Tuesday, November 19, 2013

One of the toughest parts of special needs parenting (and the most rewarding)


This is four-year-old Izabella Uccello, a Missouri girl who's into all things princess. Her mom, Becki, recently entered her in The Miss Springfield Pageant. Izabella has spina bifida and uses a stander. "I wanted her to have her own thing, aside from physical therapy and speech therapy, just something fun for her to do," Becki told a reporter. Izzi had her clothes and pompom routine all set.

A few days before the November 2 pageant, Becki reached out to officials to ask about accommodations. "I figured in case they did need to modify, they'd have time to do so," Becki says. "But I sure wasn't prepared for it to be inaccessible."

Becki and Izzi

Becki had thought she could leave Izzi's stander on the stage, then carry her up a few steps to it. She learned that the auditorium at Hammons Heart Institute, an affiliation of Mercy Hospital where the ceremony would be held, had a series of 15 steps leading down to the stage—and that the girls would start the pageant by proceeding down them. "There were no ramps at all," says Becki, "and no way to come from backstage."

The steps in the auditorium

It was too late to modify the auditorium or switch venues, and things weren't going to work out. "It was heartbreaking for us," said hospital spokesperson Sonya Kullmann. It was more so for Izzi: "Izzi said over and over, 'Mama, I wanna be a princess,'" says Becki. "I told her and continue to tell her that she IS a princess." Pageant directors suggested another pageant that's taking place in February, Miss Branson, that has no steps involved; Izzi will be attending.

The auditorium in question was built in 1985, five years before the passage of the Americans With Disabilities Act (ADA), a civil rights law that prohibits discrimination based on ability in employment, public entities (including school districts), public accommodations and telecommunications. "A hospital is a public place so it falls under Title 3 of the ADA," explains Katy Neas, Senior Vice President of Relations for Easter Seals. Too often, officials in charge of public spaces that were constructed pre-ADA may claim they've never been asked to make them accessible (although the ADA also covers pre-existing buildings). "Unfortunately, and too often, unless people raise a fuss action isn't taken," continues Neas. "Even then, sometimes if people don't threaten to sue, nothing changes."

This may not come as news to those of us who've encountered inaccessible spaces, not to mention inaccessible mind-sets. Perhaps the toughest part of parenting a child with special needs is continuously finding ways to bypass or knock down roadblocks set up by society even as we're steering our kids' development and tending to their needs. And there are many, many roadblocks.

I recently had a conversation with a camp director about the possibility of Max attending the camp for a few weeks next summer, and being in a "typical" bunk with the help of an aide. I was gently told that Max would be best off in the dedicated program for kids with special needs, which is when I explained that Max attends a special-needs school year-round—and that I really wanted him to have an inclusionary experience. He said he'd look into possibilities. I never heard back, so I'll be calling again.

It gets tiring. Why does it have to be so hard? you wonder. Am I asking for anything outrageous? No. Don't I have enough on my hands? Yes. Where is my damn fairy godmother? But then you look at your child and you ache for him or her to enjoy the same events and everyday activities other kids do and have total access to life's pleasures and experiences. And you toss back another cup of coffee and sigh a big sigh and you keep going.

Becki's succeeded in getting all sorts of accommodations for Izzi and her stander. At school, they've changed the layout of Izzi's classroom. "The director of Sunday school at our church has had the maintenance department raise the tables so that Izzi can wheel right by under them," she says. "Even the children's librarians at our local library have ensured that things are accessible for Izzi. So this event of Izzi not being able to participate in her stander is foreign to us."

After writing a letter, Becki has been assured that the auditorium will be modified and that going forward, the pageant paperwork will include a question about needed accommodations. She says that a rep from Mercy Hospital called and asked for suggestions in making sure the facility is ADA compliant; supposedly, the hospital had plans to remodel within the next few years, but is going to speed that up. 

Whether or not you're into pageants, the issue at stake is a larger one. "I am calling for parents of physically challenged children to not be hesitant in insisting that their children have the opportunity to participate in events such as this," Becki wrote in an opinion letter to a local paper that ran this weekend.

This is what we do as parents of kids with special needs: We make the calls, we write the letters, we raise our voices, we push and push some more. Says Becki, "As a parent, I've learned that I truly am my kid's biggest advocate."

More power to you, Becki. More power to us all for paving the way for our kids, and the ones who will follow in their footsteps.

Image of stairs: YouTube/KY3 video

32 comments:

  1. I understand your desire for Max to be involved in something "inclusionary." But I wonder, would Max be HAPPIER not having to experience the differences between him and others? Not having to work so hard just to keep up? This is coming from someone who was born deaf and who is "mainstreamed" in EVERYTHING. It gets exhausting working twice (maybe even more than that?) as hard JUST to keep on par with everyone else. I secretly adore the times when I'm with other people who sign and where I DON'T have to lipread and/or work HARDER. It's more comfortable. Also, Max probably doesn't think, "Oh I'm with a group of kids that are ALL special needs."

    Just an idea-- look for camps where they have a special needs component but with "peer models" who attend too. Meadowood Springs Speech Camp in Oregon (they have people come from all over the country) is one of them.

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    1. I hear you, point taken. But it's hard to know if Max would be happier sticking with special needs experiences if we never try. I think it's worth a try. I am looking into all sorts of camps, one with peer models could be great, too.

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    2. I can relate I enjoy not being the only person in a wheelchair so I can have someone understand me & talk openly about it. I also like knowing the ramp wasn't made for one person. In my town I'm the only one in a chair so if I don't need an accommodation it doesn't get done. Sometimes it gets done but they call it tuesona's ramp. Or not at all since I'm the only one that will use it

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  2. I am so grateful for other families who have gone before us to pave the way to be included and provide accommodations. In my daughter's early years, I fought HARD to get her included in "typical" activities as well. I even went to the state to file a complaint when a preschool wouldn't accept her. I've learned over the years (Brielle is now 17yo) that we are all more comfortable in activities designed for special needs kids. It's still worth questioning and fighting for, but at some point, I needed to let certain things go. I felt better knowing the activities' coordinators would prepared for her and she still got to participate. She been in baseball, bowling, soccer, dance, cheerleading, and even pageants. There's a balance. Each family has to find that.

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    1. Also grateful to families who have come before us. And you're so right, you need to know what's worth pushing for. Brielle has had amazing experiences!

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  3. I think this was a little oversimplified. First, it's far from clear that a Hospital must make accommodations to a theater in the hospital under the ADA. Theaters are not usually part of the good or services provided to the public by a hospital which is generally the standard for determining what part of a public facility needs to be ADA compliant. There would need to be more information to determine whether the hospital was violating the ADA including the cost of the retrofit to a preexisting theater.

    As for Max, I hope you can find a camp that can allow for inclusion as that would be a great experience for him. As to why its so hard. Well unfortunately it is. A camp would have to think about a lot of things. Where would the aide sleep? Would the aide need to be there when the kids are given alone time in the cabin? How would that effect the other campers. Do they need to and if so how can they best help Max traverse the often hilly/rocky areas of a camp? Does Max have food related needs that can be accommodated?

    I think you were smart to start the process early. It is hard and hopefully this camp or some other will work with you to achieve accommodation for Max.

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    1. Hammons Heart Institute is a building that is used by Mercy Hospital. Their auditorium is frequently used as a classroom. Therefore, it is required to follow ADA's rules. These are not suggestions. And even if they were suggestions, shouldn't a hospital, of ALL places, be ADA compliant? I find it incredibly odd that the first location where my daughter has very limited access is on a hospital's campus.

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    2. There are camp related considerations but it doesn't have to be that hard. I know because I worked in a similar situation. With a little
      creativity and flexibility it can be done. People just have to be willing.

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  4. Sometimes you'd think its 1913 not 2013 - check this out (and don't be put off by the word 'cripple. - its how some adults with disabilities refer to themselves) http://badcripple.blogspot.com/2013/11/an-unexpected-humiliation-at-conference.html

    The biggest obstacle to people with disabilities is other PEOPLE

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    1. What happened to you that day is jaw-dropping in and of itself, let ALONE at a conference that covered disability. Beyond disrespectful. I hope people wrote to Hobart and William Smith, and I hope the paper covers it.

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  5. I appreciate where Becki is coming from on this. The idea that a hospital was not fully accessible is a bit ridiculous. And as to the comments suggesting that a special needs camp might be more appropriate (at least that's what I got from them), you're missing a huge aspect of inclusion. It is supremely beneficial for children without medical/special needs to have an opportunity to develop relationships/friendships with their peers that do have special needs.

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    1. Yes, that's exactly why I'm looking into them.

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  6. Melyssa went to Camp Sealth for a week the summer before last. (This past summer timing was off.) http://campsealth.org/specialneeds.html Try a Campfire USA camp near you, they were INCREDIBLE!

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    1. Thank you so much, there is a Campfire USA in our state and I will add to my list of camps to investigate!

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  7. Thanks for this. I'd like to note for your parent readers that children with disabilities become adults with disabilities, and adults with disabilities encounter these kinds of barriers as well. Izabella is a bit young for it at the moment, but a silver lining to this experience and others like it is that as she grows, she will gradually learn from her Mom how to advocate for herself, on accessibility or whatever else she needs.

    A couple other points:

    Does the hospital receive Federal funds? Most do. Federal funding means that the hospital should have complied with Section 504 of the Rehabilitation Act, which requires "program access", and did so long before the ADA was passed. This wouldn't have specifically required an accessible stage in an auditorium, but at least some attention to access should have been paid the the auditorium as a significant program component of the hospital.

    I was dumfounded to read that the hospital contacted Becki to get information on ADA compliance. I'm sure Becki directed them to the information, but typing ADA into Google would have led a 12 year old, after a few clicks perhaps, to the entire ADA Accessibility Guidelines. It's no wonder accessibility problems persist when professionals of all types and levels are so seemingly helpless when faced with even thinking about accessibility, which really isn't rocket science.

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    1. Seems like they just contacted Becki out of respect—they already had plans in the works to modify the auditorium. I do hope that Izabella and Max grow up to advocate for themselves and learn from us. Until then, warrior mamas to the rescue!

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    2. I was surprised when the hospital rep called me. He asked me what suggestions I had to make it accessible and compliant, and I responded that I'm not an architect, I'm a ticked off mama. :)

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    3. Ellen makes a good point, that maybe they contacted Becki to include her in the process. However, it also highlights a crucial distinction that many people just don't get ... the difference between accessibility and accommodation. Accessibility is a set of standards designed to include as many people as possible without knowing peoples' specific needs. Accommodation is for individuals, and requires asking the individual what they need.

      Also, it strains credibility that a hospital doesn't have access to an architect or other professional builder. It's not that they don't know how, it's that one way or another, over years and decades, they DECIDED it wasn't a priority ... that's the bottom line.

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  8. I can relate. I'm the only one in my city in a wheelchair. If it wasn't for me nothing would be accessible. I advocate for it. People will still say it's just for Tuesona & refuse to sometimes. I can't go visit nor have local friends. I love being with people who get it. My best friends don't live near me & have disabilities.

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    1. Keep up the good fight. Surely, someday, there will be more people in your city with wheelchairs, and they will owe the accessibility to your efforts.

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  9. The thing about accessibility is that there's a "meets the requirements" way of doing things and a "disability friendly" way of doing things. When Sarah Kate was three (8 years ago in early 2006), we visited my sister and BIL in Atlanta. They didn't have kids yet and were excited about taking her to the brand new Georgia Aquarium. She had just had SDR surgery a couple of months earlier, so she had shed her walker but wasn't walking independently anywhere other than the therapy gym, so we opted to use her stroller like a wheelchair. I won't describe all of the different ways that the Georgia Aquarium disappointed me, but let's just say that in all our return trips to Atlanta, we've never gone back. Yes, they met the ADA requirements, but in ridiculous ways - some of which would have made it very difficult for Sarah Kate to navigate the attraction if she had been too big for my BIL to carry her (which he ended up doing most of the time).

    That visit stood in stark contrast to the experience we'd had at Walt Disney World just three months earlier. Like most people with preschoolers, we spent a lot of time in the Magic Kingdom, which of course is the oldest of the four theme parks. A lot of the accessible entrances/exits for wheelchairs were odd, but none of them were inconvenient, despite the fact that the park was constructed over three decades earlier, before ADA was ever conceived, much less passed. In addition, the cast members welcomed us and assisted us at every turn; not so at the Georgia Aquarium.

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    1. How outrageous that a place that's child-centric was so inaccessible. Did you let them know?

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    2. The ADA compliance issue has been challenging for me, because I want places to WANT to be compliant because they are good, kind, caring people, not because it's the law. Attitude is everything, and when places "have" to change, versus "we want everyone to come to us, regardless of challenges", I think that attitude trickles down.

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    3. As a disabled adult, I appreciate the "attitude is everything" point of view, but I don't share it. I've had physical disabilities all of my 46 years and I'm pretty much over wishing for people to do the right thing out of kindness or morality. The great thing about accessibility is that following those standards can do so much good without having to depend on goodwill or understanding. I like goodwill and understanding, but I'm not willing to depend on them.

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  10. I read this and was very happy that you guys are taking the steps to include them in special activities. I see many special needs parents holding their children back or doing everything for their children vs giving them the ability to thrive. Also, as a pageant director I have made sure I have ramps, stairs, and even lifts.

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    1. GO YOU!!! You've long been an amazing advocate, for Jude and other kids.

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    2. Iz and I want to enter your pageants. :)

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    3. No, I didn't. I took the cowardly route and just complained to everyone I knew. I wasn't quite as firm of an advocate back in those days as I am now. :)

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  11. A non-ADA compliant HOSPITAL?! That's appalling. A lot of wheelchair use is in hospitals.

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    1. But not independent wheelchair use. In hospitals, people in wheelchairs are generally moved around by others. An independent disabled person is a bit of an anomaly in a hospital. I think that's one reason why so many hospitals don't meet access standards.

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  12. There should be a Disney princess in a wheelchair or with Down syndrome

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    1. Great idea! Sell your idea to Disney.

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Thanks for sharing!