Learn more about CFSS in Minnesota
Caring for a child with Down Syndrome, whether you are a parent or a family caregiver, has special challenges and rewards. This genetic condition can present a wide range of physical and cognitive delays, so every child, family, and caregiver will have their own set of circumstances.
The following six tips offer a broad overview for how to take care of a child living with Down Syndrome.
Early Intervention Programs are offered through state and county health or education departments. These programs are designed to help your child develop social, language, and emotional skills. They can include specialized therapies—such as physical therapy, occupational therapy, and speech therapy—and will stem from an Individualized Family Service Plan (IFSP) as mandated by the Disabilities Education Act (IDEA).
The IFSP guides the state on services available to your child. It even includes free resources for parents and siblings.
Learning a new skill may take a little longer for an individual with Down Syndrome. It’s important to get comfortable with slowing down and having an extra amount of patience.
However, your child or client can still be a kid! For example, break household chores up into small steps and teach them, step by step, how to complete them. Build time into your day to read, play, and spend time outdoors. Children with Down Syndrome enjoy many of the same activities as children without special needs, such as athletics, music, crafts, and other hobbies.
When your child is ready for school, you will work with educators on developing an Individualized Educational Program (IEP). Family caregivers or personal care assistants (PCAs) must be ready to advocate for a child with Down Syndrome, as special accommodations will most likely need to be made so the child can succeed in education.
In developing an IEP, your child’s learning style will be assessed so that classroom expectations can be adjusted to meet your child’s needs.
A child with Down Syndrome will benefit from a consistent daily and weekly routine. Keep routines simple and practice patience—once again!—as you teach your child to transition from task to task. Younger children may benefit from pictures and songs to support their routines. These habits will help children feel a sense of control over their lives.
Within the structure of routines and rules, it’s important for a child to have freedoms. Let your child with Down Syndrome make his/her own choices, when appropriate, for example, allow your child to choose which clothes to wear. If your child encounters a problem or challenge at school or with friends, support him/her in coming up with solutions but allow your child to solve the problem independently. This will help your child build resiliency and independence.
Not every individual with Down Syndrome will have health problems, but many do. About 50% will have a congenital heart defect and many have an increased risk of developing pulmonary hypertension. About half will have hearing and/or vision problems, too.
With correct diagnostics and regular medical care, these health risks can often be managed.
Caring for a child with Down Syndrome can be overwhelming. Many caregivers gain confidence and find community by joining a support group.
To find support groups in your area, contact the National Association for Down Syndrome or the National Down Syndrome Society.
Caring for a child with Down Syndrome does not need to be something you do alone. For more information about home care services, contact Best Care. Our teams can provide you with valuable home care ad PCA resources to help you provide the best home care possible.
