News from the NODCC

Finding Our Way to Friendship – How Siblings Lindsey and Nathan Barge Found Camaraderie as Successful Adults

By Miriam Bernard

When we spoke this month with Lindsey Barge about her brother, Nathan, in our yearly sibling feature, Lindsey was honest enough to share that the road to sibling friendship and mutual respect hasn’t always been easy. Sometimes it takes years to develop trust and leave childhood difficulties behind, but when it occurs, it is so worth it. Nate was diagnosed with complete ACC from a very young age, so when Lindsey was born three years later, their household was one with all the complexities and adventures of learning about a child with a neurodivergence such as ACC. Lindsey recalls that due to her brother’s needs, she often functioned as the independent child, who could complete homework without assistance, or look after herself if her parents needed to assist her brother. As many siblings of DCC families may attest, this required Lindsey to develop a maturity and independence uncommon in young children.

There was also the issue of shared attention. Like all young kids, Lindsey coveted her parents’ attention. For parents of a special needs child, doing so in a way that was equal could be difficult to parce it out, when one child required more energy and focus than the other. Lindsey took up the art of dance as an outlet of performance and perhaps an avenue to receive accolades for her own skill and artistry. Sometimes outside hobbies such as this serve as healthy channels to help siblings of DCC individuals feel their own identity separate from their sibling. Lindsey recalls a long discussion in her childhood she once had with her parents, where she was honest about her needs as a younger sibling. In fact, if she could give any advice to families navigating DCC, in addition to navigating parenting neurotypical children, she states, “Try to continue to be open about your feelings to your parents. That’s something I tried never to hide".

Lindsey is now a nurse living in Oklahoma City, and her brother lives in Madison, Wisconsin where they grew up. The sense of competition that existed when they were children and adolescents has faded to the background and now they share a friendship unlike ever before. Lindsey shared, “Our relationship has gotten so much better over the last couple years. He trusts my judgment as a professional, and confides in me- we have a better relationship now. He’ll even ask me for advice with health related questions, since I am a registered nurse.” Lindsey also spent time proudly sharing about her brother’s academic achievements. Despite doctors telling their parents Nate would likely never talk, he is now a college graduate of Edgewood College in Madison, Wisconsin, where Lindsey also attended. Nate was part of a special program called The Cutting Edge, which caters to special needs individuals and places them on a certificate-seeking path, or a degree-seeking path. Nate chose and completed the degree-seeking path, earning his Bachelor’s Degree in Communications with an emphasis in digital marketing, and now he could be the first person in The Cutting Edge program to achieve his masters degree. Lindsey is immensely proud of her brother’s accomplishments. "When he graduated, he walked straight to me and gave me a hug. He may deny it, but he shed tears. It was a very emotional moment for us all. This was a life milestone in which he surpassed any expectation ever set of him".

When asked what wonderful things Nate has brought to her life, Lindsey shared, “My patience and love definitely stemmed at an early age from needing to be patient with my brother.” These are virtues that have not only taken her far in life, but also in her career as a nurse. She also met her best friend as a result of the NODCC conferences. They both have siblings with DCCs and met in the siblings group. The very reason Lindsey is now a resident of Oklahoma City was to be near to her best friend. She encourages every family member of an individual with DCC to attend and dive into the NODCC conference, because there is so much there for the families. You never know, you might meet your future best friend there just like Lindsey.

The NODCC would like to thank Lindsey for her willingness to share about her brother, and also her honesty in opening up about the real-life challenges they’ve overcome. We hope their relationship served as an encouragement to others in a similar boat, who may be looking for hope regarding how things could be down the road. To learn more about the NODCC’s upcoming conference, click HERE.

Family Pets and DCC – Four Ways Pet Ownership Can Improve the Life of Your DCC Loved One

By Miriam Bernard

Whether they bark, purr, squeak or blow bubbles, our friends from the animal kingdom are part of our families. You may be interested to know, however, that research shows pets and service animals can be catalysts in bringing about positive change in neurodivergent family members. Read on to hear from some NODCC community members whose lives have been positively impacted by pet ownership, and four ways having a special animal in your household can bring joy and calm to your DCC family member's life!

1. Companionship/Friendship – Pets provide unspoken companionship and friendship to individuals who may have difficulty expressing their emotions with others. Often, the bond between human and animal transcends other human to human interaction, but provides a similar amount of calm and joy for the pet owner. An article from the ABA Centers for America states, “For many [with developmental disabilities], pets provide a unique social bond that is not available by any other means. Research suggests that having a pet promotes prosocial behaviors. Pets help to foster shared interactions like conversations and smiles. The arrival of a pet into any person’s life can be transformative.”

2. Social Skills - According to ausome.com's article "The Bond Between Neurodiversity and Pets", "Improvements in social skills can be achieved with the help of therapists, like occupational and behavioral therapists. Research, however, has found that learning social skills can also begin with the help of a different species altogether. Pets may provide a variety of benefits ... by offering company. " Individuals with DCC may absorb the positive energy of their pets and move toward learning and participating in social skills. Persons who engage with animals tend to acquire stronger social skills as a result of the affection shown by pets. This enables neurodivergent individuals to feel at ease in a variety of contexts and recognize appropriate behavior.

3. Emotional Assistance - Neads.org, a website for connecting families of neurodivergent individuals with service dogs, explains how service animals provide more than physical help. They can help with behavioral skills as well, such as regulating emotions, easing transitions, and mitigating fears. Their website states, "Transitions are often difficult to navigate for children with autism and other developmental disabilities. A Service Dog can serve as a focal point, for example, when the child first returns home from school or is anticipating a doctor’s visit. NEADS Service Dogs accompany their partner to doctor's appointments, restaurants, sporting events, and other public places and help the child deal with these transitions. For some children, exercising their dog becomes a transitional tool that allows them to more easily move to the next activity. Lastly, tasks can be used to help a child with his or her fears. For example, the task of turning on a light switch can be used if child has a fear of the dark."

4. Independence and Personal Responsibility - For both children and adults with a DCC, the step toward acquiring a pet can be paramount in gaining independence, and especially so for adults. Gray Atherton of Edge Hills University worked on a study of adults, many of whom had developmental disabilities. Atherton stated, “For many, getting a pet was a huge breakthrough, helping them break out of unhealthy routines which could be quite liberating. I think the main takeaway is that despite worries that they can’t look after animals, people diagnosed with [developmental disabilities] are often capable of looking after animals and can see huge benefits from doing so.” Neads.org also shares that "The Service Dog is a teaching tool. Assigning daily chores such as feeding, brushing and cleaning up after the dog can teach a child responsibility and routine. Assisting with this care can translate into an awareness of and interest in his or her own self-care. [Therapy animals can also] reduce resistance to going to the doctor and other appointments. Parents can use taking the dog to the vet as a model for the child’s visit to a doctor, therapist, dentist or other professional."

Here are some pet ownership experiences from our fellow NODCC members:

Scott Family - Jason, Rachel, Allie, and Emily: We have a dog named Gemma. She is a Border Collie/Terrier mix. She was found with a litter of puppies after a hurricane and she came to us from a wonderful rescue organization. Gemma is a wonderful part of our family. She loves people and other dogs (sorry, not cats though). She makes us laugh, loves to play and walk, and is very in-tune with the up and down emotions of the members of our family. She is almost like a four-legged therapist. When asked what advice they’d give, Jason shares, “Pets require a commitment, so make sure you are ready. Do research on different pets/breeds and find a reputable breeder or rescue organization that with work with your family in finding a good fit.”

Madison Jacobs: Blue is our dog. Lee loves Blue so much and Blue loves Lee! It was the first animal Lee recognized as well as the first animal sound Lee made. I’m so happy Lee has a friend in Blue! I think pet ownership is such a good idea no matter the animal. Even a pet as small as a fish would be beneficial for someone with DCC!

Dirk Ykema: We have two cats, named Faith and Larry, and a dog named Samantha. The cats are both odd but very loving, and the dog is well-behaved, silly, and encourages exercise. Pets can be a big responsibility, but the payoff can be even greater. If you consider getting a pet, you definitely want to find a pet, no matter what kind it is, with a gentle temperament.

Kevin & Michelle Smith: We have an 18lb, orange tabby named Fergus. He was the only cat at the shelter that didn’t run away from Nate. He actually walked right up to him and let Nate take his tail and rub it against his face. He is a best bud and tolerates our son’s “extra” love in terms of squeezes and some rough pets at times. Fergus is a hefty guy so can take the “extra” love. [Pet ownership] is a good way to teach your child to care for another by feeding (learning portion control), brushing (works out the hands and wrists) and giving treats (getting the Ziplock bag open and closed) Someday, sadly, Fergus will die and teach the ultimate life lesson of losing someone you love. Grieving is hard and we all must learn the skills needed to recover and love again.

Additional Resources/Research Referenced in this Article:

If you are a regular reader of the NODCC newsletter, you may have caught one of our articles this year called "Celebrating 20 Years of the NODCC - 2003-2023". Our fifth and final installment of this series will take place in November and it will feature: YOU! That's right, we'll share the experiences of our own community over these 20 years, and we'd love if YOU would participate. Click the link for a short, 5-minute questionnaire and to be featured in our final 20th Anniversary Celebration piece!

Click Here

Olam's Piggybank

apply today!

There is still time to apply for the winter cycle of Olam’s Piggybank grants! Thanks to a generous grant from The Swan Foundation, the NODCC provides twice-yearly grants to families and individuals that need assistive devices and technologies.

Grant applicants must be impacted by a disorder of the corpus callosum. Review eligibility and apply before October 31 by clicking the button below.

Eligible Items:

The term “assistive devices and technologies” is to be interpreted liberally. These devices include devices and technologies that improve the quality of life for those impacted by callosal disorders. Such items can include, but are not limited to:

-assistive software and applications

-feeding aids

-mobility aids

-audio or visual aids

-educational-technology aids

Non-Eligible Items:

-services

-therapy

-mobile phones and tablets (such as iPads) unless the supplier locks it into a single application.

-service animals or accessories

Apply Here

2023 Fall Fundraiser

Help us reach our goal!

There is still time to take part in our 2023 Fall Fundraiser!

Here's how you can participate from October 9th to November 13th:

1. Create a Facebook Fundraiser for NODCC: Go to "Fundraisers" on your personal Facebook page, click "Select Nonprofit," and search for "National Organization for Disorders of the Corpus Callosum." Share it with your network!

2. Join Our Team and Create a Personal Page on Mighty Cause: Be part of our 2023 Fall Fundraiser Team by creating and publishing your fundraising page on Mighty Cause. Connect here: https://www.mightycause.com/event/2023nodcc.

3. Make Direct Donations via nodcc.org/donate: Contribute directly through our website and share the link with others through email or social media. Every donation from October 9th to November 13th counts toward our Fall Fundraiser.

We sincerely hope you’ll consider joining us during this crucial fundraising period for our organization. Together, we can make a significant impact!

Fundraisers & Donations

Matching Gifts

Don’t forget to check for matching funds from your employer. Many companies have matching gift programs that will equal or exceed employees’ charitable donation amounts.

Facebook Fundraisers

Fundraising for charities on Facebook is an easy way to help raise money for the NODCC. Simply click on the “Support Nonprofit” option when creating a new Facebook post and select the NODCC as the recipient. Birthdays, memorials, remembrances, and celebrations are great events to encourage giving from your family and friends.

Looking for other ways to support? The NODCC is searching for sponsors and partners who want to support our organization. We encourage all readers of the newsletter to send company names or potential company contact information to info@nodcc.org.

Donate to keep our community thriving!

Donate

See more upcoming events

Volunteer opportunities

(714) 747-0063 I info@nodcc.org I nodcc.org

Click on the icons to follow us!