Technicality
This is a little technicality, but since I was made aware of it, I like to make others aware of it also. I used to say it this way, until a friend of mine made me more aware. Our children have Down syndrome. They are not Downs kids or Downs babies. This is something they have, not are. They are children first.
You would not call a child with cancer, a cancer baby or a cancer kid. The same applies for our children. They are not a Downs baby or a Downs kid. They have Down syndrome. They are not Down syndrome. The child comes first. Teddy is my son. A beautiful 4 year old who has Down syndrome.
The more we can use correct language, the more we can change the attitude that people have toward our children. We want others to see our children for who they are first. We should talk about them in this way.
taylor
I really love hope you expreesed this. I am a 17 year old female. I am in child development and i really enjoyed your page it helpped out alot. I had to type a paper on DS. Thanks
Charlene Becker
I agree with you 100%! I took my baby with me to a Baby Shower and this woman came up to me and said, “I have one of those”… I said “excuse me?”, I had no idea what she was talking about and she repeated herself..”I have one of those” and I said, “one of what?” and she replied “a downs”… I was devistated!!!! I just turned around without saying a word and went home… hugging and kissing my baby the entire way! He’s my son, an innocent human being who deserves to be loved and treated like one.
Christine Temple
I love my daughter so much, the sweetness of her smile, the gentle caress of her small hand on my chin, and the look of love she eminates when she sees me. This is who I see, a wonderful person with a unique set of circumstances in her body. My baby has Down’s Syndrome, but it will never be who she is. I love you always my Baby Angel.
Isaiah
I completely agree, thank you for sharing!
Mariah Pope
That I agree with 100%. I used to tell my husband not to tell anyone who would come up and say hello to Sean(our baby), that he has down syndrome. Not because I am ashamed of it, but I am interested to see, if other people can notice it. Occasionally, I’d see a down syndrome look on him, but most of the time, I can’t. He is very active, and curious about almost anything that catches his fancy. He turned 6 months just yesterday.
And yes, he has down syndrome, but it did not keep him from being a child first as you stated.
May Morales
Hi!
Our second son Lucas has down syndrome. I thought I am just biased but when I read Mariah’s comment, I guess it really is true. When I look at my baby, I see him as a baby. Yes, there are times when I see the physical features of a baby with the syndrome but most of the time, he is my super observant boy with a ready smile for anyone who approaches him. He is 6 1/2 months now.
Sandy
We are gratful to be sharing our son with others who repsect one another.we are all human beings who needs to be treated equal!
samy36
Congratulations to all you parents of a new baby with down syndrome!!!!!!!!!I can tell you from my personal experience that your baby can and will develop into a really UP;; person,especially if you stay on the UP;;side of down syndrome.there will be many times that you will have the satisfaction of hearing your child say my favorite expression;;;I LOVE MY LIFE!!!!
Justin
How are you? Haven’t spoken with you in awhile..What’s new?
Kelly Meador
As all of you have said, I completely agree. The same goes for Autism. A child has Autism. They are not autistic. My best friend gave birth to her second boy last October and he was diagnosed with Downs Syndrome. He is the love of my life (I am his mother with out having to do the whole birthing thing..heh). He has truly changed my life for the better and is surrounded by so much love. He has an older brother who is just 1 year and 9 days older (18months and 6 months) and a new sister or brother will be born in November! I am so lucky to have them in my life. Thanks for letting me profess my feelings for them
Justin
Thank you.
Justin
Thank you.
Justin
samira
my son today make 4 step.yeaaaaaaaa.im so so happy.hi is 31 months old.
Justin
WOOOHOOO … this is a little old…but birthdays are great milestones…congrats!
mike hoffman
I wish all parents of children with differnt abilities all the best.
We have to remember that they are children first. They are not downs kids, they do not “suffer ” from or afflicted with down syndrome. They are children just like our other children and they will do the things that typically developing children will do. It will take a little longer or they may need a little help. Lets give our children the same opportunities that their typical peers have and give them the supports so that we can help them to be succesfull and included in their communities.
I truly wish all of you nothing but the best!
Keep it positive
Mike
Toni Capriotero
Hi everyone I’d like to tell you about my brother Scott.When Scott was born 4/4/73 the Drs. told us he would not make it through the night,this was the hardest thing to prepare for.The next day came,so did the next week,the next month.Drs.then told us he wouldn’t make it to 5yrs.Scott did pass but not until he was 31.We were told the best thing to do would be to have Scott institutionalized because he would need special care.We never entertained this idea for one second,he belonged to us and with us. I have never known a purer loving soul,Never.He was so full of love,life and kindness he had the greatest sense of humor.Scott was larger then life everyone who knew him loved him.He had the greatist memory and always help us when ours failed us.He loved to dance and sing and enjoyed being around people,if he met you once he never forgot you.These children ARE a blessing a blessing you will have for a life time.Treasure them always…
Justin
Thank you for sharing. This is sage advice and is truly appreciated. Thoughts for Scott.
Justin
Veronica Perez
Thanks for the info. My family is still fairly new to the experience and we were not aware of the correct terminology to use when describing our son. However now when asked we will say our son who is now 3 months old HAS down syndrome.
Justin
How’s it going? Just curious how things are progressing since you last dropped by?
Justin
fre3rich
my little girl has ds, she is the best thing that ever happened to me, though so are my other kids, i see so much for her. however, we also worry with a little that because she loves people always saying hi even to the ones who are rude and ignore her like she does not exist, what do we tell about the ones who look like everyone else but do not have her best interests at heart. the world is a great place for us but how do we not worry just alittle about our kids who think there is only all good out there.
fre3rich
i was also looking for tips on potty training and how many of your children have had to have ear tubes and sinus eye surgery to help keep the ear, sinus, eye infections away, my daughter gets one of these infections a month, she will go to her ent in a week, just wondering waht to expect?
DDD
i am a father of a downsyndrome child this is our first child now he is 6 months old we have consulted with a Dr. and was told that he case is very mild one , he has achieved almost all his milestones , we would like to know some tips which help our child
Susan Mateo
hi all, I haven’t been on in a while–but hope I can help some folks with info. My daughter Valerie will be 14 in August. I found out she would have DS 5 months into my pregnancy with her. I received a great book from my horrible geneticist (God does have a sense of humor!!). The book is called: Parents of Babies with Down Syndrome. It is an awesome book on what to expect in all areas of development and each chapter ends with short reflections by parents of their experiences–positive and negative. As for teaching them about safety–as they grow–point out the good gyus/bad guys in shows/movies they watch. Tell them sometimes bad guys dress up like good guys, so don’t go with anyone unless mom/dad/brother/sister say ok. Always make it a nonbendable rule they never go anywhere alone. limit hugs etc to safe people as soon as they can understand (Val was about 11 when we started that–as she began developing physically). As far as the surgeries–all the kids are different..Val has a lazy eye that is corrected with glasses–no surgery. She’s had ear tubes 3 times. She’s had tonsils and adenoids removed. But not all kids need all that..some need more. Same as kids who don’t have DS. Mostly just let them be themselves. Val is almost always sweet and friendly, but since we have begun the teens–PMS is some rough terrain–she gets REALLY cranky and mean. so, we warn teachers and limit outside interaction those few days.
hope that helps!!
Justin
How are you doing? This is one of the best comments on this site. Thank you so much for sending a thoughtful message to a clearly confused visitor. Would like to see more of you on the site. If possible, maybe start a group about “resources for parents with children that have down syndrome?” Anyway, would like for you to impart some more of you knowledge on the very large number of users that come here everyday looking for help, answers, guidance, and comforting.
Justin
Georgia
Hi maggie, im new at this, so i would like to learn more, i want to be a good grandparent, like what is the proper word for my grandchild, when someone ask why is his eyes oval is he ?, i usally say he has chrom 21, then i become very defensive. i just need someone out there to help me understand why people act this way.
amyjo
I agree with you 100%. In reality though, I think our society is ignorant. I found that out first hand. When we found out that our son had DS (4 months into pregnancy), it didn’t matter to me, he was still my son. I was proud to tell everyone that he would be born with DS. The responses that I recieved were “I’ve heard those kids are very loving” That bothered me, why was my child being labeled as “those kids”, he is a normal child just like everyone else. Sure he might have some delays, but he is just like everyone else. I think our society is so quick to judge and label someone.
Zoe
I couldn’t agree more that is one of my pet hates I have and would never label my daughter this way and I do not like to read this when people say ds kids or ds adults I always say my daughter has DS also the ‘they’re so loving thing’ is a defense mechanism when people don’t know what to say thats the first thing which springs to there mind as this is what society says when you say your wee one has ds the people who say this are just responding how they have seen/heard other people in there lives respond its learned behaviour so I try not to let that one bother me too much its better than awkward silence I think. However I find the more open I am about it the better people are educated and they are now asking me about the condition which is a far better scenario in my book.
Justin
I totally agree. This is immensely frustrating but is a reality that we live in…All we can do is to take one chop at a time…eventually we will collectively cut down that tree (hate this analogy
)…Let’s stay positive Zoe..
Btw, would love for you to come back and share some more info about your kiddo as well as upload some photos and maybe start a blog.
Take care,
Justin
Amy Vlies
My son Kyan is 5 years old, he has Down syndrome. we are still working on potty training. Any ideas in this area would be great. Kyan has had 3 sets of tubes, adnoids & tonsils removed. His last set of tubes are called T-tubes. They were not suppose to fall out, but one did after 6 months, but must be a good sign that his ear canals are getting bigger. He has not had an ear infection since. Getting his tonsils was hard on him. It took about two weeks before he started to get back to himself. Other than that he is a very happy boy, he loves sports and playing with his toy motorcycles & 4-wheelers.
vann nicole a. zabala
My son is the “Love of our Life” he is also “The apple of our eyes” my husband is very affectionate to our children especially Nico he has Down Syndrome.If we go shopping/malling everybody stare at him, all he said is “hello, and with waving hand” and everybody is saying that, i am lucky to have a son like Nico..He complete our days,he is the joker in our house,I am very proud having him as our son…
helen colon
my daughter has ds and shes the best thing that has ever happened to me. im a single mom and i have 5 other children whom love her more than life itself and they all are learning from her and she from them. im proud to have her in my life and woulnd change her for the world.
belinda connor
My name is Belinda Connor and I signed up for this site and got the activation email but now its not letting me get in. please help
Justin
Did you look in your spam folder?
akousoulis
Well said. It is not a technicality, but the right way to say it.
Rosaline
Being a working mother, God has changed my life,by giving me my special 3rd kid, who is 3 years old now. She has changed my life, shifting my passion from work to family,and make me learnt o appreciate things around me.Its also a blessing of the support that my families gave, and my girl is doing as well as a normal kid.
Being positive and encouraging towards the kid, can bring about amazing results.
Katia
I like the way that you wrote this because it was very educational. There are many people that do not have a child or family member with Down syndrome as we do and are sometimes afraid to say anything for fear they might say it incorrectly. This was educational and informative for people who want to learn more, but are afraid to ask. Thanks!
Katia
Down Syndrome Footprint
downsyndromefootprint.org
Justin
I still think this is an amazing post Rebecca…we need more clarification entries to help further educations.
Nicole Hill
I am sorry if I am off topic by we are in desperate need of help. My aunt has a baby with Down Syndrome and she has to have heart surgery. Medicaid had first approved them and then came back and stated they made a mistake and they did not qualify. They have no insurance and she can not work because she has to take care of Madelyn. The hospital has stated that they are canceling the surgery because of the lack of insurance. The doctors say that she needs the surgery now. Does anyone have any suggestions on how she can get help for little Madelyn.
cherie72
Nicole,
Contact the DHS (Department of Human Services) in your county and see what they have to offer or refer you to.
Also contact your representative, congressman and senator for your area. I did this and it worked.
Finally, see a Social Security lawyer. The baby could be on Social Security Dissability and receive Medicare.
Good Luck.
cassie30
i now when my son taylor was born everybody said sorry to hear that and i said no i am not he is my boy and i won’t change him in anyway.and that was in 2005.still have the commets time to time i don’t care he is mine
monic801
Hello everyone my name is Monica..i have a son who is one of my triplets and he has down syndrome..hes 4months old and was born at 32weeks. I’m realy scared and don’t no what to expect i want him to see a dr. that specializes in his condition people are telling me that’s not necessary..how do you feel about that.? he sounds really stuffy when he eats. We’re do i go from getting a good doctor..
Justin
Hi Monica,
I always think that you should try to find a specialist that has experience and expertise with your child’s uniqueness. Please keep in touch and let us know how things are progressing.
Justin