A Parent's List for a Child with Down Syndrome

When my daughter was first born, I obsessively compiled basic medical notes about Down Syndrome and have followed them and will continue for much longer. I have since learned about individuality, but it helped control one of my many new fears.

I hope this helps you too.

1. After the diagnoses, get an assessment done at 4 months old and every 6 months after that.
2. Get routine health checks
3. Thyroid blood tests should be done at birth, 6 months, 1 year old and annually after that. This will prevent hypothyroidism.
4. Vision tests should be done annually as soon as you can get the first appointment.
5. Hearing tests should be done every 2 years from 3-13 years old.
6. Dental tests are done annually from 2 years; x-rays should be taken at ¾ years old and 10 years.
7. At 3 and 10 years, get a cervient spine x-ray to rule out atlantoaxial instability.
8. Generally, your child’s total caloric intake should be below the recommended daily allowance for children of the similar height and age.

12-18 years old

• Check hearing and vision every other year
• Possibility of obstructive airway disease and sleep apnea
• If sexually active, get pelvic exam
• Thyroid function testing yearly
• Cervical spine x-ray at 12 years and 18 years
• At age 16 years get a dental exam done twice yearly
• Update estate planning and custody arrangement

18-20 years old

• Get an echocardiogram once to evaluate for valvular disease
• Pap smears should be done every 1-3 years following age of 1st intercourse
• Breast exam should be done yearly by a physician
• Get a gynaecologist with experience with special needs
• Have annual thyroid exams
• Ophthalmologist should look for keratinocomus and cataracts
• Auditory testing should be done every 2 years
• Twice yearly dental visits
• Mammograms every number of years (ask your physician)
• Update estate planning and custody arrangements

Milestones

If no other issues are a hindrance, he/she should:

                                 Down Syndrome Child         Regular Child

• sits alone                 6-30 months                        5-9 months
• crawls                     8-22 months                        6-12 months
• stands                     1-3 ¼ years                         8-17 months
• walks alone             1-4 years                             9-18 months
• first word                1-4 years                             8-23 months
• first phrase              2-7 ½ years                         15-32 months
• smile                       1 ½-5 months                      1-3 months
• finger feeds             10-24 months                      7-14 months
• drinks from cup      12-32 months                       9-17 months
• uses spoon             13-39 months                      12-20 months
• bowl control           2-7 years                             16-42 months
• dresses self             3 ½-8 ¼ years                     3 ¼-5 years

Erika Tencer is co-founder of Empowerment - A Special Needs Network and a therapeutic recreation specialist. She can be reached at 1.514.603.4446.

Dr. Eric Fombonne, director of the Montreal Children's Hospital (MCH) Autism Spectrum Disorders (ASD) Clinic, along with twelve other prestigious universities, is proud to embark on an ambitious project to investigate the genetic causes of ASD.

This project is unique for two primary reasons:

· The project comes at an exciting time in history. Recent scientific breakthroughs in genetics and neuroscience now make it possible to better understand the genetics of autism.

· It involves “simplex” families who have not been studied extensively. Simplex families have one child who has ASD, one or more children who do not have ASD, and two biological parents.

You and your family may want to participate in this important international research collaboration.

Participation in this project requires the completion of a number of questionnaires, interviews, and clinic visits, as well as the donation of DNA. Every member in your family will be asked to give a small amount of blood. Fragile-x and karyotype testing could be done at the same time. You will receive a comprehensive research evaluation, including psychology testing, as well as a report for your child once your family completes the study.

Your participation in this research is completely voluntary. Current and future services will not be altered if you do not participate in this study. You can also leave the study at any time without affecting the services that you normally receive.

If you believe that this research may interest you and your family, or if you would like further information, please contact the Project Coordinator, Cara Schwartz, at 514-412-4400 ext. 23325, or by email at cara.schwartz@muhc.mcgill.ca.

Peering Into a Mind That’s ‘Different, but Not Less’

In her autobiography, “Thinking in Pictures: My Life With Autism,” Temple Grandin explains that she values “positive, measurable results more than emotion.” The HBO movie “Temple Grandin” honors its heroine’s priorities, stressing deeds over tearful setbacks and joyous breakthroughs.

That restraint, unusual in a portrait of a person who heroically overcomes a handicap, is oddly captivating and makes the story all the more touching. “Temple Grandin,” which has its debut on Saturday and stars Claire Danes in the title role, is a made-for-television biopic that avoids the mawkish clichés of the genre without draining the narrative of color and feeling.

Read the rest of the article here:
http://www.nytimes.com/2010/02/05/arts/television/05grandin.html?emc=eta1

Claire Danes plays the title role in the biopic “Temple Grandin,” which has its debut this Saturday night at 8, Eastern and Pacific times; 7, Central time on HBO.