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Down Syndrome: Helpful Resources for Parents

March 21, 2024     By Boys Town Contributor

Child Development, Parent-Child Relationships, Parenting Skills

If you have a child who has just been diagnosed with Down syndrome, you are probably trying to learn what this will mean for your child and your family. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of normal development and causes the physical characteristics and health problems associated with the condition.

Fortunat​ely, numerous resources for parents and caregivers of children with Down syndrome will help your family adjust to a new reality and help your child lead the healthiest and most fulfilling life possible.

Resources you might find helpful include:

  1. Online resources for parents of children diagnosed with Down syndrome include a number of well-regarded organizations. When you search these websites you'll find information, downloads and even webinars that will help you learn about Down syndrome, can connect you with valuable resources and keep you up to date on the latest research and findings. Some of these organizations include:
  2. Local organizations in many communities have organizations or support groups specifically tailored to individuals with Down syndrome and their families. These groups can provide a network of support, information and resources for navigating challenges and celebrating achievements.

  3. Specializededucational programs designed to meet the unique learning needs of individuals with Down syndrome are widely available. These programs focus on developing academic skills, socialization and independence. Once your child with Down syndrome is three, many options may become available to you through your local school district.
     
  4. Technology and assistive devices have opened up new possibilities for individuals with Down syndrome. From communication apps to adaptive devices, technology can enhance independence and facilitate inclusion in many aspects of life.
     
  5. The Down Syndrome Clinic at Boys Town National Research Hospital is your resource for all things medical if you are local or even regional. Children with Down syndrome have unique medical and clinical needs and often have co-occurring medical conditions. Boys Town Hospital addresses those needs by providing wraparound care for the whole child. You'll find that we provide coordinated, comprehensive medical, behavioral and emotional care, as well as educational support.

    Our team approach includes specialist and clinicians working together to address your child's needs in:
    • Pediatric Neurology
    • Endocrinology
    • Audiology
    • Behavioral Health
    • Ear, Nose & Throat
    • Genetic Counseling
    • Nutrition
    • Speech-Language Therapy
    • Social Work

The journey of a child with Down syndrome can be enriched by the availability of diverse resources and support systems. By harnessing these resources, we can create inclusive environments where every child is valued and empowered to thrive. 

​Make an appointment at the Boys Town Down Syndrome Clinic Today.
https://www.boystownhospital.org/services/pediatric-neuroscience/down-syndrome-clinic​


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