Post # 1
I will keep myown story brief, but some of the general info is here and nothing is set in stone right now since I will be having more testing done this week (I hope soon.) We discussed the decision we would make before I got pregnant, but now it’s becoming harder to think about the way we were planning on leaning being I am 18 weeks along. I don’t know anyone who has a child with Down Syndrome and of course know that there are different levels of functioning.
Essentially what I am asking for from the bee is some information what it is like to have a child with Down Syndrome? How is your life different? What does your days look like? What kinds of issues does your child have? If you have other children, how is rasing this child different? What costs do you incur in seeing specialists or other needed interventions? Are you able to return to work or does your child need one-on-one care all the time? Is your child able to attend daycare?
I hope these questions are worded in a very sensitive manner and in no way do I mean to insult anybody, so I apologize since I understand the personal nature of everyone’s experiences. We have only really looked at one side of the fence and I think we need look at both sides in order to make a healthy decision for the entire family.
If someone prefers you can DM me.
Post # 3
@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 # 4
@remijp: Thanks, I will probably send them an e-mail later.
Post # 5
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
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 # 7
@StaceyA: Yes, please, I can give you my e-mail in a PM. I am nervous to contact agencies because I feel like people won’t be honest and of course tell me how wonderful their live is, how grateful they are, how they could never… Thanks!
Post # 8
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
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
- 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
- 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
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
@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: