At last, another Q&A! I’m merging two questions today:
“How far behind a non DS child is a DS child? Typically. Like at 18 are they mentally at 12? Does that make sense?”
“How independent do you think/hope Leah will be able to be as an adult? What type of living situation would likely be appropriate if she wasn’t living with you and Mandy? Will she be able to have a job? (I know this question depends on a lot of unknowns …)”
First – we use people-first language, so we say “child with DS” and not “DS child.” FYI. 😄
I think a key thing to remember with all kids, regardless of chromosome count, is that skills, cognition and maturity operate on a number of axes, and each skill set has its own average age range. Some kids learn to read at 2. Some kids learn to read at 5-6. Some kids move out of their parents’ homes when they graduate high school (or earlier) and some are still living in the basement and playing video games at 35.
So with that in mind, I will say that early milestones for kids with Down Syndrome operate on a wider range than they do for typical children. For example, the typical age range for a child to walk unassisted is 9-18 months, whereas for children with Down Syndrome it’s 1-4 years. So while you can say that on average, kids with Down Syndrome may take longer to walk, it’s entirely possible for a particular child with Down Syndrome to be walking well before a peer with typical chromosomes. I’m attaching a chart with some similar milestone ranges. The developmental gap tends to grow as the kids get older, but I still don’t think it’s possible to ever say that “people with Down Syndrome are X years behind people with typical chromosomes,” because both groups operate on such wide ranges.
People with Down Syndrome experience the full range of human emotions. They can be sweet and friendly, they can be sneaky and manipulative, they can be loving and devoted, they can stir epic drama. They can be stubborn. They can have their feelings hurt. They can fall in love. Kids with Down Syndrome are kids. Teens with Down Syndrome are teens. And adults with Down Syndrome are adults.
Intellectually speaking, most folks with Down Syndrome have either mild or moderate intellectual impairments. That does not always necessarily correlate with developmental age – a kid can be terrible at math, but have an excellent visual memory or be exceedingly perceptive about people’s feelings. Sometimes they may have to actively learn and consciously perform tasks and activities that come naturally to others, and sometimes they see things that the rest of us miss. Folks with Down Syndrome can have jobs, often with support and coaching in the workplace. I believe it is uncommon for them to be able to earn enough to be wholly self-sufficient, but I think that’s true for many people, and it’s important for typically-developing people to see that people with Down Syndrome have a lot to contribute to society, even if they need a little help along the way.
As far as living independently is concerned, I think the best answer I can give for Leah is “I don’t know.”
Historically, folks with Down Syndrome spent the majority of their lives in state-run institutions. Today, we know that this is exceedingly costly – in dollars, certainly, but even more so in the lost value that folks with DS have to offer to their families and to society, and in the loss of dignity that comes with being warehoused and hidden away. Programs today are aimed at helping people with disabilities reach their potential, remove barriers to access, and be supported as valued members of their communities.
A small number of adults with Down Syndrome live completely on their own. A larger number can live independently in a supportive environment, with a roommate or aide, or in a community group home with support staff. Some adults with Down Syndrome need more help throughout the day. A lot depends on their physical health as well as their cognition, and both can certainly decline as they get older, as with any individual. I think that many folks with Down Syndrome who live outside their parents’ homes do so with the support of public agencies that provide services like housing coordination, independent living skills, money management, etc.
Perhaps some of the parents of adults with DS would like to chime in here regarding your experiences?
