Gail Furgeson is the current Chair of the Association’s Board of Directors. When her autistic son David began to receive services, she felt she should at least know what was expected of the parents and decided to become involved. She was asked to serve on the board and at first felt it was a heavy responsibility. She says she has learned so much from the experience.
Gail sees her role on the board as mainly to represent the parents’ point of view. She says her fellow board members are wonderful professional people who take care of the business side. She has been the chairperson for the past 6-8 years. In her role as chairperson, she depends on collaboration with other board members. Total involvement with the board is approx 10 years.
Since her initial involvement with the Association, Gail’s experience is that things have gotten more complicated and not necessarily in a bad way. The board must keep current with the laws surrounding sexual harassment and safety issues. These are issues that are relevant in the workplace all over the world and must be incorporated into the business of the board. They are just one more layer of issues to deal with.
Policy changes are always dealt with and, most recently, the issue of an aging population of handicapped demands attention. Because of improvements in health services, people with disabilities are living longer lives. It seems that they become seniors at an earlier age. The traditional senior homes are not geared toward the care of the handicapped. Now the board must consider what must be done to care for the seniors that are currently in the group homes.
Gail says the impact of a handicap on the life of your child can hit you in funny ways. You grieve at different stages for different things. It doesn’t mean that there is no life or nothing to enjoy. “There are some things that you look at very practically and sometimes you look at them very emotionally.”
Having professional staff to help is so important. Their input can be invaluable to progress and parents can gain a lot by working closely with the staff. As an example, Gail says that she did not realize that, when David was younger, she was answering for him when people would speak to him. Staff pointed that out to her. She was taken aback at first but realized that in order to encourage him to talk as much as possible, she had to learn to step back.“It took until David was about twelve years old until I came to the realization that this is who he is and he will always progress and certain things are not likely to occur.”
When David turned eighteen, it was time for Gail to make arrangements to become his legal guardian. Looking to the future can be a fear and a worry to some extent. Determining who is going to take on guardianship when you are no longer around to do it is difficult. “You are looking for that person that you feel will be very responsible but then you realize you are going to ask them to do something that they may not be comfortable with. It’s all well and good to have these things, it’s quite another thing to get them in place.”
Gail does not see the group home as an institution but more as a home setting that can provide a circle of friends and a chance for continuity of support when parents are no longer around.
The difference between a mental illness and a mental disability is hard to explain to people. Gail says that David’s levels of functioning differs from day to day and sometimes what was easy at one time is hard for him to comprehend at another. Sometimes a firm, gentle touch will serve to reconnect him if David gets disoriented. They haven’t quite figured out why it works, but it is an interesting phenomenon.
Gail feels fortunate that David was born after the generation that said a child is autistic because of bad parenting. “Refrigerator mom” was the term used to describe the type of parenting that was said to be the cause of the autism. Gail says, typically, a parent goes through the stage of wondering what it is that they have done to cause the problem. It’s a terrible burden for a parent to have.
There is a constant worry with the way that the world is changing that the current support for David and others like him will not be present in the future. The handicapped are currently recognized as “citizens and people of value” under the law. “But just because something is recognized under the law does not mean that all people will recognize it.”
If the programs are not available for David and people like him in the future, then it will be very difficult for them to lead a life of quality. Gail is concerned that if David is going to have a good life, he has to have professional care, and that must be planned for and set in place in advance.
Gail credits the original board members from the 1950s as being extremely dedicated. “They made sure that their children got the best that was available for their education and they didn’t back down.” What made them so special is that they found a way to keep their children with them and created a system to educate them. Their attitude said, “no, we are part of the community and we will be here.”
I think that is something that we have to keep looking to because, now that the education part is being taken care of, what happens for parents is that they don’t know what it is to have to struggle to get that. I know I didn’t. I thought, okay, the school’s there but I found out you still have to be involved. It’s still really necessary I think, for the parents to get together in support groups, something that we’ve had a really hard time for some reason starting in this community.
Gail knows that no one is really quite ready for a handicapped child and would like to see a support group for new parents of handicapped children. She says that many other issues have committees set up to deal with them, but parental support is not adequate in the current system.
When handicaps are kept private and considered a bad and shameful thing then there is no chance for people to get help. Gail supports the sharing of stories so that people can gain information and find hope.