(Closed) Anyone raising a child with Down Syndrome?

posted 5 years ago in Parenting
Post # 3
850 posts
Busy bee
  • Wedding: June 2013

@aliciapdx:  I do not have a child with a disability, but I work with families who do. From my work, I know that the National Down Syndrome Society is a wonderful group, with over 350 chapters across the country. They could connect you to people in your area who are raising kids with DS. http://www.ndss.org/Resources/Local-Support/

Post # 5
7408 posts
Busy Beekeeper
  • Wedding: October 2010

I don’t have any personal experience, but I just wanted to offer you support.  Hard decisions lie ahead and you will need all the good thoughts coming your way that you can get!

Post # 6
2196 posts
Buzzing bee
  • Wedding: June 2011

My godson has downs, and my girlfriend (his mom) is very open about her journey raising him. She did not know he had downs before giving birth to him (very early, at 31weeks) and has a wonderful and realistic perspective on his life so far, and what to expect in the immediate and distant future. 

If you’d like, I can PM you her info/email address. She loves helping others and has a support group in her neck of the woods in Ontario for parents of kids with Downs. If you are interested please let me know, she is wonderful to talk to and does not sugar coat anything or try to pull the wool over your eyes about what to expect and what they have gone throguh so far. Her little guy is 2 years old and is the sweetest little thing, but they have certainly gone through their trials and tribulations.

Post # 8
141 posts
Blushing bee
  • Wedding: June 2017

I don’t have a child with Downs, but I work with adults that do. Feel free to PM me with any questions! I’m not sure about children, but I have a lot of experience with varying degrees of functioning in their adult lives. 

Post # 9
2250 posts
Buzzing bee
  • Wedding: August 2010

My younger brother has Downs, and he is amazing! I will not tell you that it is easy, because I have watched my parents struggle with many things (education was a big one…. it seemed like they were in a constant battle to provide him with equal opportunity in school), but he is such a cool, loving, friendly and hilarious young man. We are lucky to have him!

Post # 10
9142 posts
Buzzing Beekeeper
  • Wedding: November 2013 - St. Augustine Beach, FL

@aliciapdx:  Thankfully there are TONS of resources available!  It’s smart to be prepared for whatever the outcome is.

Families Exploring Down Syndrome is an organization of parents, professionals, and persons concerned about the welfare of individuals with Down syndrome. – http://www.familiesexploringdownsyndrome.org/

National Down Syndrome Congress info for new/expectant parents – http://ndsccenter.org/resources/new-and-expectant-parents/

Michigan Special Care Guide for Children with Special Needs – http://www.michigan.gov/documents/mdch/1-21_SpecialCareGuide_203487_7.pdf

Post # 11
9142 posts
Buzzing Beekeeper
  • Wedding: November 2013 - St. Augustine Beach, FL

Since I work with CPS I come into contact with lots of special needs children and adults.  The biggest issue I see is making sure you have plans in place for your child should something happen to you.  Unfortunately, a lot of families fail to put in place long term care plans that address whom will care for the child when the parents die.  Other than that the families I deal with seem happy and fulfilled with their special needs family member.  Persons with Downs can be very high or very low functioning and generally the more educated and involved the parents are, the better the outcomes.

Post # 12
1326 posts
Bumble bee
  • Wedding: July 2013

I have a very special young woman in my life with Down Syndrome. She just turned 18 and is one of the lights of my life!! She has had many health problems (very healthy now) and is such a positive fighter. She inspires everyone!!


Post # 13
117 posts
Blushing bee
  • Wedding: September 2014

@aliciapdx:  Check out this woman’s blog. She has a 3.5 year old daughter with downs syndrom and she just posted an update on their progress with their daughter’s disability. I also put the link for her birth story which is so touching. Give it a read!

Her most recent story: 


Her birth story: 


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