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.
Visit Donna's Website
Donna's Book Finding Matthew on Amazon
More information about Pica
Music for today’s episode from Kevin MacLeod
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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
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.
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.
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.
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.
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.
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.
Watch this beautiful short film about TinySuperheroes
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
Today Megan Goates is back to share her how special needs have changed Halloween for her family. Megan's oldest and youngest sons are typically developing, and her middle two sons are on the autism spectrum. Tune in to hear how her expectations for the holiday have changed. A few other parents share their experiences of special needs on Halloween as well! If you'd like to be on a future episode, please record your answer to the question of the month.
Even though Betty has only been in our family for two and half years, I'm already starting to understand that many of our traditions and expectations - especially around holidays - need some tweaking. Halloween is no exception. Many parents have shared the adjustments they've made for their kids with special needs on Halloween. I've collected their thoughts for one mini episode and post about how Halloween is different for special needs kids.
My 2 young daughters have anaphylactic food allergies. We still want them to have the same experiences as their cousins and friends so we still take them trick or treating. When we get home we separate the “safe” candy from the “unsafe” candy. When our 6 YO was younger we had a Switch Witch that would come in the night and leave her a small toy in exchange for the unsafe items. Also the last 2 years we have taken part of the Teal Pumpkin Project. Any house that has a teal pumpkin on their porch is a clear indicator to FA children that the home has safe treats or non-food items available.
Clara has a hard time with certain fabrics, plus the overwhelm and excitement can often stress her out. Last year she ended up wearing the same costume she had worn the previous year because she just couldn't make up her mind and it was causing too much anxiety.
Halloween got changed from the time Eddie was about 3yo and started walking. He would walk into peoples homes. Scream and not let them put candy he did not like in his pail. Also i had to learn to except his differences, i had to explain his needs at almost every house because i felt bad letting people think i had 2 awesome kids and a spoiled one. I also took that opportunity to educate people on Autism.
Halloween hasn't been an issue in our family. Now that my son is 6, he wants to wear face paint!!!! Go figure?
We have had to change how we approach Halloween. We wear normal clothes that can be used as a costume. Last year Max was a train conductor. Overalls and a white shirt. He has so many clothes issues. He also doesn't like anything touching his face. Then we can only be out for an hour tops. Max gets overwhelmed and nervous around new people and environments. We try to show him cartoons about Halloween and get Halloween books from the library. Preparation is key with a child with Autism.
Halloween is sort of a trigger for me, because it's always been my favorite holiday, and while I never envisioned being a mom really, as soon as I found out I was pregnant it was "OMG ALL THE COSTUMES!". Cut to: a kid who hates anything on his face/head, doesn't really like candy (!?!), cannot say "trick or treat", has no concept of holidays, could not care less about dressing up/characters/pretend, and is a RUNNER [meaning we can't trust him outside without holding his hand - which is of course not his preference]. These things sort of un-do what I'd previously built up around Halloween as the fun parts...and that's ok! This year I'm looking forward to living in a neighborhood that gets a lot of trick-or-treaters and having him help me pass out candy. Motherhood really does redefine everything.
Remembering that it's not my holiday and letting them make their own plan is our key to success. They plan where they go, what they wear (if a costume or not) & especially when we go home. Sensory overload happens every year. This year we are going two places and then doing a party with them that night with trick or treat in every room, snacks, & scary movies.
We definitely have original costume ideas: Since my daughter has been old enough to say what she wants to be, there has never been a dull moment. She is six now. When she was three she was "Bad Cat Purple Cat. At 4 she was a chicken, last year she was "an oscillating fan," and this year, we're still deciding, but top contenders include Shredded Wheat, a lemon poppyseed muffin, or a dog bone.
My son wasn't able to go up and down stairs to knock on doors until maybe about the age of 5. So we would dress him up and sit on our front porch and hand out candy together. My son also didn't like masks or face paint. However, at age 9 he now wears costumes but he really doesn't get the full grasp of what Halloween is. We celebrate anyway every year, and even attended the NYC Halloween Parade.
My son is deaf and has had cochlear implants for nearly two years. We've had to interpret for him, "He's signing, 'Candy, please!'" *signing* "Ben, you can pick one piece of candy from the bowl." Things like that. Obviously, this cuts down on the conversations he had with others about what he was dressed as or what kind of candy he likes. His spoken language has really improved since this time last year, so I'm curious to see how things go and if I noticed a huge difference.
Because Brenna has trouble regulating her body temperature, Halloween can be tricky with hot costumes and cold weather! We've had to be much more diligent about those things.
It has changed for us in a pretty big way. We were the family that would go to all the events leading up to halloween and on Halloween we would trick or treat till we couldn't walk anymore. Once my son came along halloween turned into church trunk or treats and very little of the trick or treating due to his stroller/chair not being able to most doors. It's still just as fun just different so he can be included and not felt left out.
Halloween is different than I thought it would be because my son doesn't [yet] enjoy or understand Halloween. His delays and sensory challenges mean he won't wear a costume that has anything on his face or head. I know crowded places with a lot of noise will make him anxious, so we kindly decline big party invites. And I know my son might only last for 1 or 2 houses of trick-or-treating before he's had enough.
Halloween hasn't changed much for us. My girl didn't really "get it" until she was 3, but she liked getting candy and would hold her bucket out. You could see people expecting her to say "trick or treat" or "thank you" but we just said it for her. She can speak better now so we'll see how things go this year. The hardest part on Halloween is all the carrying and lifting. It's too hard to bring a stroller since she'd have to get out at every house. She can walk this year but with the busy sidewalks, we'll likely end up carrying her still.
It changed to where my 19 month old will either be on a hip sling on my side or in a stroller. We also do less houses. She's ready for bed after two hours max so I'm keeping it low key for her.
We make a costume for calvin AND his chair :)
Fifteen months after finding Holden on Holt International's website, Beth Anne and Chris finally got to bring him home. Beth Anne thought that by going into this adoption with eyes wide open, well aware of Holden's disability, that she would bypass the difficult grieving process that can accompany this journey. But she found that she was in for a bit of a surprise. Tune in to hear what challenges and blessings have come with raising her sweet little boy with arthrogryposis.
When Beth Anne spent a summer abroad at 20 years old, she wasn't sure she ever wanted kids. But after falling in love with the children in an orphanage in India where she worked that summer, she knew she wanted to be a mom. And not only that, she felt strongly that she wanted to adopt a child from another country who had special needs. International adoption can be a long, gut-wrenching process. In today's episode, Beth Anne shares the process she and her husband Chris went through to find their sweet son Holden. Tune in for all the great details.
Marica and her husband were expecting their first baby when they got a diagnosis that would change their lives forever. Before they even had a chance to process the news, they were on a plane to Florida for a work conference. They mourned and researched from their hotel room until they finally decided to head to the pool to try to cheer up. The mom and son they met there would change everything again. Tune in to hear their touching story.
Jeannie Ewing is a writer, speaker and grief recovery coach. She's also the mother of two girls with special needs. Felicity is four and Sarah is two. Felicity has SPD, ADD and anxiety. Sarah has Apert syndrome. Jeannie talks about her journey as a mother and how she came to help others who are in a dark place.
Cami talks about her son Calvin who was diagnosed prenatally with spina-bifida. At 25 weeks gestation, a fetal surgery was performed to close Calvin's back. Cami discusses her hopes and fears as a mom, some of the awkward and wonderful conversations she's had with strangers, and the common ground she finds with other parents facing all kinds of challenges with their kids.
Photos and notes can be found at http://www.bringingupbetty.com/6
Kera has three red-headed children, each with their own set of special needs. Julianna has autism, Tourettes, anxiety, sensory processing disorder, stereotypic movement disorder, and OCD. Blake has mastocytosis. Nathan was born with a cleft palate. Each mile of Kera's parenting journey has taught her something she never expected to have to learn. When Julianna decided she wanted to join a softball team, Kera and her husband were nervous, but encouraged their daughter. In the end, they all had an experience they weren't expecting.
Angela and her husband have had two babies with prenatal diagnoses. Their daughter Grace had hypoplastic left heart syndrome and the diagnosis helped them prepare for all necessary interventions including fetal surgery and open heart surgery at 3 days old. Their son William also had a prenatal diagnosis. He has Down Syndrome. Tune in to find out why Angela and her husband opted to keep the news to themselves until William was born. Angela describes William as a magical child with a gift to draw people in.
Annie and Jonathan were told that they wouldn't be able to have children so they moved half way across the world, bought a two-seater convertible and... found out they were pregnant. Lots of other surprises followed, including some special friendships that developed after discovering their son's disabilities.
Have any special relationships developed because of your child's condition? Leave a comment with your story on the blog!
Megan is raising four boys. Two of them have special needs. She talks about the challenges that parents face regardless of the child's diagnosis. She also talks about the sweet relationships that develop among siblings of special needs kids.
Host Sarah Evans tells the story of her daughter Betty and how they arrived at her diagnosis of Potocki-Shaffer Syndrome, an extremely rare genetic disorder.
Bringing Up Betty is a podcast about the struggles and stories of parenting children with special needs. Every other week host Sarah Evans will interview a parent raising a child with special needs about their unique experiences. For more information visit www.bringingupbetty.com