell us what the Schaumburg Autism Society does, and what its mission is.

Baker: The goal has been to provide parents with children on the autism spectrum a place to come together, to help each other raise and understand as best as they can their children -- and spread awareness to others to understand and accept people with autism.

Q. The society is not afraid to wade into politics to demand that elected officials pay attention to the needs of special needs families. What is it you want from them?

Baker: Entering into the political arena was my idea, with the encouragement of friends in the group, to try to jump-start autism advocacy in the area and provide local forums for parents to talk about issues at the state and local level related to autism.

I will be transferring that advocacy to a new volunteer position with Autism Speaks, helping the Chicago Chapter place advocates in every congressional district; to develop relationships with congressmen, senators and eventually state legislators; to push issues and legislation that are important to families with autism.

I want legislators to understand that the problem of autism is getting bigger. Our kids are getting older and will need programs like the Career Skills Institute at Harper College in Palatine to provide adults on the autism spectrum and with other developmental disabilities opportunities to learn a vocation and life skills to live on their own.

This population is getting bigger, regardless of the problems at the state and federal level. The issues and needs of this vulnerable population need to be addressed and not put off any longer.

Q. Is the society primarily focused on children, adults or both? Why?

Baker: The primary focus at first was providing a group setting, with support group meetings for parents with elementary and up to junior high age children on the autism spectrum in the Schaumburg area.

The meetings were a way for parents to talk about their experiences raising a child and to work together to navigate the tremendous obstacles in understanding their children with autism and helping each find the resources they need, which they could not get from their local schools or the state.

Now, with the age of social media, parents can do more online communication and fewer parent group meetings, but still form strong relationships with people who understand what it's like to love, understand, and raise a child with autism.

Q. People who do not have autistic family members probably do not understand many things about autism. What are the most common misperceptions?

Baker: The most common misperception is even though a child is on the autism spectrum, there is still a person inside who is capable of love, understanding and of accomplishing many great things when you make an effort to understand what autism is and look past the lack of social skills and behaviors.

All can be accomplished by spending time understanding a person on the autism spectrum and having the patience to try. You'll be surprised what you learn -- that every person is different in their own unique way.

Q. How can people who do not belong to the society help the group in its work?

Baker: People who don't have children on the autism spectrum can help by reading about autism. That way, when they meet a person with autism, they will not surprised by their behaviors and have a better understanding of the developmental disability and be more accepting of our children.

They also should understand that our children will grow up to be teenagers and adults and will need to be educated and have a place to live when parents will not be able to care for them any longer.

Q. Give me three words you wish would disappear from the language entirely.

Baker: The R word. Can't. Invisible.

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