Tony's schooling has been a continual mixing of regular classes and segregated classes. He went to a private school from age two through kindergarten because all of the "intervention" programs were totally segregated-- they were strictly for kids with disabilities. We thought that learning to get along with other children was a more important part of Tony's development.
Later, when Tony went to first grade, we decided to send him to public school, but we wanted him to go half time in regular classes and half in special education. We thought this way he could get the speech lessons he needed and things like that but still have friends in the regular classes. The school did all these evaluations - everything from psychological testing to I don't know what. But when we got to the meeting to discuss Tony's classes, the principal simply said, "We don't do this, we don't have integrated classes for students like Tony." Of course, we argued with him about it, and after some negotiation, he allowed Tony to go half-and-half, but it turned out that this was just the beginning of the battle. Every time Tony changed schools, like from elementary to middle school, or junior school to high school, we were always told the same thing: "There are no appropriate regular classes". But we always argued with them. I just found it hard to believe there were no regular classes he could attend. By high school, Tony had been in regular classes most of his life.
Before public school, Tony probably didn't even know he was different from anyone else. Public school made him very aware of that! I mean it couldn't be any more obvious-they have the special ed. kids segregated off in a trailer! Just a few weeks after he started going to the public school he came home and said, "What does retarded mean?" It took me a few minutes to figure out what to say, and before I could say anything he looked at me and said, "It means you're stupid, and I'm not stupid." So that was pretty much how he learned he was different somehow, and somehow that difference was not a good thing. I think a lot of it was because kids in public school had just never seen anyone with special needs.
People ask me what I would tell a parent who has a newborn baby with a disability. And that's kind of a hard question. Sometimes at the beginning it's hard to think about more than one day at a time. It helps to know that there are resources out there for you, other people who can help you and your child get what he needs and deserves. I remember feeling so alone. Those things weren't available when Tony was young.
We really didn't know there was anyone out there who could help us, so we just muddled through it. We've gotten wiser since then and learned to get help through organizations like Protection and Advocacy, but we didn't have much help the first few years. In elementary school, Tony had a speech therapist who taught us how to advocate for him. She would tell us, "This is not right. You should be entitled to the things you are asking for - for inclusion and reasonable support." I worked for a while in a mental health office where I had access to social workers and educators and different kinds of services that were available, and they helped teach me how to advocate, too. You have to learn to find the resources you need, and you have to learn how to make your case - to explain to people that, yes, your child does have a right to equal access and support just like anyone else.
It became really difficult when we were at odds with the school. I was in the position of asking for my child to be included in regular classes, but with some extra support. And the school's position was "We don't do anything like that. He belongs in a special ed. class. He's got limitations." And then they'd turn around and put the people who had just said that, put them in charge of planning Tony's classes. Suddenly I had to rely on that person to plan for my child's future when they didn't even agree on where he was right now!
It's helpful to have someone outside of the school system to help advocate. I know that some people have service coordinators through the Department of Mental Health, but we didn't have anything like that when Tony was growing up. All we had was the school. As we have moved towards Tony's graduation, we have picked up a case manager from Davis County Family Supports, but we didn't have that kind of support prior to Tony's junior year. In our state, you used to have to pay for a case manager, so we just didn't go that route. I didn't realize until Tony was in high school that there were other options. But now we finally have a case manager to help us find resources.
Parents of children with disabilities are better educated now, and more visible. They're learning to advocate for the kids sooner. The parent groups seem to be getting stronger, mostly because we're networking now. And people are demanding more for their children. I think that will continue and become stronger and stronger over time. Many times I was told that the problem was that we were constantly the first parents to ask for something, like inclusion in regular classes, and a tutor to help out sometimes. We were also asking that they include him in class field trips, in gym classes, that they let him join school clubs if he wanted to. And it seemed like these things had just never occurred to them! I couldn't believe it. I hope that what we've gone through will help other parents and children.
Many times the school would say "We can't set precedent, or we don't have the resources." In the last year or so, I have finally learned to say, "I'm sorry, but that's not my problem." It took me 12 years to learn, but it feels good. Tony has a right to an appropriate education. It's important to take the time to learn your rights and what you can do. Because when you go into any school, they'll tell you what they can and can't do, not what your child necessarily needs. They have constraints in terms of budget and staff and in terms of setting precedent, but there are also the child's needs to consider. That's their problem.
Tony used to fib a lot. Once in awhile he kind of likes to sway people. We have worked with him to help him really know that "what you are is good enough--you don't have to make up things." When he was little, he convinced his speech therapist that no one loved him at home. She was feeling really sorry for him until he carried it to the point of insisting the "entire Indian nation" was in on it! After that she began to suspect he was exaggerating. I think he's a lot more honest about what he wants now. Not always grounded, but you know, he has his dreams and you just don't know where those are going to take him.
I'm trying to get Tony to say more about his hopes and dreams. That's kind of a new thing for him. A while ago he worked on a Futures plan, and I got to sit in on it. It was really interesting because he was beginning to come up with his own ideas of what he wanted to do with his future. They came up with some ideas of things he could do to work towards his goals. For example, he's interested in being a lifeguard.
Initially, most of the things presented to me about Tony's skills and possibilities were pretty limited-- pretty negative and limited. The doctors said he may never walk or talk. There were a lot of health concerns when he was first born. And then I began to realize that he had met many of those goals they said he never would. As a matter of fact, he'd gone beyond what they said was possible. We began to realize that Tony had a lot more strengths and a lot of things we could build on.
Basically Tony's just a typical teenager. He has friends in both the special ed. groups and regular groups. He's active in all kinds of sports with Special Olympics, things like that. He pretty much does all the things other kids do-he talks on the phone too much, those kinds of things!
Probably if you would talk to people who worked with me, they would say that I was unrealistic about Tony because I expected and had hopes and dreams for Tony just like any parent would - not very different from anyone else. I tended to believe that Tony could do just about anything he decided he wanted to do. I saw my role as opening the doors for him to the programs and the classes and then let him do whatever he could with it. I didn't want to just automatically say, "Oh, he can't do that." That's why I have found myself at odds with schools so many times, because they were always saying he couldn't do something without even letting him try. There was always some excuse like "It might be too frustrating. He might not be able to keep up." And I was always saying, "Let's let him try it. We don't know what he can do till he gets in there. If you don't expose him to it, he doesn't learn and he doesn't know what he can do." It is very difficult sometimes to feel like we are going in the same direction as the school, like the school and us want the same things for Tony
Tony got involved with Vocational Rehabilitation (VR) this last semester. He's a senior in high school. Tony's high school teacher arranged for VR to meet with us so I could talk with them about the process of transition from school to work. I've been working with Lillian, the VR Counselor, to decide which community rehabilitation agency to use. She has explained how the VR system works.
The vocational rehabilitation process was created to help people with disabilities find jobs and live independently. It's run under a federal law, the Rehabilitation Act, which spells out rules for the State VR Agencies. Then those agencies have offices in different places around each state.
At each office, VR starts with a "referral" of a person with a disability to the local VR office and that referral can be from parents, teachers, or from the person themselves. That's what Tony's teacher did for us. Every person, or "client" gets a VR Counselor like Lillian. The next step is to establish my eligibility for VR services - which is what they have to do before they can officially start helping you. Eligibility is not too big a deal - it includes a review of any official medical records so they can get to know more about the person and document their eligibility. Lillian said Tony's school records will work fine for that. After eligibility, the vr counselor and the client talk and generally try to figure out an "employment objective", or career choice, and how VR services can help reach that goal. For Tony, that will probably involve getting a "service provider agency" to help us evaluate Tony's potentials and locate available jobs.
Next week we will meet with Lillian to interview people from the different agencies in town and choose one of them. Lillian has helped me to think of questions to ask the different agencies. You know-- things like "What can your agency do for Tony? What kind of success rate do you have? How many clients do you have? What's the waiting list? How long does it take to find a job? Why is your agency different than the other ones?" So we're getting ready to have that meeting. I don't quite feel like I know how it will all work out, but Lillian will be there to help.
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