Table of Contents
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
Dominant Issues
Additional Concerns
Phase:
Early Childhood (birth to age 5)
Dominant Issues:
Emotional and practical adjustment to new family member with Down syndrome
Parents need to educate themselves, other family members on Down syndrome issues
Child’s Health – numerous tests and visits to doctors to diagnosis and address immediate health issues
Therapies for child – identifying and securing early intervention support from speech pathologists, physiotherapists and occupational therapists as needed and as available
Identifying and accessing appropriate childcare, nursery school options
Parents need to educate themselves, other family members on Down syndrome issues
Child’s Health – numerous tests and visits to doctors to diagnosis and address immediate health issues
Therapies for child – identifying and securing early intervention support from speech pathologists, physiotherapists and occupational therapists as needed and as available
Identifying and accessing appropriate childcare, 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?
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 Issues:
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, programme, bus driver, classmates
Communicating with teachers, support staff and specialists
Discerning how to access supports, 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
Child must get to know and cooperate with personal support workers, tutors, as appropriate
Child must navigate educational transitions: changes of grade, teacher, educational support worker, programme, bus driver, classmates
Communicating with teachers, support staff and specialists
Discerning how to access supports, 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
Child must get to know and cooperate with personal support workers, 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 programmes and opportunities for the child
Balancing the requirements of the child with Down syndrome with siblings’ needs, parental work responsibilities
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 programmes 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 Issues:
Child must manage change from elementary to secondary system, and different school culture and routines
Continuing communication with school, changing cast of teachers, educational support workers, bus drivers, etc.
Supporting young person to maintain health, weight and fitness
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, i.e., part-time jobs, Special Olympics, volunteer opportunities
Young person must get to know changing slate of personal support workers, tutors, as appropriate
Forward planning for after-secondary school opportunities
Applying for provincial disability support payments after age 18
Continuing communication with school, changing cast of teachers, educational support workers, bus drivers, etc.
Supporting young person to maintain health, weight and fitness
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, i.e., part-time jobs, Special Olympics, volunteer opportunities
Young person must get to know changing slate of personal support workers, tutors, as appropriate
Forward planning for after-secondary school opportunities
Applying for provincial disability support payments after age 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 programmes 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 young person to recreation and other opportunities with needs of rest of family and parents’ need to work and relax
Should parents put young person on a waitlist for appropriate adult care and housing opportunities?
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 programmes 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 young person to recreation and other opportunities with needs of rest of family and parents’ need to work and relax
Should parents put young person on a waitlist for appropriate adult care and housing opportunities?
Phase:
Early adulthood (age 21 – 30)
Dominant Issues:
Identifying, applying and enrolling young person in appropriate post-secondary educational, training, job and volunteer opportunities; 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 young person to maintain health, nutrition, weight and fitness
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 decline in required daily activities
Investigating, planning for and implementing plans for moving out of parental home into alternate housing
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 young person to maintain health, nutrition, weight and fitness
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 decline in required daily activities
Investigating, planning for and implementing plans for moving out of 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 parents are still working?
Staying informed about relevant programmes and opportunities for the young person
Sustaining motivation for seeking out new opportunities
Dealing with changes in 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?
Who can check in on them or keep them company if parents are still working?
Staying informed about relevant programmes and opportunities for the young person
Sustaining motivation for seeking out new opportunities
Dealing with changes in 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 Issues:
Continuing to support person with Down syndrome to investigate, compare options and plan for move from parental home
Person with Down syndrome must deal with inevitable changes in jobs, volunteer opportunities, sports and social activities, find alternatives when necessary
Monitoring person’s health, nutrition, weight and fitness, liaising with professionals; supporting them through initial Alzheimer’s testing, possible treatment
Identify 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
Person with Down syndrome will deal with grief from loss of loved ones
Person with Down syndrome must deal with inevitable changes in jobs, volunteer opportunities, sports and social activities, find alternatives when necessary
Monitoring person’s health, nutrition, weight and fitness, liaising with professionals; supporting them through initial Alzheimer’s testing, possible treatment
Identify 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
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 person’s behaviour patterns and habits that may become rigid over time
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 person’s behaviour patterns and habits that may become rigid over time
Phase:
Advanced age (50, plus)
Dominant Issues:
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, communication decline
Monitoring ongoing issues associated with housing, health care, personal safety, other supports
Supporting person with Down syndrome, protecting them from neglect or abuse
Need for specialized care and supervision of the person with Down syndrome as memory, communication decline
Monitoring ongoing issues associated with housing, health care, personal safety, other supports
Supporting 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?
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?
