Receiving a diagnosis that your child has an intellectual disability or Down syndrome can be a lot to process, accept, and understand. It can bring with it a range of feelings, from fear to grief to joy, not to mention all the worry about the stigma, stereotypes, and misconceptions that often accompany these diagnoses — such as the assumption that people with Down syndrome are always happy, or that someone with an intellectual disability can’t think for themselves, or have desires or opinions.
Nancy Litteken, executive director of Club 21 Learning and Resource Center, tells Undivided that while providers will typically begin telling parents that their child has Down syndrome with the phrase, “I’m sorry,” she prefers starting with, “Congratulations!” Parents need a mindset that people with intellectual disability and Down syndrome are important in this world, that they belong, and that they can do amazing and hard things. “You emphasize and notice what gives them joy, notice what they can contribute to the world,” she says.
Just as every individual is unique, so is every case of intellectual disability and Down syndrome. As Emily Mondschein, executive director of Gigi’s Playhouse, tells Undivided, “If you know one person with Down syndrome, you only know one person with Down syndrome.” So how can we better — and holistically — support our kids with intellectual disability and/or Down syndrome from diagnosis and medical care through school and beyond?
We sat down with some of the fiercest advocates and experts out there to gain insight into what parents need to know, including info on diagnosis, assessments, IQ tests, school accommodations, inclusion, common medical issues, tips and advice for parents, and more.
Provider shoutout
Nancy Litteken is the executive director of the Club 21 Learning and Resource Center in Pasadena. She has a Master’s degree in Special Education/Deaf Studies and has worked in Special Education with LAUSD for over 30 years. She grew up as a hearing child of Deaf parents and is a parent of an adult daughter with Down syndrome. Nancy and her husband Mike were among the founding families of Club 21 in 2009, and during this time Nancy volunteered as Club 21’s first administrator while still working for LAUSD! Find her featured in our articles Down Syndrome 101 and Supporting a Child with Down Syndrome at School.
Undivided Office Hours
Our next Office Hours speaker is Undivided Director of Health Plan Advocacy, Leslie Lobel! On Wednesday, July 12 at 12:00 p.m. PDT, Leslie will be available to answer all of your questions about insurance, including pre-authorizations, explanation of benefits, out-of-network claims, optimizing in-network coverage, and more! Stop by for five minutes or the whole hour. Bi-weekly Office Hours are virtual Q&A sessions with experts that are open to Undivided members only, so if you’d like to attend, sign up here to begin your free Kickstart!
Undivided Conversations: Dr. Chad Rose
Did you miss our conversation with Dr. Chad Rose, professor of special education at the University of Missouri and Director of the Mizzou Ed Bully Prevention Lab (featured in our Bullying 101 article)? You can still watch the full video on our YouTube page! In our ongoing series, Undivided Conversations, Dr. Rose talks all about bullying and bullying prevention!
- As summer stretches on, it can be tough to find activity ideas, social groups, and accessible events. Connect with parents in our private Facebook group to share your recommendations! Join our parents-only group on Facebook→
- How do we help our kids with disabilities socialize with peers and build valuable friendships? Listen to insights from inclusion expert Dr. Mary Falvey. Watch on Instagram→
- Wondering what college opportunities are possible for your child with ID? Hear Cate Weir of Think College talk about what to expect. Watch on YouTube→
- We’d love to connect with you on LinkedIn and share more disability resources for parents! Connect with us on LinkedIn→
- Wondering what services and supports are available for your child’s unique needs? Start here→
This newsletter was originally sent to our subscribers on 7/7/23. Subscribe to our newsletter to get more resources like this in your inbox, or check out our full library of articles, templates, and videos at undivided.io/resources.
