Our only child, Emlyn, is 4.5 years old and happens to have Down syndrome. But as we like to tell people – that’s not the most interesting thing about her. Emlyn is smart, loving, mischievous, stubborn, curious, and lots of fun to be around. She likes singing and dancing while watching Mary Poppins, learning with her iPad, and playing with friends. We have high hopes for her future and see her living a long and healthy life where she is mostly independent, works at a job she loves, and is surrounded by supportive friends and family.
These are goals that we do not just take for granted. In fact, we don’t take anything for granted. First smiles, giggles, steps and words, while a big deal for any new parents, brought indescribable joy to our family because they we worked so hard for them. For Emlyn to achieve what we know she is capable of, we must be vigilant for medical problems; work with the best speech, physical and occupational therapists we can find; ensure she’s in a school setting that’s supportive, yet challenging; and still find time to let Emlyn just be a kid.
One of the biggest struggles for our family revolves around Emlyn’s education. Research shows an inclusive setting where children of all abilities learn together, if implemented correctly, benefits all children more than segregated settings. While federal legislation provides protections and outlines requirements, schools appear to be challenged to appropriately implement the law. Special education is a service, not a place. Where we live in Gwinnett County, systems are not in place to ensure children attend their neighborhood schools; rather, segregation by disability type occurs. This is unacceptable. We need Georgia to be a leader in innovative, research-based teaching methods – for the sake of all kids, not just those with Down syndrome.
We also worry for Emlyn’s financial future. While we expect her to work, it is possible she will not be able to cover all of her financial needs. We don’t want her to use government benefits and we plan to provide the extra financial resources she might need. However, the current system is not friendly toward people with disabilities who work, or whose parents cannot cover 100% of the costs easily. It would be helpful for us to have a tax-advantaged way to save for Emlyn’s future, much like parents use 529 plans to save for college. We may or may not need money for post-secondary education, but we will most certainly need to help pay for Emlyn’s housing, medical care, transportation, and supportive services throughout her life.
We are very excited about the Down syndrome research that’s currently taking place. Scientists are close to making great strides in improving the cognitive ability of people with Down syndrome – and with that can come greater independence, less reliance on social programs, and better quality of life. This work is essential to Emlyn’s future, yet it is woefully underfunded. The National Institutes of Health has a Down syndrome research plan, and researchers in major academic institutions know what work needs to be done, but the funds are not there to complete the work. As a family, we fundraise for research, but we need state and federal support as well. Compared with other conditions with similar burden, Down syndrome is funded considerably less. It’s not just our kids who will benefit from this important work – people with Alzheimer’s disease, cancer, epilepsy, and other developmental disabilities will see the benefits too. The work simply needs to be supported.
Down syndrome is not the scary thing we once thought it was. The National Down Syndrome Congress has a campaign that states, “we’re more alike than different,” and we think that rings true. Down syndrome brings challenges, to be sure, but they’re no match for the joy Emlyn inspires.