Today’s Special

Waiver Woes

Alex, being forever autistic, has a Medicaid waiver, which opens the door to funding for a variety of services, from dental insurance to payment for recreation camps and activities. The social services people, however, keep sending us the wrong forms year after year. We dutifully fill them out, his waiver gets axed, and Jill has to go stand in line in an office neither of us ever dreamed she’d see the inside of. Here’s how we intend to attack this problem, and tips for special-needs parents wrangling in their own version of this growing problem.

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Summer again, and time to load up the family car and hit the road for fun times and sunshine-y afternoons. Unless you’ve got an autistic kid like Alex, when the good times can become more work than they’re worth and you start to envy those who can just pack ‘n’ go. Jill and Jeff discuss plans for special-needs summer fun.

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April is Autism Awareness Month, and as Jeff said to Jill, “What the hell do we need this for? I’m always aware of autism!” Then an old friend of Jeff’s sent him an email saying, “I searched in vain for a Happy Autism Awareness Day card to send you.” Jill and Jeff, whose 9-year-old son Alex has PDD-NOS, then wondered what message these cards could carry. Would they be humorous or heartfelt? Caring or callous? They discuss some possibilities and the idea of caring for someone who is going through something you just don’t understand.

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In a perfect world, parents of autistic kids would have every need met. But Jill and Jeff don’t live in a perfect world, and in this cast they talk about what they’d like to see available for services to autistic kids and their families, with ideas — playgrounds, insurance, rec programs, tax breaks — ranging from the fantastic to the commonsense.

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In this very special cast, Alex’s typically-developing little brother Ned, 7, offers his insights into what life is like with Alex, and, perhaps more important, what he thinks that life will be like in the future. 

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As 2007 ends, Jill and Jeff look back at Alex’s accomplishments through the year — overnight camp for a week, eating bananas and drinking milk, among others — and look at what they’d like to see happen for him in 2008.

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Holidays mean special times: dinners, presents, heartwarming moments with family and friends that can in turn can mean sheer exhaustion when Alex gets rambunctious. Jill and Jeff share some of their experiences from past years, strategies for this year, and gift ideas for their autistic son. (Sneak away and listen in if you get sick of your family over Thanksgiving weekend.) This podcast is now available in our archives.

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Scads of movies and TV shows have featured developmentally challenged characters, from “Rain Man” to “Something About Mary” to “The Office.” As parents in the trenches of special-needs, Jill and Jeff offer their insights into some of these portrayals, and recommend what movies to catch, and avoid.

Some movies we mention (but don’t have time to discuss): “Bill,” “Pumpkin,” “I Am Sam,” and “Riding the Bus With My Sister.” Pascal Duquenne is a Belgian (not French) actor with Down Syndrome with roles in “Toto the Hero” and “The Eighth Day.”

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Jill and Jeff would love to see Alex start to mainstream with typically developing students. They discuss the pluses and minuses, the worries and hopes of putting him in an unfamiliar situation for a few minutes a day. Will the new teacher accept him? Will the other students? Will it help him learn some social behaviors?

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For most people, back to school is a bright fall day filled with the excitement of learning new things. For Jill and Jeff, it’s a time of  burning-eyed exhaustion as they readjust their schedules to meet Alex’s bus at (sob!) 7 in  the morning. Through their yawns, they also discuss their goals for Alex in this new school year.

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