ODDC Banner

American Dreaming: Maggie Vance

May, 1999

Changing the world

Maggie Vance has been working for a life of good quality for her son, Dustin Young-Vance, in the community of Troy, north of Dayton.

"My goal in college, majoring in cultural anthropology, was to go into the Peace Corps and make a difference somewhere in the world. Instead of transferring to the state college and finishing my degree, I had Dustin, and it gave me my own piece of the world to change. Dustin's birth had a huge effect on giving my life direction. His disability itself has been a huge blessing to me, and given me direction on where to focus my energy on affecting things."

Public school
"When I came to this county and walked into this MR/DD [mental retardation and developmental disabilities] facility, I thought, 'Wow, this is so safe, this is so cool. ' A year or so later I started thinking, 'I had so many opportunities in my life to do cool things and to do stupid things and to do wonderful educational things, he's not going to have that in this building. He needs a less safe environment to have those opportunities. ' "

"I was learning about the laws that said he had the right to go to a public school. There was nothing in the public school at the time. While the law was there that they had to provide it, there was no demand for it, and they weren't going to create it without a demand. They didn't know that there were parents out there that were willing to send their children to the public school, until I started marching around the county with my legal pad in hand, taking notes on everything, finding out how things were working in other counties."

The school district held a meeting to decide where Dustin would attend school.

"They said, 'Where do you see him going to school and getting these goals met? ' I said, 'In the public school. ' His preschool teacher said, 'I don't think that public school placement is appropriate for him, with his behaviors. ' I looked at her and said, 'Fortunately that decision is not yours to make. '"

After Dustin moved from elementary school to junior high the Special Education Coordinator told Maggie that it was her efforts that ensured that Dustin was included in that class.

Partnerships
"Somewhere around the time he was 4 or 5, often there were people around who could affect that dream. If I didn't voice it, they would never know. I quit feeling like I was bitching and whining and realized that I am just sharing a dream, and those that don't want to hear it, don't, and those that can hear it and can do something about it will have an opportunity to do something about it."

The local school district's Director of Special Education became a valuable ally.

"At one point he told me, 'I really hate to see your name on a memo, because I know it's a problem. ' It hit me that when we're working together on a problem, even if the solution is temporary, I need to thank him. I started doing that, and that increased the chance that I'm going to get my phone calls returned. It kept us working together and enjoying seeing each other. If we saw each other, he didn't hide."

"The Multihandicapped Coordinator is a good friend of mine. I know that when she's there, I have an ally at the table. She helped me fulfill so many dreams for Dustin, by hearing what I say. I'll voice my opinion, and sometimes she'll say, 'Oh, Maggie, how in the world are we going to do that? ' Two years later it's happening. Because she's got that planted in her head, she sees ways it can be done."

Transition from high school
Dustin did go to the public school, from the first public school class in town through high school.

" I don't know if he was any further ahead academically than he would have been otherwise, but he started picking out his own clothes and telling me how he wanted his hair, and rooting for the football team like the other kids did, and being interested in other things besides his music world, and that in itself was well worth it."

As high school graduation approached, Maggie began to think about what would come next. She knew she wanted support from the school district for Dustin to continue his education, but that that should take place outside the high school, in a community setting. What about the county board of MR/DD, she was asked?

"They don't provide anything until you're out of the school district. And then it's a sheltered workshop. That's not what we want. If he gets into the sheltered workshop, his functioning level is going to go down. Therefore, that is the very last resort, and we're going to try everything else, including staying home and watching TV all day."

Managing energy
"He's still one of the pioneer kids. By the time things are really in place, he's too old for them, which is a major frustration for me. A lot of the things he's led the way for and I've pushed for are happening, but he's not benefiting from them. He is benefiting from other things that other parents opened the door for, before us. All I can do is hope that the parents who are benefiting from the things Dustin helped make happen will continue to improve the system for future generations."

"I do pick my battles, because it does take an incredible amount of energy to change things. I have been offered the opportunity to be involved with things where I just have to say, 'Someone else can do that, that's not a high priority for me right now. ' I want to see that happen, but right now I don't have the energy to deal with it."

"Sometimes anger gives me energy. Other times it's just that Dustin is impressing me so much with his existence that that gives me energy, and it's energy from joy. But I do have those up and down days."

"When things go badly, my energy will plummet, and I'll feel cynical and frustrated and think, 'Why do I keep doing this? I'm gong to be doing this the rest of his life, the rest of my life. When is somebody else going to help me out? ' Usually after a real crash you hit bottom and then you start bouncing back up again. I just wait for the roller coaster to start heading back up again."

"Through the years there have been several other parents throughout the state who have inspired me considerably. The level of passion they had helped me realize that my level of passion was okay, too."

Dustin's future
Maggie is planning for the time when Dustin moves out to an apartment. Because she knows he likes having alone time, she knows having just one roommate, or two at the most, would be best.

"The funny thing is that getting his nails cut used to be one of my big fears. Who's going to do that when he's not living with me? How is that going to happen? I would focus on the little, off-the-wall things, because the whole big picture was too scary. One day that just came to me, that could be part of his Individual Service Plan. A supported living provider can take him to do that. That's taken care of. He can move out."

"When there is a crisis situation, when parents die or go into a nursing home, or when a parent says, 'He just cannot live here anymore, ' that's a crisis and that person is automatically moved to the top of the waiting list. Because he still lives with me and I am still taking care of him, it is not a crisis. You have no idea how tempted I have been to create a crisis."

"I want him to work in the community, if not in competitive employment at least regular volunteer work, so that he is contributing to the community he gets so much out of."

"I see him playing Santa Claus, either as a paid job or a volunteer job. He already has one party lined up this year. He did eight of them last year. He's a great Santa. I see him doing that type of work. It would be nice if he someday gets paid for what he does best, which is a dream job for anybody, to figure out what you like to do and do best and then find somebody to pay you for it."

Interdependence
"My other two children keep me living in reality, as scattered and unbalanced and unfocused as that sometimes is. They keep me at more a typical level of unbalance. They keep me in check. I cannot let my world revolve around Dustin. I cannot let the family focus on him and what he needs, because everyone is a part of this family."

"Today I plan to go next door to the neighbor. In the past couple of weeks I've driven her to drop her car off for repairs or pick it up. Every time I do she says, 'I'll do something for you. ' Neighbors do that sort of thing, but today I'm going to see if she meant it."

"It would be absolutely wonderful if he could go through life with people being there for him, in interdependence, without them being paid to help his life happen, because we all need the interdependence. I wouldn't make it without friends, family and neighbors. Because his needs are a little more extreme, he would need a lot of people who could help him with different stuff."

Freedom and support
"Freedom is Dustin making choices to spend his time like he wants to, to be the kind of person he wants to be, and also being safe enough to be free. A person can't be completely free if within that freedom there's danger."

"That's why supported living and supported employment are so important, because the freedom to succeed and to fail has to include the freedom to be safe throughout your day, not to be ripped off or physically hurt."

Dream big
"I think the biggest step in advocating for your child is to dream big, reach for those stars. Even if you don't grasp them in your hands, you're reaching higher than you would otherwise. The dream is what starts the advocacy and gives us passion and the drive to keep going."

"Before you know it, your baby is 18. A few years before they turn 18, you have to start listening to their dreams. If we never dream for our children when they're little, they never learn to dream for themselves. That dream truly is that first step, then moving from your dream for them to their dream for themselves."

What dreams did others have for me early in life (or what dreams did I have for my child)?

How have those dreams grown into my own dreams for my future (or my son's or daughter's dreams for their own future)?

American Dreaming is published by a Self-Determination Project: Removing the Mask and developed through a Grant from the Ohio Developmental Disabilities Council. Contact us at: Removing the Mask, Ohio Association of County Boards of MR/DD, 73 East Wilson Bridge Road #B-1, Worthington, OH 43085. All opinions are those of Removing the Mask and do not necessarily reflect those of the Council.

Return to the top of the page.

| Home | About Us | Calendar of Events | Grants and NOFAs | Links | Publications and Products | Site Map | What's New