Life Phases of People with Down syndrome

Everyone experiences joys and challenges as their lives progress, and people with Down syndrome are no different. The following chart shows what people with Down syndrome and their families and friends may be concerned about and working towards, during each of their significant life phases.

 

 

Phase: Early Childhood (birth to age 5)

Dominant Challenges

- Emotional and practical adjustment to a new family member with Down syndrome

- Parents need to educate themselves and other family members on Down syndrome issues

- Child’s Health – numerous tests and visits to doctors to diagnose and address immediate health issues

- Therapies for a child – identifying and securing early intervention support from speech pathologists, physiotherapists, and occupational therapists as needed and as available

- Identifying and accessing appropriate childcare, and nursery school options

 

Additional Concerns

- Are surgeries and/or hospital stays required? How to manage the stress and disruption to normal life?

- Does the child have special feeding routines or diet requirements?

- How can parents get away from work for numerous appointments?

- Is there a local Down Syndrome Association support group?

 

Phase: Elementary school years (age 5 – 14)

Dominant Challenges

- Selecting appropriate school and understanding how to interact with the school system (IPRCs, IEPs, report cards)

- Child must navigate educational transitions: changes of grade, teacher, educational support worker, programs, bus driver, classmates

- Communicating with teachers, support staff, and specialists

- Discerning how to access support, what workplace insurance plans cover

- Child experiments with new environments: community recreation options, summer camps, sports, etc.

- Applying for provincial disability support payments, federal Disability Tax Credits

- The child must get to know and cooperate with personal support workers, and tutors, as appropriate

 

Additional Concerns

- Is the child learning at school and socially integrated?

- How to learn which systems provide which supports? i.e., does the educational system provide speech and language therapy? For how long? Which issues are addressed?

- How to communicate with, and solve problems in, multiple scenarios: school, therapies, recreation, respite, etc.

- Staying informed about relevant programs and opportunities for the child

- Balancing the requirements of the child with Down syndrome with siblings’ needs, parental work responsibilities

 

Phase: Secondary school years (age 14 – 21)

Dominant Challenges 

- Child must manage change from elementary to secondary system, and different school culture and routines

- Continuing communication with the school, changing cast of teachers, educational support workers, bus drivers, etc.

- Supporting a young person to maintain health, weight, and fitness

- A young person may require support to continue friendships and relationships as differences between students’ experiences become more apparent

- Young person navigates multiple unique high school experiences (co-op placements, school dances and proms, sports and extracurriculars)

- Identifying and accessing out-of-school opportunities, eg., part-time jobs, Special Olympics, volunteer opportunities

- A young person must get to know the changing slate of personal support workers, and tutors, as appropriate  

- Forward planning for after-secondary school opportunities

- Applying for provincial disability support payments after the age of 18

 

Additional Concerns

- How to do ongoing problem-solving in multiple scenarios: school, therapies, recreation, respite, etc.

- How to develop independence skills at home and in other contexts, i.e., helping with meal preparation, using a cellphone, operating safely on the internet, opening a bank account, using bus system

- Staying informed about relevant programs and opportunities for the young person

- Managing adolescence and the onset of puberty, relationships with friends and potential partners

- Balancing the need to drive and accompany a young person to recreation and other opportunities with the needs of the rest of the family and parents' need to work and relax

- Should parents put their young person on a waitlist for appropriate adult care and housing opportunities?

 

Phase: Early adulthood (age 21 – 30)

Dominant Challenges

- Identifying, applying, and enrolling the young person in appropriate post-secondary educational, training, job, and volunteer opportunities; the young person may have to apply, prepare for, and pass interview

- Young person and family manage patchwork schedule of activities and transportation to daily activities

- Young person learns skills for independent visits to family members, respite opportunities, travel

- Supporting a young person to maintain health, nutrition, weight, and fitness

- A young person must master safe-at-home skills and independence in the community

- Continuing training in self-care, i.e., personal grooming, laundry, cooking, house cleaning and laundry

- Coping with possible boredom and isolation that might accompany a decline in required daily activities

- Investigating, planning for, and implementing plans for moving out of the parental home into alternate housing

 

Additional Concerns

- What will the young person do all day?

- Who can check in on them or keep them company if their parents are still working?

- Staying informed about relevant programs and opportunities for the young person

- Sustaining motivation for seeking out new opportunities

- Dealing with changes in a young person’s mood, personality, and interests that sometimes accompany changes in routine, socialization

- Would it help to form a group with other parents, to plan together for the future of your young people with Down syndrome?

 

Phase: Later adulthood (age 30 – 50)

Dominant Challenges

- Continuing to support person with Down syndrome to investigate, compare options and plan for move from parental home

- A person with Down syndrome must deal with inevitable changes in jobs, volunteer opportunities, sports, and social activities, find alternatives when necessary

- Monitoring a person’s health, nutrition, weight, and fitness, liaising with professionals; supporting them through initial Alzheimer’s testing, possible treatment

- Identify a Circle of Friends or some other option for ongoing care and management of the person’s affairs

- Ensuring that the person with Down syndrome has enough money to afford care and recreation

- Passing responsibility for vigilance in caring and monitoring of the person with Down syndrome from parents/guardians to siblings or other caregivers

- A person with Down syndrome will deal with grief from loss of loved ones

 

Additional Concerns

- There are inadequate independent or supervised housing alternatives for people with Down syndrome. Where will the new ideas and funding come from?

- The system for supporting people with Down syndrome can be bewildering to navigate.  

- How to maintain a “growth mindset” as a person with Down syndrome or the parent/guardian of a person with Down syndrome?

- How to continue to seek out opportunities for learning and change, even as the person ages?

- Coping with a person’s behavior patterns and habits that may become rigid over time

 

Phase: Advanced age (50, plus)

Dominant Challenges

- Staying vigilant to new developments and possibilities for recreation, therapy and stimulation of people with Down syndrome as they age

- Need for specialized care and supervision of the person with Down syndrome as memory, and communication decline

- Monitoring ongoing issues associated with housing, health care, personal safety, and other supports

- Supporting a person with Down syndrome, protecting them from neglect or abuse

 

Additional Concerns

- How will the preferences of the person with Down syndrome be elicited as their communication ability deteriorates?

- Who will maintain the health records and medical appointment schedule of the person with Down syndrome?  

- Who has the power to support them as they make medical and other decisions?

- Who will ensure that the end-of-life wishes of the person with Down syndrome are respected?