This is a time of many big life changes! Your child will be entering jr. high school, beginning puberty, and gaining their first bit of independence. While some children continue with mainstream schooling in their junior and secondary schools, this is often the age at which a gap in development between a child with Down syndrome and other children starts to widen. For this reason some young people with Down syndrome choose to go into a more specialized education. As such, it’s crucial that they get the support they need as these changes occur since, if not addressed, it can have significant impacts on their physical and mental health, as well as on their ability to cope with change in the future. More opportunities to have some independence from the family and to explore their individuality should be encouraged. Young people may need more support to access social facilities, but once there, parents need to stay in the background.
- General physical and neurological examination (with reference to atlanto-axial dislocation).
- Cervical spine x-rays as needed – only for Special Olympic participation
- Monitor for obesity by plotting height for weight on the growth charts for typical children.
- Perform a careful cardiac exam in adolescents, looking for evidence of valvular disease. Or if symptomatic, Echocardiogram (if evidence of valvular disease on clinical exam.)
- Lab and consults: Thyroid function testing (TSH and T4) yearly.
- Hearing and vision evaluations every year.
- Continue speech/language therapy as needed.
- Continue twice-yearly dental exams.
- Pelvic exam if sexually active, only. Consult gynecologist experienced in working with individuals with developmental disabilities to address issues of sexuality and/or for pelvic examination for sexually active teenager.
- Testicular Exam for boys as increased risk of testicular CA in this population.
Adolescents with Down syndrome go through changes associated with puberty at the same time and in the same order as their peers. Sometimes their lack of emotional maturity makes this a very difficult time and they require plenty of information, support and guidance to help them through. Information about relationships and sex, appropriate and inappropriate behaviour, hygiene and bodily changes needs to be presented in an effective way that the young person will find easy to understand. Using drawings, pictures, books and videos will help illustrate concepts.
Canadian Down Syndrome Society (CDSS) - Mind and Body, Answers To Your Questions
Boyfriends & Girlfriends: A Guide to Dating for People with Disabilities (Amazon)
The Girls' Guide to Growing Up: the best-selling puberty guide for girls
The Boys' Guide to Growing Up: the best-selling puberty guide for boys
Information about keeping safe is important to ensure that individuals are not exploited or abused. Taken gradually, with plenty of opportunities for practice, young people will not face situations unprepared, and risks will be minimized. Review information from the safety resources in the childhood section of the map until your teen feels confident!
This is often the age at which a gap in development between a child with Down syndrome and other children starts to widen, and young people with Down syndrome will become aware that they possess some differences from the typical population. Help will be needed to understand what Down syndrome is and how it has affected their development. A positive self-image is very important, clothing and hairstyles should be up-to-date and age appropriate.
Dr. Adedamola Babajide Orimalade - Psychiatrist
Raising Children Network - Mental Health For Children With Disabilities
Mental Health Learning & Leadership Community (MYLLOC) - University of Wisconsin
Mental Health First Aid - Resources
Vita Newsletter: Let's Talk About Mental Health and Developmental Disabilities
Note: Although symptoms of many mental health conditions usually manifest in adolescence and require early intervention, these resources can be utilized throughout life.
Government ID
- Get a ID Card at any Registry office
Get a government ID card | Alberta.ca
Bank Account
- Open a bank account for your child
PDD (Persons with Developmental Disabilities) - PDD helps adults with developmental disabilities to live as independently as possible in their community.
- Begin eligibility & capacity assessment between ages 15–16.
PDD – Eligibility | Alberta.ca
PDD – Supports and services | Alberta.ca
PDD Policy Manual | Alberta.ca
Easter Seals offers workshops held by experienced Resource Coordinators to help new applicants understand, access, and manage PPD funding and services.
AISH (Assured Income for the Severely Handicapped) - Financial and health benefits for eligible Albertans with a permanent medical condition that prevents them from earning a living.
- Apply at 16.5 years
Assured Income for the Severely Handicapped (AISH) | Alberta.ca
- Begin transition planning (age 16). Consider enrolment AISH, PDD
- Continue dietary and exercise recommendations (see childhood, above).
- SBE prophylaxis needed for individuals with cardiac disease.
- Discuss estate planning and custody arrangements.
- Encourage social and recreational programs with friends.
- Discuss plans for alternative long term living arrangements such as community living arrangements (CLA).
- Reinforce the importance of good self-care skills (grooming, dressing, and money handling skills).