Table of Contents
Phase
Dominant Issues
Additional Concerns
Early Childhood (birth to age 5)
- 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 diagnose 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
- 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?
Elementary school years (age 5 – 14)
- 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
- 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
Secondary school years (age 14 – 21)
- 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
- 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?
Early adulthood (age 21 – 30)
- 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
- 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?
Later adulthood (age 30 – 50)
- 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
- 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
Advanced age (50, plus)
- 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
- 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?
