5 Things Parents of Kids with Disabilities Wish They Knew Earlier

Over the years we have worked with thousands of parents to help them navigate disability and neurodivergent care, and get the services and supports their kids deserve. And while yes, there are always key hot topics—for example, IEPs, Regional Center, and IHSS—there are also several recurring themes where we have heard parents say, “I wish I knew this earlier!” Below are 5 sentiments we often hear from parents, and expert and parent advice for how to get ahead of these things now.

1. How isolating parenting can feel

Whether parents are just receiving a diagnosis or are deep in the trenches figuring out IEPs or public benefits, we often hear about how isolating parenting can feel.

Whether you’re looking for solidarity or to share knowledge, connecting with other parents who share your lived experience is key. Parents often find both community and tactical insights at our member office hours, but going broader is another great option. Chris Arroyo, Deputy Director of Policy and Public Affairs at the California State Council on Developmental Disabilities, strongly recommends joining parent support groups. “Join multiple groups. There are groups organized by topic, by age, by diagnosis, by language. Join as many as you can and learn, learn, learn.”

2. The knowledge gap can be painfully humbling

Parents often share with us that the knowledge gap can feel overwhelming and humbling, which is one reason we work year-round to develop and update our deep resource bank to address common topics and parent questions.

Undivided parent Leeza also recommends bridging the knowledge gap at school, which she has found helpful for navigating IEPs. “Meeting other parents at the school, in my opinion, is one of the best things you can do because not only are you building your own support network that you can openly ask questions to, but you get to talk to other people who are dealing with your same district so you can learn how they operate.” Leeza recommends getting to know other parents in your class to see who might be willing to talk openly with you about their experience.

Arroyo also encourages a tactic to help manage information overwhelm. “Try and become an expert on just one topic each year. Maybe in the first year, learn about your child’s diagnosis and the general kinds of treatments that are most effective. Then maybe year two you’re looking into one of those treatments. Then maybe year three you’re looking into occupational therapy, physical therapy, or whatever it is your child or you need.”

3. Organizational struggles are overwhelming but can be overcome

Organization can be challenging for any parent or caregiver, but we often hear from parents that organizational overwhelm shifts to a new, intense gear given documentation volume.

Undivided parent Tosha shared, “I was very disorganized before. My child has lots of different providers, services, entities she works with. You should have seen my file cabinet with all the different papers sporadically thrown places.” Tosha shared that being able to upload all of her documents through the Undivided digital binder has been a lifesaver, allowing her to have all of her records at her fingertips, in one place.

4. You need to get comfortable speaking up and self-advocating

Many parents we work with have shared that they have learned how crucial it is to use their voice in order to best advocate for the services and supports their kids need and deserve. While it may feel daunting at first, learning to speak up and self-advocate—which many parents gain confidence with through our member office hours and/or by working with an Undivided Navigator—is a game changer.

Undivided parent Sandra encourages parents to speak up: “Don’t be afraid to ask questions of the team and to use the resources at hand.” And when it comes to IEP meetings, Undivided parent Addie recommends advocating for your and your child’s needs by taking your time. “Walk in ready not to sign and ready to do your homework before you do anything else. Because it might sound great on paper and later on you might learn that you could have gotten so much more—things that really were geared to helping your child, not things geared to any typical child on the spectrum or with a specific disability. That’s something I wish I had known from the start.”

5. Parents need and deserve support too

Parents spend so much time working to support their kids, but getting support in the journey is also essential. Parents often share that opting for 1:1 dedicated support with an Undivided Navigator not only helps them prioritize goals and identify goals that weren’t even on their radar, but the partnership has helped them find their voice, learn how to partner with their child’s school, and bring calm to chaotic feeling situations.

In an interview on KTLA, Undivided parent Lelah Coppedge shared that the way she and Undivided Navigator and parent Jennifer Newsome prepared for her son’s transition to high school was transformative. “I walked in so empowered, knowing what to do and what he deserved. He is really thriving now.” In the same interview, Newsome urged parents to get the support they need. “Parents have gone months, years, without the critical support they need. The sooner you can find out what is out there and what can benefit your child, the sooner you can get your child’s needs met.”

See some of our popular resources below. And if you need further support from Undivided—for example, help applying for public benefits or preparing for an IEP meeting and access to members-only office hours with specialists in insurance, public benefits, and special education—sign up for a free Undivided trial membership.