More than 20 years ago, we fostered and then adopted Rachelyn. She was a happy-go-lucky little girl who had Down syndrome. Rachelyn also had autism, Grave’s Disease, and Celiac disease, so we had our hands full. She was placed in our home as a foster child at 5 years of age, and we adopted her five years later! She was placed with us not because her parents didn’t want her, but because they were unable to care for her many needs. My wife and I never cared for a child with a developmental disability before, so this was new to us. But she was affectionate and compliant, though at times she displayed a streak of stubbornness. Not necessarily aggressiveness, but more passive-aggressiveness. Caring for her was a work in progress. It was on-the-job training. Every experience was a new experience and a lesson in patience; it was a marathon, not a sprint. But was it worth it? Absolutely!
Down syndrome is a genetic condition where the child is born with an extra chromosome. This may result in physical differences in their eyes, nose, and ears. They may have physical ailments in vision and hearing as well as digestion. Children with Down syndrome may be smaller in development than their peers and may also have weight issues. Rachelyn needed a special diet not only because of her Down syndrome, but also because of her other ailments. Check with your doctor. They may vary in their mental abilities as well and may need help developing new skills. Generally speaking, they are happy and affectionate and social. Here are 3 things to know when adopting a child with Down syndrome.
1. Adopted children with Down syndrome are eligible for special needs services
Down syndrome is a permanent condition. There is no pill to make them get better. Therefore, as an adoptive parent, you will have to enroll your child in long-term care early on, even before adoption. This includes enrollment in DDD (Division of Developmental Disabilities) services. Rachelyn also needed speech therapy and occupational therapy to help her develop fine and gross motor skills. Check your state to see the requirements of enrollment. Before your adoption is finalized, your child should also qualify for an adoption subsidy, which is a reimbursement from the state for children with special needs. This will help offset the costs of travel, room, board, and other special services that you would not normally have with other children. Check with your caseworker to determine what type of paperwork you need to fill out.
2. People with Down syndrome can lead happy, “normal” lives
One of the things that helped Rachelyn was engaging her in “normal” activities with others that were like her so she didn’t feel like she was left out. Activities like summer camp, Special Olympics, and regular play dates with other kids with and without Down syndrome helped her develop social skills needed in real life. When Rachelyn turned 18, she moved into an adult developmental home where she now receives 1:1 care. She attends a day program where she can gather with other adults with special needs to learn job skills according to her development. Down syndrome people are generally happy people! They have the same hopes, dreams, and goals that we all do.
3. People with Down syndrome can excel!
People with Down syndrome can hold jobs; they can attend school; they can date and can even become Hollywood actors! One young lady competed in a beauty pageant. Another Down syndrome child even won the 2018 Gerber baby of the year. Not all children with Down syndrome may excel to this level, but they should not be held back just because they have this condition.
Adopting and raising a child with Down syndrome is not without its challenges. It can be exhausting. But it is also a blessing. It is an opportunity to pour your life into someone else who needs lifelong assistance. Surround yourself with positive people who have been down this road before. Get respite when needed but also make positive memories with your child. If I had to do it all over again with Rachelyn, would I? Absolutely! If you have that opportunity, take advantage of it and don’t let it pass you by. You will need to take care of yourself from time to time but it will be well worth it.
