World Down Syndrome Awareness Day, celebrated on March 21, encourages people all over the world to raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities.
For many parents, their child’s diagnosis of Down syndrome is often accompanied with an explanation of all the obstacles your child will face and the many more milestones they will need help reaching.
But as any parent can attest, all kids need help from the adults in their lives to be the best versions of themselves that they can be.
Our youngest daughter Salima has Down syndrome. Just a few months after Salima was born, I was informed by a mentor parent that our world would be filled with providers. Early Interventionists, Developmental Specialists, Respite and Habilitation Providers, and Speech, Occupational, and Physical Therapists have come in and out of lives—some good, some not so good, and some great, but all members of what I dubbed “Team Salimable.”
Whether learning to walk with Miss Kristal, practicing conversational skills with Miss Jenna and Mr. Joseph or tying her shoes with Miss Jaylee, Salima has thrived because of the additional measure of skill and patience contributed by providers to this often overwhelmed, but well-meaning family.
In 2017, we moved to a new home and that meant that Salima would begin attending a new school and we would need to find new providers. That’s a big deal to students like Salima.
Thankfully, our state has an education scholarship account program where parents can customize their child’s education through arranging therapies and affording a private education.
Through Salima’s Education Scholarship Account, we were able to send her to a school that fits her learning style and embraces the unique perspective she brings.
A year later, and Salima is the happiest I have seen her. Her school remains a great fit for her, and her classmates love and accept her. Earlier this year, she even got to participate in the back-to-school pep rally. She is included in both academic and social activities and it’s made a huge difference.
However, it took us almost six months to find new providers who could help Salima continue on her journey to independence.
That struggle to keep Salima’s continuity of care gave me an idea that would help other families.
In this digital age, every child who needs and is eligible for developmental services should not have to go without because their parents can’t find providers. They shouldn’t have to make decisions about where to live or work out of fear of not being able to secure developmental services or have their choice of schools and medical care for their loved one.
And, their loved one should not have to go without supports for an extended period of time, and often cannot afford to go without services for six months, like we did.
Many people with neurological differences are also not aware of the available federal, state, and private benefits and resources available.
Earlier this year, I created a non-profit organization to connect families of students with unique abilities to service providers and resources.
My hope is that families can redirect the time they spent looking for available service providers into time with their family.
Our family will celebrate World Down Syndrome Awareness Day by being thankful for our incredible daughter Salima and by empowering other families with the information they need to help their child.
Veronica Ragland lives in Arizona with her husband and two daughters. She created Salima’s Purpose LLC to help families searching for providers to help their children reach their full potential.
