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Does anyone have a child with down syndrome?

Posted by on Jun. 24, 2013 at 5:45 PM
  • 16 Replies
If so could you tell me a little about them. Like when they got dx, when did they meet milestones and, what type of therpy do they do?
by on Jun. 24, 2013 at 5:45 PM
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by Amanda on Jun. 24, 2013 at 6:33 PM

No experience, here's a bump!

by Michele on Jun. 24, 2013 at 7:28 PM
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My son is 8 and has Down syndrome. We found out the night he was born and it was confirmed a week later when his bloodwork (karyotype) came back.

He has delays in fine and gross motor development, as well as speech, so he gets Speech therapy and occupational and physical therapy.

He sat independently at 11 mos, crawled at 23 mos and walked at 35 mos. some of his development (like these milestones) may have been furthered delayed because he had a congenital heart defect that was repaired when he was 27-28 mos old. So, his stamina and strength were compromised somewhat by the heart defect as well.

He is an absolute joy to all around him, because he is very sociable and happy. You just can't help but be happy when you're around him!

If you have any specific questions I didn't mention, please feel free to ask,
by Gold Member on Jun. 24, 2013 at 10:44 PM
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My daughter has downs and is hearing impaired.  She will be 5 in September, but is a tiny peanut for her age.  She only weighs 25 lbs and is the size of a 2 year old, I call her small but mighty.  She is amazing, the happiest little girl, so strong and determined, a fighter.

We had a couple of suspicions of downs when I was pregnant but confirmed it once she was born.

She is delayed in all fine and gross motor, developmentally about an 18 month old or so.  She is still non verbal and did not walk until the day after her 4th birthday.  We still eat stage 3 baby foods as she has not quite moved on to chunks or cracker type bites.  She also has sleep apnea, benign rolandic epilepsy, and instability of the cervical spine, has had tonsils/adenoids removed, PDA heart surgery at 2 weeks, and is scheduled for ear tubes next month. 

She has weekly OT, feeding, and speech/hearing therapy; she had PT until she walked.

But honestly, all that medical stuff is just a bunch of diagnosis.  It does not define for me who she is.  She is amazing and the biggest joy.  She may not be able to say a single word, but oh how she loves.  It just radiates off her and her big smile and shiny eyes.  Our whole family adores her beyond belief, definitely our best surprise gift ever!!

Feel free to respond back or PM me if you have any questions.  And if you have or may be having one, don't be afraid.  They will be the biggest joy of your life!  Society and doctors teach us to fear downs syndrome, but a child with downs is so much more like a typical child than they are different.  And they are all sorts of wonderful!  Not one thing with my daughter has ever been a drawback or something I would not willingly choose 1000 times over.



by Silver Member on Jun. 24, 2013 at 11:05 PM

My son is 6 years old. We didn't find out till he was about  alittle over 2 months. He had super weak muscle tone so it took him over a year to sit up by himself he was around 3 before he started walking, he is still pretty much non verbal but he is trying to speak more and getting better. I had all sorts of emotions when I found out, I mean ALL emotions, but I can honestly say for as much as I was freaked out and scared, everything is fine! It has it's moments but there are FAR more wonderful moments, he has so much personality!! If you have any questions feel free to ask anytime!

by Ruby Member on Jun. 25, 2013 at 2:54 PM

bump for more replies

by on Jun. 25, 2013 at 3:48 PM

No experience here, bump

by on Jun. 26, 2013 at 1:04 PM
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My son is 3 1/2. We found out that he has DS five days after he was born from his karyotype, although a specialist told us she was 99 percent sure on the third day. He has some minor health issues, but hasn't required surgery for his heart (3 VSD's at birth). He has had two sets of ear tubes, and we had his adenoids/tonsils removed this spring (which was the most horrible ordeal of my life, but totally worth it in the long run). We have been so blessed that he hasn't had the kinds of health issues that so many kids have! 

He just started walking independently, but he has always been very active. He still eats some stage 3 baby foods (to get variety in his diet), but he self-feeds with his fingers very well. We still give him a couple of bottles of milk with Pedia Sure every day to make sure he is getting his calories/nutrition/fluids. However, he will drink some from a sippy cup, just not enough to stop the bottles yet. We had occupational and physical therapies from his second month to now, and added speech about a year ago. He is a bit small for his age, but he has recently hit a growth spurt! He just seems younger than his chronological age. He is very much a "typical" kid -- social, playful, chatty AND (at times) stubborn and ornery. He uses about 10-12 signs regularly and has a speaking vocabulary of about 15 words. 

He has gone to an educational daycare for two years, integrated with his age group peers. He also started preschool at age 3 in the special education program at my daughter's elementary school (half days). He has friends at school, and we are in a DS playgroup. We really don't raise him any differently than we did my older daughter; we just cater to his interests and development. We don't worry about where he "should" be; we focus on where he is, who he is, and where he needs to go.  I wouldn't change him for anything in the world! We feel so lucky every day...

by on Jun. 26, 2013 at 3:41 PM

People with down syndrome vary widely. They could be fairly on par with others of the same age or way behind. You can't predict something like that...

My uncle has down syndrome, he is in his 40s. I wouldn't trade him for the world :)

by Michele on Jun. 26, 2013 at 5:50 PM

My Logan is 2 and a half. They told me in the recovery room from my c-section that they were pretty sure he had it. I just remember them talking about the shape of his eyes, the placement of his ears and the crease across his hand. The blood tests confirmed it about a week and a half later. I don't remember when he started sitting. I think at like 6months. He started physical therapy and working with an ITDS at between 2-3 months old. He was crawling at 10 months and I mean crawling on hands and knees booking through the house. He started walking at 18 months. He still doesn't talk but works with a speech therapist. He really started blossoming when I started him in daycare. He has learned so much just from interacting with kids his age. I love to talk about Logan it's my favorite subject. LOL. Feel free to hit me up with any questions.

by on Jun. 26, 2013 at 6:37 PM

My step son does. He lives with us full time and was 2.5 when I met him. I'm not to familiar with milestones except he was potty trained at 5 which is really early for downs kids according to the dr. He was diagnosed the day he was born they knew he had it by looking at him. He has a hard time speaking its really really hard to understand him but otherwise he's really healthy. He does have some learning disabilities and he gets speech therapy and occupational therapy. He was in physical therapy but had knee surgery last year and they said that PT would stretch his knees out to much.

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