"If you ask him, Mitchell will tell you he's from 'Autism,'" says Krysia Braun, "the same way someone would tell you they are from Ireland. He's right. It really is a different culture, a different place."
Braun and her husband first noticed something was "different" about their second son, now 8, shortly after his first birthday. Braun, a former Chicago Public School reading specialist, couldn't quite put her finger on it. But when her toddler turned 15 months old she started, as she puts it, "taking data" - essentially writing down which of Mitchell's behaviors and idiosyncrasies felt unusual. She shared them with their pediatrician at his 18-month appointment, and they were referred for further testing.
The Brauns, just weeks away from the birth their third son, received Mitchell's official diagnosis when he was 22 months old.
"It was like stepping onto Mars," recalls Braun. "It was a whole new language to speak, so many hoops to jump through. Just navigating all the autism information available was a full-time job in itself."
Braun was looking for guidance on how to tackle an increasingly complicated healthcare system. She was in search of early interventions like the Wisconsin "Birth to 3" program, which provides services such as physical and speech therapy for infants and toddlers with developmental delays. But mostly, the Middleton mom and her husband longed for a support system that included other parents of autistic children.
"You can't imagine how isolating it is," Braun says. "It's hard just to get to the grocery store. You never know when Mitchell may just lie down in the middle of the floor, unwilling to get up. The stares are hard to take. It can even be hard getting together with extended family who have kids the same age. They just can't relate when we complain about something.
"Unlike a broken leg or some other temporary condition, this isn't going away," she continues. "I really wanted other families to talk to, to kick around ideas with. I didn't want to feel so alone."
Never one to shrink from a challenge, Braun founded the Middleton Abilities Group Improving Community - better known by its hopeful acronym, MAGIC. The grassroots organization, started in 2009, now counts nearly 60 families as members, all interested in advocacy and support.
"The Autism Society of Greater Madison does really great work and has a lot of terrific programs," Braun stresses, and she also praises the Waisman Center as "world-class when it comes to research and outreach" with regard to children with developmental disabilities. But Braun was passionate about localizing support opportunities in the Madison area.
"I wanted individuals with a disability or those with a family member with a disability in the Middleton Cross Plains School District to have their own networking group. Something right in their own backyards."
Braun sees the group, which gets together both in person as well online, as "a place to share our experiences and stories, especially with regard to school." But she's quick to point out that MAGIC isn't born of a desire to bash the school district
"I want the group to be a positive place. Not somewhere you come and then leave worried about bullying in schools, but somewhere you'd come to feel empowered about doing something about the bullies."
MAGIC also hopes to address what Braun and others see as a lack of recreational opportunities appropriate for their kids. "In many ways kids with autism are kids to the extreme," she says. "They might be incredibly interested in baseball or Pokémon, but are going to need extra support to be able to play alongside their peers."
Eight members of MAGIC, including Braun, recently met with state Sen. Jon Erpenbach and Middleton city planner Mike Davis to talk about the community's need to expand recreational programs for children of all abilities and to take the initiative to create inclusive classes for kids with disabilities. "Segregating our kids from local recreation makes it harder for typically developing kids in the area to get to know them in a more relaxed environment."
Braun hopes that the group can help spread the word to high school kids in the community that they can make a difference by becoming mentors.
"It would be great if teens could take on starting an inclusive Lego League, where kids with autism can practice taking turns. Or maybe they can help out at T-ball by explaining the rules of the game to kids like my son."
Another immediate MAGIC goal is finding a permanent monthly meeting space that would allow for childcare. The group has been busy presenting these and other volunteer opportunities to local civics organizations, like the Optimists and Kiwanis Club.
It's sometimes time-consuming, but worth it for Braun. "I see this as 'paying it forward,' perhaps karmic. You never know what kind of help you are going to need. I can be here for other parents now, and they can be there for me later."
And if MAGIC is as successful in the Middleton community as Braun hopes it will be, autism - that "different culture, different place" - will be a more accepted one for Mitchell to be from.
For more information on magic, go to magic4ourkids.ning.com.comments powered by Disqus
Seeing Romeo and Juliet this past weekend was a definite reminder that I need to prepare for something that might resemble a (Near) West Side Story around our place pretty soon.
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If you have aspiring authors in your house, this summer offers a fabulous opportunity for them refine their writing skills. For its second summer, the Greater Madison Writing Project, in partnership with Olbrich Botanical Gardens, is sponsoring two week-long camps in August for young writers entering grades 3-8.
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Some clever-clogs is playing Rachmaninoff on the piano at a party, and there it is again, that oft-heard adult lament of lost opportunity from a dejected onlooker: "I wish I could play. I wish my parents hadn't let me quit music lessons. I was just a kid -- how was I to know?" It's a reasonable complaint.
If you're checking out summer camps for your child, there are many issues -- some obvious, some less so -- to keep in mind. Here's a list to keep handy when you contact camps and camp directors, looking for the perfect spot for your kids to have fun, relax, and learn this summer.