Struggle with connecting to the developmental disability resources you need? You’re not alone friend!
I remember the moment we learned about our son’s developmental disability diagnosis. We were sitting in the geneticist’s office, not realizing our lives were about to change forever. Looking at the test results in my hand and trying to take in everything the geneticist was saying, I couldn’t help but think, “This is all we get…a sheet of paper with a bunch of chromosomes and a list of symptoms. Really?”.
Certainly, we should at least get instructions for a life-changing moment like this, right? An “Everything You’ll Ever Need to Know About Your Child’s Diagnosis” guide would be handy.
But nope, no such luck. We left with our results in hand, and that was that. We were on our own to figure out the rest.
Eventually, we connected with resources. But goodness! They don’t make it easy (whoever “they” are). Even basic searches can be maddening sometimes.
The thing is, navigating through the unexpected can already be tough. Searching for answers shouldn’t add to the difficulty.
In this post, I’ll share five ways you can easily connect to dependable and trustworthy developmental disabilities resources and start exploring the support and information you need.
1. Developmental Disabilities (DD) Agency
Your state or county DD agency is a must when searching for reliable developmental disability resources. Every state has a DD agency to help serve and support children and adults with developmental disabilities and their families.
DD agencies provide support and services for individuals across their lifespans like early intervention, employment navigation, recreational and day program opportunities, plus informational resources.
According to the DD Act of 2000 to qualify for DD services, “a person must have a developmental disability, defined as a severe and chronic disability that is likely to last a person’s lifetime and developed before the age of 22″. So, the earlier you connect, the better.
You can find your state DD agency at The National Association of State Directors of Developmental Disabilities Services (NASDDDS)
2. Early Intervention (EI) Services
For families with young children, early intervention (EI) is a must for accessing early supports and services.
Shortly after we received Ian’s diagnosis, his pediatrician recommended our state’s Early Intervention (EI) program, Help Me Grow.
Reflecting on it now, I’m so thankful she did. It led us to speech and occupational therapy and connected us with other essential services, including our county DD agency.
EI is a publicly funded program that provides services for free or at a reduced cost to any eligible child and their family. Every state and territory offers an EI program. You can find your state’s EI program on the CDC website.
3. Healthcare Professionals, Therapists, and Educators
By the time Ian turned two years old, he wasn’t meeting his milestones. While family and friends would try to reassure me that delays were common in boys, his pediatrician had a different take on it.
Her concern led to genetic testing, which led to an early diagnosis. This helped connect the dots and gave us a clearer understanding of what to expect and how best to support Ian moving forward.
Partnering with healthcare professionals, therapists, and educators is always a smart option. They can offer advice, suggest interventions, and support parents in navigating the challenges of meeting their child’s needs.
Remember, you are not alone on this journey. There are people available to assist you every step of the way.
4. Online Developmental Disability Resources
Honestly, I have a love/hate relationship with technology. I hate how it consumes my time and distracts me from my day. Although to be fair, that may be a “me problem” and not a “technology problem” (Haha).
But you know what I love? Having a treasure trove of knowledge right at my fingertips! That also means there is a ton of information to sift through to get to the trustworthy and reliable stuff. Here is a list of my tried-and-true developmental disability resources that’ll help get you started down the right path.
5. Fellow Parents of Children with Developmental Disabilities
No two journeys are identical, but nothing compares to the wisdom and understanding of those on similar paths.
Sharing firsthand experiences with fellow parents can be incredibly beneficial. Swapping advice and stories can provide solace and support, especially during those hard moments we all experience.
Also, when you engage, you’re not just forming a network but also building a village — a supportive community to rely on during difficult times and to celebrate happy moments.
Over the years, the village we have built has truly become an extension of our family. Together, we navigate life’s challenges, celebrate victories, and share in each other’s joys and sorrows. Having a village is so important to this journey. I hope you’re able to build and experience your own.
You’re Not Alone
It’s true. Accessing developmental disabilities resources can be challenging. But it’s important to remember that you’re not facing this journey alone. Many organizations, communities, and individuals are committed to helping connect you with the necessary support and resources you’ll need.
By being intentional and making connections, you’re taking positive steps toward creating a supportive environment for your loved one. Keep moving forward, and remember that there are people who genuinely care and are willing to assist you along the way (myself included!).
I would love to hear what your favorite go-to is for developmental disability resources.
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