News from the NODCC


Summer is winding down, and stores are stocking their shelves with school supplies. The sight of school materials in stores used to mark the end of summer, though today's retail marketing appears to stock the shelves earlier and earlier these days. The back-to-school season tends to take on a new feeling each year for me. When my kids were younger, we had our typical routines - school clothes shopping day, school supplies shopping day, backpack organization day, room cleaning day. Preparing for the beginning of a new school season was a well-oiled machine in the Oren household, and it always filled me with excitement about the potential growth and the list of goals I hoped my boys would accomplish. As a public educator for 18 years, the back-to-school routine was a sacred schedule that we followed without question.


But then, one day, I started to question this routine. I'm not sure if it stemmed from the impact of quarantine when Covid-19 isolated us to our home or maybe from a new perspective caused by getting older. However it happened, we found ourselves analyzing whether public school was truly the best place for our youngest child. We had already gone through every single school phase with our oldest son from pre-k through graduation, navigating our way through various school changes, IEP meetings, tears and fears, puberty, early adulthood, dating, driving. We felt prepared to move through these same phases with our youngest child. But something was tugging at our hearts that felt different, and we had to pause for a moment to think about what was happening.


As an educator, I am approached by parents all the time who ask me whether public or private school is the best choice, and my answer has always been ¨it depends.” My presentations at various conferences and regional gatherings covered topics such as educational strategies for students with disorders of the corpus callosum, information on the legal protections provided under IDEA, and differences between 504 and Special Education. I have always said that choosing the right school setting must always be based on your child's needs and the phase of life he/she is in. The decision is also included by the needs of your entire family as a whole, and these needs are sometimes constantly changing. For us, the elementary years were crucial in public education because we relied on the protections under IDEA. Now that the elementary years were behind us, we found ourselves searching for more specialized supports that became a struggle for public school to carry out.


I am doubly blessed to have two boys who bring me endless love and laughter. They are my biggest supporters and also my best teachers. Our oldest, Jordin, is 21 with complete agenesis of the corpus callosum, and our youngest, Shafer, is 14 with Autism and epilepsy. We have experienced many challenges along this journey, and each child's educational path has been different and unique. Jordin´s condition presented itself like a learning disability in the school setting, and we spent many hours reteaching concepts until he could grasp them. His long-term retrieval made it challenging for him to succeed on unit and standardized tests in school, and these difficulties became more pronounced in the secondary years when graduation implications set in. Jordin always had a happy disposition and rarely struggled with behaviors. Our worries were more about his naivete, potential manipulation due to lack of understanding of subtle social cues, using higher level problem-solving, and driving safety. Shafer, on the other hand, had severe behavioral challenges since the age of 2. He couldn´t function in a traditional daycare or school for many years. Kicked out of numerous daycares and bounced from ABA to speech to OT therapies in between public school, Shafer struggled to simply breathe in a shared space with other people. As his epilepsy raged, he fell further and further behind, missing out on many critical skills during the formative years of his development. Once the right combination of medications finally stabilized his seizures, we discovered that Shafer had great capacity to learn along with amazing long-term retrieval. But he was behind. Years behind.


So here we are in July contemplating our options. Shafer is supposed to start 8th grade, but his learning gaps are pronounced. Do we continue to supplement public school and follow the slow but steady path toward closing the gaps? Do we change to a charter or private school and forego the full protections under IDEA to achieve smaller class sizes in schools that have more liberty to deviate from the strict state curriculum? Or, do we just take charge and find a homeschool curriculum that we will do ourselves? And this decision can't be made in isolation. We still have our other son, Jordin, who is now an adult living at home after completing 2 years of community college out of state. He is no longer in school but continues to need our support to learn how to work, budget, and get around town.


I think about the many parents I have met over the years at NODCC conferences and local regional gatherings, and I know this strikes a chord with many. We are all struggling to make the best decisions for our kids and to do what's right for them and prepare them for the best possible future. Sometimes this means making a change and trying something new. I also know that the thought of returning to school can bring anxiety to lots of families. Many of you may be feeling exhausted - tired from full-time caretaking, tired of fighting to get what you believe your child needs in school, tired of having to explain what and where a disorder of the corpus callosum is. Parenting is not easy. Parenting a child with a disability can feel doubly challenging. 


What I would like to say to you is listen to your heart and follow the path you believe is right for your child. It might be homeschool one year, public school the next, and private school near the end. There is no single, magic way to educate your child. As parents, we do the best we can, lean on our people, and let love lead the way. The NODCC community continues to provide opportunities for families to connect, share, and learn from each other. I am so thankful for the families and friends I've met along my journey which has allowed me to share my fears and see the encouraging journeys of those who have forged ahead of us. Sometimes just knowing that I can text or call others who truly know and understand my struggles can help me through the difficult days. As for me and my family this school season, we took the time to interpret the tugging in our hearts and finally have a plan that is going to open a new chapter for us. The back-to-school excitement has replaced the anxiety, and that in itself is reassurement that we've made the right choice.


Below are a few back-to-school tips submitted by NODCC community members:


"Try to get an overview of curriculum so you can have table top conversations about related topics and work on emotional language skills to help your kids connect to others in meaningful ways. See if the school can provide a "friendship teacher" - a social worker - who can be a safe place for your child to seek out support in navigating social situations and support good friendships." - Patty


"We put together a fun playlist of her favorite songs to listen to on the drive into school. She looks forward to it and gives her a sense of familiarity as we start a new school year." - Tara


"Safety first, routine on the daily, and if it’s the best morning 'restart', if we are a lil late that’s perfect also and have fun time flies!" - Marissa


"I sent an overview of my son’s strengths, challenges, expectations for the year and things to look out for to every teacher - gym, music, everone. I shared it via email prior to the first day of school and welcomed any questions. Every teacher thanked me for helping them help my son. My son is now happily heading into his sophomore year at Marist which has an amazing learning support program." - Katie

Meet Ilana Davlin: Thriving ACC Adult and the NODCC's Newest Board Member


By Miriam Bernard



The NODCC has a wonderful new board member we’d like to introduce to our community: 29-year-old ACC adult, music enthusiast, and visionary Ilana Davlin. Ilana has been involved with the NODCC since 2018, but her story with her DCC goes back much farther than that. Ilana was diagnosed with ACC before she was even born, but with so little research surrounding the world of DCCs in the early 1990s,  Ilana and her parents spent much of her childhood and adolescence frustrated because she was misdiagnosed with several conditions that didn’t give answers why certain types of processing were so difficult for her. At the age of 24, she found herself fed up with the lack of understanding of herself, and chose to research the ACC aspect of her diagnosis. Everything changed that day as she began to recognize herself and her behaviors in the research she read. This led her to connect with the NODCC and that’s when the course of her life truly changed. She was able to see herself and who she is in the attendees, and felt a sense of self-understanding she’d lacked up to that point in her life. She is now able to say to her friends, “This is why I am the way I am. Show me a little grace; I’m fine.”

Click Here to Read More

Interested in getting more involved with the NODCC? We are looking for volunteers on a few of our committees. See our volunteer page here, for how you can help.


Do you have a passion for finance and want to make an impact? The board is seeking a skilled individual to become the treasurer. If you're interested in taking on this crucial role, we invite you to volunteer and share your expertise. Please fill out the form here to get started.

For those in Illinois and surrounding states, we are looking to expand our conference committee to help with next year’s event. A Chicago area family gathering is planned for August 12 at 12:00 pm at the conference hotel. Lunch will be provided and families are welcome!


Marriott Chicago O'Hare

8535 West Higgins Road

Chicago, IL 60631


Please email Barbara at info@nodcc.org if you will be joining us on the 12th or if you would like to be part of our local conference team but aren't able to attend the lunch.

New York Gathering Fun


Thanks to all who joined us at the July 29th New York gathering! It was wonderful learning, sharing, and connecting with our community members. 


Want to host an event or local gathering? Email Barb Fonseca at info@nodcc.org to get it on the calendar!


Do you have a furry, feathered, or scaled friend who has made your or your DCC family member's life better? We'd love to hear about your relationship with your family pet! 

   Click Here   

Fundraisers & Donations


Show Your Support for the NODCC Through Annual Membership

The NODCC was founded to help those who are caring for someone with a disorder of the corpus callosum (DCC) or an individual living with a DCC by providing information, resources, and facilitating connections between members. Memberships help keep our operations and programs going – but most important, memberships ensure we can serve those living with a DCC in the future.


When you join or renew your dues for membership with the NODCC, you are investing in the future of the organization and ensuring we have the resources to help others for years to come.


Please consider becoming a member of the NODCC to pay it forward!


Click Here to Become a Member


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

As we develop the 2024 DCC Conference schedule, we appreciate your time in completing this simple 15-question survey to assist us in understanding our NODCC community’s desires and developing the best conference schedule possible. 


If you have not already, please fill out our survey by clicking the button below.


We look forward to seeing you next summer!

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Contact Us

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

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