Commonly Asked Questions About Down Syndrome

By: Kelly Nesbitt, MOT, OTR/L, Occupational Therapist

Down Syndrome, or Trisomy 21, is one of the more common genetic disorders in which children are born with 3 (instead of the normal 2) copies of chromosome 21.

There are common physical characteristics of children with Down Syndrome, such as upwardly slanted eyes, short fingers, small facial features, and a flattened nasal bridge. Children with Down Syndrome also may have varying degrees of intellectual disability, may develop heart conditions, and are at risk for visual impairments. Many children with Down’s Syndrome also have low tone (meaning that their muscles have less of a “taut” quality to them, making their joints appear “loose” or “floppy”).

Because of these physical and intellectual challenges that children with Down Syndrome live with, many children with Down Syndrome receive Occupational, Physical, and Speech therapies in order to address these concerns and make them as independent as possible.

That was the very medical analysis of Down Syndrome… but if you are a parent of a child who was recently diagnosed with Down Syndrome, you are not thinking of statistics, factoids, and medical jargon. You would be thinking, “What does this mean for my child?”

While I am not a parent of a child with Down Syndrome, nor do I pretend to be the holder of all the knowledge on Down Syndrome, I’ll try to answer common questions from my perspective as a Pediatric Occupational Therapist and a person who is proud to have friends with the condition.  

What services to I need to look into for my child?

Young children with a new diagnosis of Down Syndrome (under 3 years old) can qualify through Early Intervention Services through the state of Illinois. Early Intervention brings trained specialists into the home of eligible children with disabilities or delays and provides high-quality therapeutic intervention.

To start services, a parent schedules an evaluation through a Child and Family Connections provider closest to their home (featured in the link above). After the evaluator determines a child qualifies with a 30 percent delay in development in any area, or are at risk of developmental delays, he/she will set up An Individualized Family Service Plan (IFSP). The IFSP lists child and family strengths, needs, resources, priorities, and concerns. It also identifies services to be provided to your child.  

Many Easterseals therapists are trained and credentialed by the State of Illinois Early Intervention System. Parents can request an Easterseals therapist when qualifying for services and speaking with the EI Case Manager. 

Team members could include Developmental therapists, Occupational therapists, Physical therapists, Speech therapists, Audiologists, Social Workers, Nursing, Assistive Technology, and nutritionists, just to name a few.  These therapists can help your child with global strength, communicating effectively, sensory processing issues, fine and gross motor skills, and getting around in the community.

Once a child “ages out” of Early Intervention at 3 years old, many children with Down Syndrome continue to get services as needed through schools and outpatient based clinics, such as your local Easterseals.

Why would my child with Down Syndrome need Occupational, Physical, and/or Speech therapy?

I have worked with children with Down Syndrome as an Occupational Therapist for a number of reasons and most often to address the following:

• sensory processing difficulties
• trouble with transitions
• behavior management
• feeding difficulties
• handwriting
• dressing
• manipulating fasteners
• bathing
• social skills
• global strength
• participating in family and school routines
• access to community activities
• navigating their physical environment safely

I will refer children with Down Syndrome to Physical Therapy and Speech Therapy as well. Physical Therapists can help children with Down Syndrome ambulate and have sufficient strength to be able to crawl, squat down, skip, climb stairs, propel their walkers/wheelchairs or walk.

Speech Therapists can help a child with Down Syndrome improve articulation (intelligibility of spoken language), oral motor skills for feeding and speaking, pragmatic language skills, improving receptive language skills, and accessing augmentative forms of communication (picture boards or high-tech communication devices).

Will my child be able to go to school?

Yes! Whether it’s through an Individualized Education Plan (IEP) or a 504 plan, there are federal and state laws set in place that require schools to make education accessible to children with disabilities.  These plans set specific goals and help place children in the best environment at school to support their specific needs. Just because your child has Down Syndrome does not mean that they cannot have the same educational opportunities as their peers for K-12.

Can my child go to college?

College can be in the cards for your child. Click here for a list of some Illinois universities/colleges that have programs for adults with disabilities. 

Do children with Down Syndrome have friends?

Certainly! Children with Down Syndrome are sweet, funny, kind, and loyal friends. There are organizations that help give kids with Down Syndrome more exposure to similar-aged peers in the context of fun outings and school events.

I am proud supporter of Best Buddies International, whose mission is “to end social, physical, and economic isolation of the 200 million people with intellectual and developmental disabilities.” Best Buddies programs at elementary, middle and high schools pair students with intellectual or developmental disabilities with a similar aged peer and facilitate friendships between them!

My involvement in Best Buddies was one of the most positive experiences of my life and helped inspire me to become an Occupational Therapist. I am still friends with my high school buddies and we regularly keep in contact, even a decade later! Want to learn more? Visit https://www.bestbuddies.org

Do people with Down Syndrome date and get married?

Absolutely! I know people with Down Syndrome who are in long-term, committed relationships. There are even dating apps to help people with disabilities find that special someone.  Like all relationships, it’s important for people to set boundaries, expectations, and have mutual love and respect for one another, so why can’t people with Down Syndrome experience dating and marriage?

Can someone with Down Syndrome have a job and live alone?

Yes! There are job-training classes available through local community colleges and different companies that can lead to employment for people with Down Syndrome.

As for a living situation, people with Down Syndrome have a variety of options depending on their independence levels.

Options include:

• living at home with family
• living at a partially-independent living facilities
• living in “shared living” arrangements in which adults with Down Syndrome can share an apartment with a roommate
• living independently 

Additional housing resources are available through the National Down Syndrome Society.

Will my child have anyone like them to look up to in the media?

Of late, there are more actors with Down Syndrome in the media being celebrated! Some examples include:

• • Lauren Potter from “Glee” – Lauren Potter has amazing videos/PSAs and works a lot

    

    Lauren Potter in her role as Becky on Glee.

    on advocating for people with Down Syndrome – I highly recommend following her on social media

• • Jamie Brewer from “American Horror Story”

• • Sarah Gordy from “Call the Midwife” and “Upstairs, Downstairs”

• • Madeline Stuart – New York Fashion Week model

• • Luke Zimmerman from “The Secret Life of the American Teenager”

• Born This Way – Reality show on A&E that follows the lives of young adults with Down Syndrome through their experiences in their careers, friendships, family, dating, and marriage.

What organizations are there out there to support my child?

There are a wealth of organizations in the Chicago area that are designed to help children with Down Syndrome, both medically and socially. Here are just a few!

• • National Association for Down Syndrome

• • Global Down Syndrome Foundation

• • Easterseals

• • Central Illinois Down Syndrome Organization

• • Celebrate Differences

How can I show my support for children with Down Syndrome?

In addition to getting involved with the organizations mentioned above, the simplest way to show your support is to wear mismatched socks on World Down Syndrome Day which is March 21, 2019! 

The goal of World Down Syndrome day is to raise public awareness and create a single global voice for advocating for the rights, inclusion and well being of people with Down syndrome

While it’s impossible to depict the complexities and life experiences of people with Down Syndrome as someone without the condition, I hope I gave a brief peek into what a child with Down Syndrome’s future could look like. The road ahead may seem daunting once a child receives the initial diagnosis, but parents should take comfort in knowing that there are many resources available to help during every step. The parents I work with have told me of both the amazing successes and the difficult days their child has experienced. 

When it comes down to it, a child with Down Syndrome is still a child who wants the same things in life as anyone else: to be loved and accepted. So let’s show our love and acceptance of people with Down Syndrome by wearing mismatched socks on March 21!

I think that actress Lauren Potter puts it best, “Someone once told me that different isn’t bad – different is just different!”

For more information on the services Easterseals provides for children with Down Syndrome, visit: http://www.easterseals.com/dfv/our-programs/downsyndrome.html