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| Diagnosis turns mother into autism activist |
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 Jim Brodhagen is still amazed by how his wife, Kelly, changed when their first son, Jimmy, was diagnosed with autism 18 years ago.“She jumped right in,” he said. “When I first met her she was extremely shy. Now she’s a public speaker. She’s right there, I say fighting for our kids, but it’s for all children. Wow!” “Jimmy is 20 and he was diagnosed pretty early, considering most kids at that time didn’t get a diagnosis early,” Kelly said. “He was diagnosed at 2½. Back then, it was not the norm to get a diagnosis that early, but he was displaying some of the classic symptoms of autism.” Jimmy’s parents had the added stress of building the home they live in now in the Town of Menasha about the time he was diagnosed. Becky was already pretty certain that Jimmy was autistic when they decided to bring him to the Waisman Center at the University of Wisconsin in Madison, a leading research, training and service center for human development, developmental disabilities and neurodegenerative diseases. “I thought for sure before the diagnosis, he’s got this,” Kelly said. “I read Children With Autism: The Parents’ Guide. I looked at every symptom. It was the only book out there at the time that meant anything.” But her husband was not convinced. “He said, ‘I don’t want to hear it until it comes from a doctor’,” Kelly said. “I finally convinced him to go to Madison. We heard it not only from one doctor but from a team of doctors. And on the way home, I remember him crying. He was crying and I was at a different place. I remember him saying, ‘He’s going to be OK. He’s going to be all right.’ And I said, ‘Yes, he will.’ But he had to hear it from someone else. That really started us on the road to getting help.” Like many parents of autistic children, Kelly became an autism advocate to help Jimmy, but the explosive growth in autism diagnoses were just beginning in the early 1990s when he was diagnosed; it was still the dark ages for the availability of autism information for concerned parents. “There was no internet and there were five books, and maybe two of them were worth reading. That’s what we had at the time.” Kelly said, adding that the lack of information is what drove her to autism support groups. “I went very quickly from learning about autism to becoming an advocate. I was sort of ripe for the picking. ‘Hey, we have a new mommy here. Let’s get her on the board.’,” Kelly said. “I wanted to be around these people who know about autism because at the time there was nothing out there. I wanted to surround myself with all these knowledgeable people and get as much information as we could.” Today she serves as administrative coordinator of the Autism Society of Wisconsin, a group she said helped her family in the beginning. “It’s a grassroots organization of connected parents,” she said. “We were fortunate to get involved and meet other families so you didn’t feel so alone. Some of those people helped us get going. This is what was done. The Autism Society and it’s local chapters are there as a constant support to local families. That’s the one thing about our group that I’m most proud of. We’re the only sustaining organization that’s there to help parents throughout the years.” Kelly admits she made mistakes as a newbie advocate. “When I was younger I didn’t understand the special education laws, I didn’t understand a lot of the terms or my role in the advocacy process,” she said. “I’ve learned a lot of hard lessons. I participated in meetings that made everybody feel uncomfortable. You don’t go right to the school board. There are certain levels of bureaucracy. You start with the teacher, then on to the principal.” An advocacy boot camp for parents of children with disabilities put her on the right path. “After taking that, I understood how to effectively advocate for your child,” she said. “You understood the laws and the intent behind the laws, but also you practiced negotiating skills and how to become an effective advocate for the children.” While Kelly felt comfortable attending support group meetings and learning from other parents, Jim Brodhagen did not. “We handled it differently,” he said. “She used the support groups. I went to one meeting and I couldn’t stand listening to everybody else talk about, ‘Well, this is going to happen and this is going to happen.’ I always thought, not necessarily. They said, ‘He’s not going to ride a bike. They can’t do that.’ And ‘Well, when they turn 18, they might have to be in a group home.’ No, he doesn’t have to be.” Jimmy wanted to ride a bicycle, so his parents sat him on a bike and held his feet on the pedals. “All of a sudden he’s riding the bike,” Jim said. As an autism advocate, Kelly now understands Jim’s reaction to support groups. “He was in denial,” she said. “I didn’t feel like I could talk to him because I was at a level of acceptance he wasn’t at yet. So I did feel very alone. That’s not atypical. But between the both of us, we have come together to really help our kids as much as we can. As far as that goes, we’ve handled it differently, but a lot of marriages don’t last. We’re in the minority. Families find it very difficult to handle a child with autism, let alone two children.” Tony, the Broadhagen’s second son, came seven years after Jimmy. “After talking with developmental pediatricians and my obstetrician, the rates were very low and the chance of it happening in our family again, the odds were incredibly low. We wanted another child in the worst way,” Kelly said. Between 18 months and 2 years of age, Tony’s parents started noticing things about his development that concerned them. “But we didn’t worry about them because he seemed so much more engaged than Jimmy was at that time. He was such a happy kid. I guess we didn’t want to go down that road again, so we sat in denial for a little while,” Kelly said. Tony was 2 when his parents decided to take him to the Waisman Center. “I was reluctant to hear the diagnosis again,” Kelly said. “It was the same developmental pediatrician who diagnosed Jimmy. He said, ‘We can wait.’ And that’s what I wanted to do. We just kind of waited. We got in touch with our birth to 3 programming and Tony started receiving some services. We want back (to the Waisman Center) a year later and he was diagnosed. We were better equipped emotionally to handle it. “Tony is also on the spectrum, but he will tell you he only has it this much,” she says, with forefinger and thumb an inch apart, “but he’s got it really bad.” Kelly said Jimmy and Tony are perfect examples of the spectrum of autism disorders. “Kids are so different,” she said. “When you look at the autism spectrum, you see our older son, who has many of the features and characteristics of autism. Then you look at Tony, he’s very social. He’s very independent. He doesn’t need the assistance that our older son needs. He’s a pretty independent young 13-year-old, but he has really struggled socially – social understanding, social rules that most other people get but he doesn’t. Social appropriateness, for example, things you think in your head, he says. He amazes me. Socially is he is a very fun person. He’s very interested in other people and what they’re doing, where my older son, it’s all about him and his own interests. They’re both delightful and both very different.” More and better services were available to Tony than were not in place for his older brother. “That’s all changed,” Kelly said. “The world has changed. There are social networking sites. You can just hop on the internet and do a search for autism and find other families, other parents. There are camps, so to speak – who does this type of therapy, that type of therapy. It’s easy to get in touch with families now. There’s so much research being done. The kids are being educated differently – appropriate education and programs. It took a while to get there and they’re still learning, but things are much better since Jimmy started.” At the time the Brodhagens were coming to terms with Tony’s diagnosis, their third son, Sam, was born. “We were scared to death. Was this going to happen a third time?” Kelly said. “We were really watching Sam like a hawk. He had a speech delay, but his language came along and he had some intervention services. Now he’s in a typical 5th grade classroom, just a regular, nice kid.” She said Sam, an 11-year-old student at Butte Des Morts Elementary School in Menasha, often negotiates peace when his older brothers are fighting. “Sometimes he tries to act like a parent, which makes Tony mad. If Jimmy’s upset about something, he’ll try and talk to him about it and calm him down. If he can see Tony’s bothered by something, he’ll try and help. He’s really a great kid. That’s just his personality, too.” Tony, 13, attends 7th grade at Maplewood School in Menasha, where he plays trumpet in the school band. Jimmy, 20, works at data entry at the Appleton plumbing supply company Ferguson Enterprises. “The employers are phenomenal,” Kelly said. “They went from tolerating him to really embracing him. He does data entry with zero errors. They’ve been phenomenal. They have really embraced him as one of their employees and they invite him to all their company functions. He’s considered part of their team. It’s really been nice.” Jimmy also had an opportunity to work at his dream job. “He’s worked at Lamers, cleaning out buses. Buses are his passion,” Kelly said. “As far as a lifelong job, I don’t know if there is a need for it. Most bus drivers clean their own buses. But they gave him chance. He swept out the buses and cleaned the windows. The happiest place he ever was. That fascination has always been there. When he was 3 and going on to school, we couldn’t even say the word school bus because it would just send him off. He’d go on and on and be very excited. So we called it the yellow vehicle that takes kids to school. We couldn’t even say the word.” Kelly said there are times when it comes home that your child will never know some of the milestones that other children know. “There are times when you come to a level of acceptance of having a child with disabilities. You cry and you deal with it,” she said. “Perhaps other kids are learning to drive, it can come back to you. He’s not going to drive,” she said. “But you try to be happy and celebrate all your child has accomplished and their attempts at accomplishment.” With so much information and possible misinformation available to parents, Kelly said she understands how camps have formed around different theories and treatment. “Parents are so desperate that they’re willing to try anything,” she said. “If somebody would have told us 17, 18 years ago, ‘If you give me $500,000 I could cure your kid with this treatment,’ we would have sold the house and car and lived in a cardboard box if we thought it was going to help. So I worry about families staying in these camps and believing this is the only thing that’s really going to help them.” She suggests parents with autism questions and issues connect with the Wisconsin Autism Society and its local branches. “They do a lot of different activities,” she said. “They give support. The Autism Society and its local chapters are there as a constant support to families. That’s the one thing about our group that I’m most proud of. We’re the only sustaining organization that’s there to help parents throughout the years. We may be in a good place right now, but that’s not to say a family in the neighboring district isn’t having a hard time or aren’t receiving the services they need. So we’re here to fight the good fight for all kids.” She adds that it’s also important to have a family support system. “We have a good marriage and we have the support of our families. Some families don’t have that. That can be an issue. Some of my very, closest dearest friends are parents of kids with autism. I never would have met these wonderful people had I not been in this circumstance. It’s not all sunshine and posies. It’s not the end of the world, either.” |
