Tag Archives: down syndrome

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 Parker2possible.

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 Jake mom machine
  • 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 glee
      Lauren Potter in her role as Becky on Glee.

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

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

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

world down syndrome day

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

How Physical Therapy Supports Children with Down Syndrome

By: Joanne Pygon, PT, MS, PCS

Physical therapy plays a crucial role in helping a child who is diagnosed with Down syndrome (DS) reach their highest potential.  What that therapy looks like through a child’s life changes as he/she transitions from newborn to teenager.  Hypotonia, weakness, cardiac and respiratory issues are some of the challenges a PT will address.

0 – 24 months:  The physical therapist (PT) is one of the first healthcare professionals to work with a parent and their child to help build a strong foundation of strength and movement.  Depending on the medical complications a child faces, the PT works regularly with the child to build strong muscles so he/she doesn’t develop compensation that can affect their abilities later.

Vitiello_Cody_1

The parents or caregivers will have activities to work on daily to help their child reach gross motor milestones.  The child may need special braces for their feet to improve alignment so that muscles can maintain length to function efficiently.

Compression garments such as a SPIO, Benik or an abdominal binder, may be considered to aide postural alignment and respiratory function.  Aquatic therapy can be beneficial if a child enjoys the water.  This gives him/her an opportunity to be challenged in new and fun ways, while also building strong swimming skills and an enjoyment of water for future exercising.

2 years – 5 years:  During the preschool years physical therapy continues to address higher level gross motor skills.  It may be appropriate for a child to be involved in group therapy sessions where peers motivate each other, along with providing social and communication opportunities.

Easterseals has groups like Mighty Movers, Build Your Muscles, Build Your Brain (TAAP), Get in the Game and more that enhance a child’s gross-motor skills. Most children start in a school program upon turning 3 years old.  PT is provided in the school to address issues that interfere with academic success.  This might be enough therapy for a child or the parent may choose to continue private therapy depending on the child’s needs and goals.  If the child has orthotics (foot braces), then a PT should be following the child periodically to check for fit and continued need.  During this time, families can explore park district programs in their area, especially gymnastics classes or swimming in order to build balance, strength and coordination.

Easter Seals Screen Grab 12.jpg

5 – 10 years:  Throughout these years, a child involved in community-based programs could seek PT consultations.  Some children may enjoy a summer PT group to build strength and confidence such as our rock climbing group.  Biking can also be a great opportunity for fitness and socializing.  There are several “learn to bike” programs in the community and a PT can help a child develop this skill.  Many children become involved in swimming and this becomes their life long fitness.

Jake mom machine.jpgTeenage years:  Encourage physical fitness, which is important for any teenager or young adult. Hopefully as the child faces the challenges of being a teenager, they have confidence in their abilities and can continue to be a part of a sport community, like a swim team, running group, or special rec team.  The child may need to check in with their PT a bit more to update home programs, as growth may affect their posture.  While braces may not be needed anymore, foot inserts may be necessary to support his/her feet in the best possible position.

 

Most importantly, set high expectations and enjoy all the gifts children bring to families!

For more information on our Down Syndrome services, visit http://www.easterseals.com/dfv/our-programs/downsyndrome.html.  To get started or learn more, call us at 630.282.2022.

Audiology Intervention for Children with Down Syndrome

By: Karyn Voels Malesevic, AuD, CCC-A, Manager of Audiology and Family Services

Children who have Down Syndrome can often have hearing loss, so a therapy center that also has an Audiology Department onsite can make coordinating care easier. Their hearing loss may range from permanent and needing hearing aids to having frequent middle ear infections and require consistent hearing tests.

According to the research article Understanding Hearing and Hearing Loss in Children with Down Syndrome, “Children with Down Syndrome are at a greater risk for permanent and transient hearing loss as compared with their typically developing peers. Long-term consequences of late or failed diagnosis, particularly in this population, can significantly affect quality of life, including school performance, speech and language, behavioral challenges, community engagement, and safety. Therefore, ongoing audiologic monitoring and otologic management is highly recommended for this group into adulthood.”
hearing2

Easterseals DuPage & Fox Valley has Audiologists in our Elgin and Villa Park centers who are experts at working with children that may have been considered “difficult to test” by other clinics.

We are able to fit hearing aids and make repairs and earmolds on children and adults through state programs such as Early lntervention, Medicaid, DSCC, ORS, and via private insurance or private pay options with very competitive pricing.

At Easterseals we work with the local educational Audiologists, who serve children with hearing loss that are in school. That work allows for cohesive coordination between school testing and any hearing aid or other specialized services that may be needed at an outside clinic.

We are also proud that we can continue to see the children in our care as they grow up into adulthood via our audiology clinics.

For more information on our hearing services, visit eastersealsdfvr.org/hearing.

 

Down Syndrome Enters a New Era

By: Dr. Peter Smith, Associate Professor of Pediatrics, University of Chicago

Editor’s Note: Through a partnership with the University of Chicago, developmental- behavioral pediatrician, Dr. Smith leads a new Neurodevelopmental Disability Clinic at Easter Seals DuPage & Fox Valley which provides support for children with Down Syndrome, ADHD or Autism, disabilities that may include complex medical and emotional issues.

Dr. Smith also leads Easter Seals DuPage & Fox Valley’s multi-disciplinary team including an occupational therapist, speech-language pathologist, developmental therapist, audiologist and parent liaison in the Medical Diagnostic Clinic. This clinic specializes in early diagnosis of young children.

Current Processes Are Not Working

Individuals with Down syndrome (DS) are living longer and healthier lives than ever.  There is consensus that complete information needs to be offered to all parents of children with Down syndrome (both pre- and postnatal) regarding the current experiences, health outcomes, lifespans, and quality of life for individuals with DS.  DS represents a dramatic “success story” and the lives of individuals with Down syndrome are improving in every way measurable.  Unfortunately, this good news is too often not being shared with new and expectant families.  Doctors are not prepared for this task and parents report frustration with the process.

Maggie_1.jpgOn the Cusp of Potentially “Game Changing” Therapies

In addition to the dramatic changes that have already occurred, DS as a clinical and research arena is on the cusp of developing even newer therapies that have the potential to improve cognitive outcomes.  Multiple research teams have protocols already enrolling study subjects.  For example, the team at the Jerome Lejeune Institute in Paris has an active study underway  that employs a combination of folic acid and thyroid hormone, targeting infants and primarily measuring cognitive performance during and after therapy.  Their preliminary work has shown significant promise and preliminary results might be released later this year.  Because of their early successes, there are ongoing efforts to mount a similar study here in the United States.  The NIH has recognized this new era and has launched an international registry (see https://dsconnect.nih.gov ).  However, this “breaking news” has not been widely disseminated.  Many worry that recruitment to these studies could be diminished due to the lack of awareness by primary care providers and the general public, which would slow the progress of the studies.

01_Lucas_Vasquez.jpgA Growing Number of States Have Addressed the Issue: Including Illinois

Because of the lack of general knowledge of both the dramatic improvements in the lives of individuals with DS and the emerging clinical trials in DS, a coalition lead (of course) by family support organizations has emerged.  They have initiated a new “information rights” movement that includes clinicians, policymakers, legislators, and researchers that has worked to enact new state laws addressing the problem of misinformation.  The first to successfully pass legislation was Massachusetts: in 2012, a coalition helped to pass a state law, mandating that clinicians provide accurate information and Referral to parent support organizations.  Most recently, Illinois, passed unanimous legislation in 2015, which proves that this is truly a bipartisan issue.

To learn more about our specialty clinics including the Medical Diagnostic Clinic, visit eastersealsdfvr.org.