HRSA/MCHB 2005 FEDERAL/STATE PARTNERSHIP MEETING

PUBLIC HEALTH ACROSS THE LIFESPAN

Cross-Cutting Issues in Transition

BRIANNE SCHWANTES: Good morning, everyone. As Patty said, my name is Brianne Schwantes. I'm currently from South Milwaukee, Wisconsin. And when I was born on April 9, 1980, I was born with a rare bone disease called osteogenesis imperfecta. It's easy to remember. It's osteo means bone, genesis, from the beginning, imperfecta, imperfect. So basically I had a brittle bones disease.

And when I was born, the doctors told my parents that I wouldn't live through the night. Today, however, I'm a college graduate, and live in Washington, D.C., and I work for the National Institutes of Health doing public liaison work and patient recruitment. I'm also a national public speaker who has traveled across the country talking to students, medical organizations businesses, youth groups, everything, talking about how kids with special needs and how people in general have the ability to overcome any obstacle that's in their way.

For me, it's important to remember that disabilities not only affect the child in question but also their entire family. I was blessed with some parents who are just absolutely phenomenal people who were very positive from the get‑go and taught me, in turn, to be very positive about my life. They set a ‑‑ they were role models for me, and made me believe that anything that I wanted to accomplish I could.

I was also blessed with a little sister named Elizabeth, who was born two years after me, and who is absolutely normal and has no disease whatsoever. Elizabeth is an interesting case, too, because siblings of children with special needs oftentimes are forgotten. It's that whole saying about the squeaky wheel that always gets the grease. Well, my parents made a conscious effort to always make sure that they included Liz in all the decision making and she played an active role in the family. She wasn't forgotten just because she wasn't a child with special needs, but instead she was appreciated for who she is and became part of our team.

For me, I also learned that youth themselves have to play an active role in their medical care because medical care isn't just the child themselves and their doctors, the medical team is the parents, the teachers, the neighbors, the aunts and uncles. Everyone should play a very active role in dealing with a chronic condition because it affects everyone.

And by making sure that you make everyone understand that questions and ideas should always be encouraged, people are going to feel like they should be more active in the child's life, and therefore the child will feel more included as well. This was something I learned from having 13 cousins and six uncles and aunts, and everybody played an active role, and I think it made me a better person for it.

I also learned in my life that it's important to not only balance your health and your own needs but also your school life and just have fun as a kid. Because a child with special needs and a team with special needs, they aren't their disability. For instance, I may have osteogenesis imperfecta, but that's not who I am. I'm a sorority girl, I'm a college student, I'm a speaker, and I'm not O.I. And I think it's important to make the kids feel like they are not that disease themselves because it's better for their own well‑being.

I've also learned that balancing health issues and having fun and learning is really important, because kids need to make mistakes. My parents let me make mistakes. They let me get detentions in high school. They let me get into trouble, safe trouble. But the only way you can learn is by making mistakes and learning from them

And I think that children with special needs are often protected, which they should be because oftentimes they need extra help, but also, you know, give them the chance to make mistakes, give them a chance to learn from them. It's really important, and it makes for a more well‑rounded person. Because children who have these special circumstances oftentimes feel really out of control in their lives. I know I did. You have doctors telling you what to do, you have your parents telling you what to do, and oftentimes it's really important to give the control back to the kids.

Let them have the power to consent to their own treatments, to consent to their own surgeries. Even if they're not capable enough to, you know, have the motor skills to sign their signature, give them a signature stamp. Let them stamp their approval, because it gives them the control back in their lives which oftentimes is something that's extremely lacking, and it's important for them to have the self‑awareness and the responsibility to have that control over what's happening to their own body.

Because it's important for parents to lead their kids to the best choice but not exactly tell them what to do, because it's the kid who has control over their own body, and it's important for them, you know, to know that they have the right to say whatever they want to do ‑‑ yes, no, I believe this, I don't believe that ‑‑ and give them control back because that's extremely, extremely important.

But also remember that even if a kid has special needs or not, transition periods are normal. My friends right now are going through their quarter‑life crisis. I'm going through my quarter‑life crisis. And just because I have special needs doesn't mean that it's not normal, because everyone goes through it.

And usually children with special needs need to have special circumstances sometimes to make the responsibilities of life go a little bit more smoothly. Special planning starts early. Make sure that the parents and educators, health care professionals help them with things like insurance, with living, accessibility, those kinds of issues. But, also, it's normal. Life is going to and little scary once in a while, but we all go through it.

Because it's important to realize that whatever happens in life, you have goals of what you're going to do. You have goals for whether or not you want to graduate from college. But don't set time limits. For me, myself, it took me five years to graduate from college because I had to withdraw for two semesters due to some badly broken bones. But I did it. I got through college. It to being me a little bit longer, but I did it. And that's just important. It's a goal, it's not the time limit.

I also have a very soft spot in my heart for community service. Oftentimes when I was growing up, I was always the kid who needed help. I was always the one, you know, who required a little bit of special planning. And then one day somebody told me that I could be the one to help others. And I swear, it was an addiction. I was completely wrapped up in community service because it gave me control over myself to go and help other people.

Also it's important because it's team building. I'm not exactly the kind of person that can join a hockey team or play football, although I was telling these ladies that I won the fantasy football league last night, but that's beside the point.

For me, volunteerism was a way to learn team building and interpersonal skills, which are ever so important later in life, and it gives them a sense of community, a sense of self‑esteem which I think is really super important.

In conclusion, there are so many things to realize for the transition period for kids from childhood to adulthood, but mostly it can be summed up in three different areas, I think.

Education. Encourage them to go as far as they possibly can, but include some education with friends and with coworkers, participate in clubs and activities, because those are the way you get the social skills that you really need later in life.

Health and Welfare. Tell your kids they have control over their own bodies and they need to learn as much as possible about their own condition and diagnosis. It's their responsibility, and that's how they're going to learn to stay well longer.

And then adulthood. Transition periods are normal. We all go through it, but just make sure that you do as much planning ahead of time as possible. Medical care, insurance, just how to get around in your community, whether or not you have alternate plans in case there's snow days, that kind of thing. Special planning takes time.

I guess that I'm so happy that I could talk to you guys today and start this dialogue about transition periods. It's not something that I'm going to be able to wrap up in ten minutes because, you know, 25 years I still don't know everything, and I don't think I'll ever know everything. But it's a starting point.

If you have any questions, feel free to visit my website or e‑mail me. I'm more than heavy to help out in whatever way I can. And I guess I'll turn the podium over now to Trish.