Expectations and IEPs (BUB #16)

We're kicking off summer with a special mini episode! Kathy Hooven's 14 year old son Ryan has autism. Last summer he attended a choral camp and at the final concert Kathy had some surprising realizations. Tune in to hear her story.

Donna Kirk's son Matthew was born in 1970. Due to oxygen deprivation during delivery he was born with severe brain damage and doctors advised Donna and her husband Ed to do the unthinkable - put him in an institution, have another baby as soon as possible, and get on with their lives. They called him a vegetable with a heartbeat. In this episode, you'll hear what happened with the Kirks rejected the advice of their doctors and took Matthew home to care for and love him as their son. Spoiler alert: he surprised everyone and had a fabulous life! Matthew was a child with brain damage, a young man with mental illness and a son and brother with extraordinary spirit. I loved gaining additional perspective from a mom who has been parenting her disabled son for so many years. I hope you will too - enjoy! Donna has written a beautiful memoir of Matthew's life and her experience as a his mother. I was surprised to read about so many experiences that felt familiar and relatable. Despite the difference in diagnosis, generation and medical advice given at the time, I saw so many parallels to to my own experiences as a mother. SHOW NOTES Visit Donna's Website Donna's Book Finding Matthew on Amazon More information about Pica Music for today’s episode from Kevin MacLeod Share on Facebook: http://bit.ly/bub20fb Share on Google+: http://bit.ly/bub20gp Share on Twitter: http://bit.ly/bub20tw

Today we're doing something a little different. Betty's been sick and I didn't want to wait yet another week to put a new episode out, so instead I'm sharing a few uncut chunks of my chat with Mary Evelyn Smith that didn't make it into her story in episode #17. I had such a great time chatting with Mary Evelyn and found her so relatable. I think you'll really enjoy this unedited discussion on a few different topics. To sum it up, we chat about: The new (intense) forms of mom guilt that show up when your child's early childhood involves a lot of therapy (or maybe Mary Evelyn and I are just both really good at beating ourselves up?) How to ruin any fun/relaxing/enjoyable activity The terrible selection of children's books about disability and differences How to approach and teach your child about disabilities The connections that our kids (and their siblings) are not making about the world The responsibility we have as parents in shaping how our kids will be viewed and treated If you haven't had a chance, visit Mary Evelyn's blog, where she chronicles her family's beautiful (but real) life. -- Today's episode is sponsored by ezpz. The silicone ezpz Happy Mat has been a game changer for our family! It means Betty can eat at the table with us - without flinging a plate or tipping a bowl. Use the promo code BETTY at checkout to save 20% on your ezpz order today!

Robert Thornton is the founder and CEO of Paper Clouds Apparel, a business he launched to change lives and serve the special needs and disabled communities.   http://www.bringingupbetty.com/18

Mary Evelyn Smith tells the story of becoming a mother to her son Simeon, who has spina bifida, and daughter Franny, who does not have a disability. She explains why constant attention can be exhausting, and how parenting a child with special needs can make you feel like you've got a big secret.

In "Expectations and IEPs," Sarah tells the story of Betty's transition out of Early Intervention and into the public education system. How they made the first round of tough decisions about Betty's future, plus bidding farewell to the first round of Betty's wonderful helpers.   Episode 16 Show Notes

Parents and individuals living with disabilities and special needs share the kindest things people have done to show love and support.

Dawn offers tips and information for parents of kids with feeding struggles, swallowing disorders and general pickiness.

Above and Beyond It's so nice to have supportive people around me who feel like I'm doing something exceptional by being Betty's mom. But I'll let you in on a little secret: I don't feel exceptional. I feel like a regular mom who is doing what I need to for my daughter to have the best chance at a good, happy, fulfilling life. I feel like I'm doing what any other mom would do in my position. And often I feel like I'm not doing enough. Even though I feel like raising Betty is a great privilege for me and my husband, the day-to-day duties of caring for her are as routine to me as slapping together a peanut butter and jelly sandwich for your typical kid is to you. That doesn't mean it's not hard, but it is something that is part of our life because it has to be. A Super Big Mission Today's mini episode features Robyn Rosenberger, a mom who is going far beyond her motherly obligations in an attempt to change the world. And I feel like she's doing a pretty incredible job. Robyn is the founder of TinySuperheroes - a tiny cape company with a super big mission. She sews and sells capes for kids and dogs and for each cape that is sold, one is donated to a child who is overcoming disability or illness. When I spoke with Robyn earlier this year, she had sent more than 6,000 capes to children who are overcoming. Her mission is to empower extraordinary kids who exemplify strength and determination, one cape at a time. To me, that is exceptional. Join the Crusade Hear Robyn's story - why she started making capes and what she's hoping to accomplish, in today's mini episode. If you'd like to participate in Robyn's cape crusade, please consider purchasing a cape for a special child in your life OR sponsor a cape for a child who is overcoming. You can also nominate a child who is overcoming to get on the waiting list for capes! Either way, a cape will be sent to a tiny superhero and I guarantee it will make their day. TinySuperheroes website Follow TinySuperheroes on facebook | instagram | twitter Watch this beautiful short film about TinySuperheroes

Episode #12 Courtney is the mom to Connor and Brenna. Brenna has a rare skin disorder called Harlequin Ichthyosis. Courtney shares her story of Brenna's birth, diagnosis, and the ins and outs of Brenna's condition. We chat about balancing special needs with regular needs, celebrating beauty and how to respectfully approach a stranger who is different. Because of Brenna's condition her skin appears red and dry - kind of like she has a really bad sunburn. She has to stay lathered in Aquaphor to keep her skin moist. Brenna's different appearance attracts a lot of attention. After nearly four years of being Brenna's mom, Courtney has learned some valuable lessons about how to best approach those with differences. If you've ever wondered what to do when your young child loudly comments on someone who is different, this episode is for you! Learn more about Harlequin Ichthyosis Follow Courtney's blog, Blessed By Brenna Follow Courtney on facebook or instagram Music for today’s episode from Bensound | Kevin MacLeod