PNW Mom
03-18-2001, 05:55 AM
Some years ago when my son was small, I put together "Welcoming Babies with Down Syndrome" to send to our local hospital maternity units. It was included at the Down Syndrome WWW page when the mom of a darling baby boy offered to put together a web page with contributions from the parents and professionals who read and contributed to the down-syn list serv or newsgroup. Something that families have told me over the years is how difficult it was for grandparents, aunts and uncles, cousins and other loved ones to get good information about DS when a baby was born into the family. So if you put together an information packet for hospitals to share with parents of new babies in your area, it would be good to add something for relatives.
I have had a wonderful time raising my 17 year old son. Because my OB/GYN had a 16 year old son with DS when my son was born, I had access to the most up to date information and some wonderful support when he was newborn. I wish I had believed more of what people had told me then!
Even now many of my son's accomplishments take me completely by surprise. You'd think by now I would not underestimate him at all, but my friends who have mainstream kids his age say that their sons are still surprising them, too.
The first year I had to take vacations from Down syndrome just about every day - I would just enjoy my baby without thinking about DS, getting all the cuddles and play and enjoyment I would have had if I was not worried about the diagnosis. That worked out great - it was something all parents of older kids with DS told me I should try to do.
Later on when he was in cub scouts, little league and all those other activities that seem like fun for children, I thought about all the physical therapy and speech therapy things we did when he was a baby - he has always had a busy schedule. I always tried to plan some free time in there so that we were not rushing through regular family life to get him someplace else.
When he was very small I dressed him in a hurry one morning to get him to physical therapy, and then his therapist undressed him to spend the hour teaching him how to put on his own clothes! He had been dressing himself for quite a while, except when I was in a hurry - it was hilarious to see him pretend that what his therapist was 'teaching' him was brand new. What a rascal!
We have had some rough times and some unusually great times, but mostly we have had an ordinary life, and that is something I sure didn't expect.
Good luck to you all!
PNW Mom - bb053atscn.org
SE of Seattle
Thoughts from the Middle of the Night http://www.our-kids.org/Archives/TFtMotN.html
Welcoming Babies with Down Syndrome http://www.nas.com/downsyn/donations.html
Children with Diabetes WWW page (DS) http://www.childrenwithdiabetes.com/d_03_193.htm
Children with Diabetes Information for Classmates http://www.childrenwithdiabetes.com/d_0q_421.htm
I have had a wonderful time raising my 17 year old son. Because my OB/GYN had a 16 year old son with DS when my son was born, I had access to the most up to date information and some wonderful support when he was newborn. I wish I had believed more of what people had told me then!
Even now many of my son's accomplishments take me completely by surprise. You'd think by now I would not underestimate him at all, but my friends who have mainstream kids his age say that their sons are still surprising them, too.
The first year I had to take vacations from Down syndrome just about every day - I would just enjoy my baby without thinking about DS, getting all the cuddles and play and enjoyment I would have had if I was not worried about the diagnosis. That worked out great - it was something all parents of older kids with DS told me I should try to do.
Later on when he was in cub scouts, little league and all those other activities that seem like fun for children, I thought about all the physical therapy and speech therapy things we did when he was a baby - he has always had a busy schedule. I always tried to plan some free time in there so that we were not rushing through regular family life to get him someplace else.
When he was very small I dressed him in a hurry one morning to get him to physical therapy, and then his therapist undressed him to spend the hour teaching him how to put on his own clothes! He had been dressing himself for quite a while, except when I was in a hurry - it was hilarious to see him pretend that what his therapist was 'teaching' him was brand new. What a rascal!
We have had some rough times and some unusually great times, but mostly we have had an ordinary life, and that is something I sure didn't expect.
Good luck to you all!
PNW Mom - bb053atscn.org
SE of Seattle
Thoughts from the Middle of the Night http://www.our-kids.org/Archives/TFtMotN.html
Welcoming Babies with Down Syndrome http://www.nas.com/downsyn/donations.html
Children with Diabetes WWW page (DS) http://www.childrenwithdiabetes.com/d_03_193.htm
Children with Diabetes Information for Classmates http://www.childrenwithdiabetes.com/d_0q_421.htm