Changes to Routine for Families Raising Kids with Down Syndrome

Understanding Down Syndrome's Effects on Daily Living

Receiving a Down syndrome diagnosis for your child profoundly impacts a family's expectations and plans for the future. While raising a child with Down syndrome can present unique challenges, many of those differences center around changes to daily routines and activities.

Learning and Developmental Delays

Children with Down syndrome typically face delays in cognitive, speech/language, and motor development. They reach milestones like walking, talking, reading, writing, counting, etc. later than their peers without Down syndrome. Therapies and early intervention services help foster development, but parents must adapt their schedule and activities to accommodate their child's pace and unique needs.

For example, potty training generally takes longer. Children with Down syndrome may start later and need more consistency and positive reinforcement over a longer period. Parents should allocate more time for this milestone and work closely with therapists to determine the best strategies for their child.

Medical Care and Health Precautions

A number of health issues occur more frequently with Down syndrome. Therefore, numerous medical appointments tend to fill the family calendar. Babies often struggle with eating, so feeding therapy starts early. Annual check-ups monitor vision, hearing, thyroid, atlantoaxial instability, sleep apnea, and leukemia risk. If concerns arise, further medical consults and therapy referrals follow.

Parents must also learn how to spot signs of common illnesses since their child may not communicate symptoms well or at all. Preventative measures like flu shots and COVID vaccines require scheduling too. Families spend more time interacting with healthcare providers managing these increased needs.

Education Planning

School days for students with Down syndrome frequently include specialized instruction and related services like speech, occupational (OT), and/or physical (PT) therapies. Depending on the child's needs, they may split time between general and special education classrooms. Annual meetings for an Individualized Education Program (IEP) also dot the calendar to review progress and set updated goals.

Some families choose home or private schooling if they feel public options lack proper support. Regardless of setting, parents devote many hours researching programs, attending meetings, shuttling to therapies, and supplementing learning at home. These efforts continue from preschool through transition planning for post-secondary options.

Financial and Legal Preparations

Families raising a child with Down syndrome often face loss of income due to reduced work hours or leaving employment altogether. Therapies, medications, specialized equipment and care bring significant costs - despite health insurance. Furthermore, parents invest time establishing special needs trusts, ABLE accounts, and guardianship arrangements to financially provide for their child long-term.

Updating legal documents like wills and estate plans also takes on new urgency with a special needs child. Grandparents and extended family members may need to alter their own estate planning. Therefore, parents devote considerable effort getting ducks in a row for their child's future safety and well-being.

Accessing Community Resources

Parents spend time locating and connecting with local and national Down syndrome associations. These groups provide helpful programs, networks, and resources for families. Support groups allow parents, siblings, and people with Down syndrome to share information and experiences. Playgroups, camps, dances, buddy walks etc. also facilitate fun peer interactions.

Other community ties like churches, activity groups, and sports leagues give social opportunities too. Parents put in work finding welcoming programs and accompanying their child to promote inclusion. Accessing resources reduces isolation and builds essential social skills over time.

Emphasizing Life Skills

Parents devote great effort nurturing self-care and domestic skills in children with Down syndrome to increase their independence. Personal hygiene, dressing, preparing meals, cleaning up, doing laundry, and using public transportation all require extra teaching and practice. Parents must intentionally carve out additional time daily focusing on these life skills.

For example, a simple hygiene routine like brushing teeth takes much longer learning the proper technique and sequence of steps. Children do best breaking tasks down into manageable chunks and solidifying one piece before tackling another. This measured pace and high parent engagement continues through elementary school and beyond.

Embracing a "New Normal"

Clearly, Down syndrome necessitates adaptations to regular routines like medical care, schooling, financial planning, social connections etc. While every child and family situation differs, nearly all face more demands on their time. Parents often feel overwhelmed, particularly right after diagnosis. With support, most adjust expectations and priorities to access the resources their child requires.

Over the years, a "new normal" emerges with its own schedules, activities, and rhythms.Daily life, while still filled with extra appointments and diligent skill-building, becomesPatterns develop around providing opportunitiesfor the best possible development and inclusion. Eventually, earlier feelings of shock and loss evolve into love and pride watching children grow into adults ready to shine their light on the world.

Disclaimer: This article is for informational purposes only and does not constitute medical advice. Always consult with a healthcare professional before starting any new treatment regimen.