I have a child with down syndrome. Does anyone else have a child with this?

Nicholle - posted on 09/23/2009 ( 69 moms have responded )

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I have a six year with Down Syndrome (the love of my life). I was just wanting to share some stories with the other mothers who may have children with the same thing.

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Karien - posted on 09/26/2009

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I have a son of 3.5 years with ds. His name is Kallen and I also have 3 other boys- 16, 12 and 9 years. I wouldn't choose my life any other way. I have joined a forum where I get a lot of information from other parents- some of there children also has autism- it is www.downsyn.com

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Sharon - posted on 07/12/2011

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We have a twenty one year old son with Down Syndrome who has taught us a lot over the years being in his life. All I can say is to get your child involved in programs for special needs kids and some that are out there and are of interest to your child. I always talk to the people involved to see if they are "open" to the idea.I have even called with an interest in teaching him swimming skills and was told of Special Olympics swimming in our area. I thought about the boy scouts recently and got him involved with the venture crew that is part of the boy scouts that both girls and boys can join- they have to have a type of learning disability at the least, he is learning some important survival/camping skills-it gets him away from the TV! Special Olympics is great, find your local chapter and there is so many different sporting events that go year around!

Sharon - posted on 07/12/2011

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I am so sorry for your loss, yes children with Down Syndrom are certainly a blessing...have you considered adopting?

Sharon - posted on 07/12/2011

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I am so sorry for your loss, yes children with Down Syndrom are certainly a blessing...have you considered adopting?

Ada - posted on 07/10/2011

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Hi, I have a Down Syndrome baby that is 2. He is very strong and intelligent and the only sign you can see are his facial features. He is bright, strong and very intelligent. He sings rhymes (hummimg), and loves to right with his left hand.....Oh i forgot to say he is handsome too lol...

Ada - posted on 07/10/2011

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Hi, I have a Down Syndrome baby that is 2. He is very strong and intelligent and the only sign you can see are his facial features. He is bright, strong and very intelligent. He sings rhymes (hummimg), and loves to right with his left hand.....Oh i forgot to say he is handsome too lol...

Ada - posted on 07/10/2011

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Hi, I have a Down Syndrome baby that is 2. He is very strong and intelligent and the only sign you can see are his facial features. He is bright, strong and very intelligent. He sings rhymes (hummimg), and loves to right with his left hand.....Oh i forgot to say he is handsome too lol...

Janalyn - posted on 01/17/2010

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I also have a son that is 6 with down syndrome. He is such a blessing to our family. His smile can improve any situation our family has had to go through. i would love to excahnge stories with you

Casey - posted on 12/06/2009

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My daughter Jocelyn is 2 and Down syndrome. She is a wonderful little girl, who is the light of my life!!

Jane - posted on 12/05/2009

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Quoting Marie:

Potty Training...now there is a topic. Peter was VERY low muscle toned (didn't walk until 3.5 yrs). I started training at about 4or5 but wasn't successful until at least 8or9. I just tried to get him on a routine of going every hour or 2. I worked full time so It was a daycare provider with the patience to set the timer and take him on schedule. He was also more aware of his peers reaction to his accidents so he began to care to succeed. His tolerance of pain/discomfort is pretty high so he didn't care. I also think getting his core muscles stronger helped his control. I could go on and on. Let me know if you have a more specific question.



Potty Training.......ahhhh, my little boy is 5, he also had VERY low muscle tone and didn't walk until he was 3½ . So far I have managed to get him  not to "poo" in his pull-ups. He doesn't like "pooing" in his nappies and will gesture to go to the toilet.  But I can not get him to wee, I can sit him on the toilet for a long time and he will not do anything, but as soon as he is off he wee's.  He will wee on the toilet in the evening before bed, this is normally when he goes for a "poo" as well.  I regularly put him on the toilet, but he protests, and if I ask him if he needs to use the toilet it is always a firm NO!.  My son's school are going to start helping with his potty training after xmas, we are going to have a meeting to form a "Plan of Action"

Bobbi - posted on 12/04/2009

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I have an 11 yr old daughter and she is a gift from God! She is so smart, a social butterfly, loves and is loved by everyone. Children wsith downs are such special gifts, how could you not love them!

Jane - posted on 11/23/2009

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Quoting KIM:

YES MY DAUGHTER WAS 11 W/DS AN I MISS HER SOO MUCH SHE PASSED IN JULY AN SHE ALSO CHANGED MY WAY OF LIVING AN THE WAY I SAW LIFE I WISH I COULD HAVE ANOTHE CHILD W/DS I TAKE ONE ANY DAY.



I am so sorry for your loss. my heart goes out to you.     I do know what you mean about changing your outlook on life. My son had major heart surgery when he was 4 months old, after watching him go though that and several other surgeries and still be smiling, I never moan about having silly little colds and  things that used to irritate me so much do not even phase me anymore. My prayers are with you whilst you walk down this painful part in your life. God Bless you. Jane x 

Jane - posted on 11/23/2009

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Hi Nicholle
I have a 5 year old who has downs syndrome, he also is the love of my life and I absolutely love talking about him. I feel truly blessed.

Alisha - posted on 11/21/2009

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MY LITTLE MAN IS 7 HE IS IN THE 2ND GRADE . HE IS PRETTY HEALTHY THANK GOD!! I WAS 18 WHEN I HAD HIM. THE DR DIDNT KNOW HE HAD D/S WHEN I WAS PREGNANT. THE DAY I HAD HIM HE WAS BLUE COULNT BREATH ON HIS OWN, AND HAD THERR HOLES IN HIS HEART. HE HAD TO STAY IN THE NICU FOR 12 DAYS THEN CAME HOME ON AIR AND A HEART MANTOR FOR OVER A MONTH. THE HOLES IN HIS HEART CLOSED ON THERE OWN BY THE TIME HE WAS 1. :) HE HAS HAD LOTS TO EAR TUBES, DENTAL WORK, HE HAS A BAD BACK, BAD KNEES, IS POTTY TRAINED BUT HURTS EVERY TIME HE GOES POTTY, AND HIS POOR LITTLE FEET ALWAYS HURT. HE IS THE LOVE OF MY LIFE. HE LOVES TO PLAY WITH MY 5 YEAR OLD SON. IM A SINGEL MOM. HIS DAD SAYS HE CANT HAVE A DISABLED CHILD.. WHATEVER RIGHT. ITS OK HE IS BETTER OFF WITH OUT HIS DAD IF THAT IS HOW HE FEELS. I HOPE EVERYONE HAS A GREAT DAY. I NEED TO GO KISS MY BABIES AND GO TO SLEEP..

Jennifer - posted on 10/15/2009

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i have a 10 year old boy in 5 grade named eli with downs!! he also type 1 diabetes he never had any kind of hearts problems!! him and his 2 brothers are the loves of my life

Kari - posted on 10/15/2009

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Quoting KIM:

YES MY DAUGHTER WAS 11 W/DS AN I MISS HER SOO MUCH SHE PASSED IN JULY AN SHE ALSO CHANGED MY WAY OF LIVING AN THE WAY I SAW LIFE I WISH I COULD HAVE ANOTHE CHILD W/DS I TAKE ONE ANY DAY.


I am so sorry that you lost your daughter, if I may be so bold did she pass because of a complication of DS , I will keep you in my prayers, what a blessing to have her in your life and heart.

Erika - posted on 10/14/2009

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My name is Erika and my daughter name is Mary, she's 16 years old, it's good to have a place like this, to have someone to talk about it, who understands, and learn form them, and it's so wonderful that we don't even known each other, but we have one thing in common, we all love our kids with down syndrom. I was very young when she was born, i was scared because everything i knew about DS was wrong, my daughter has been like an angel in our family my husband has changed for good, let me tell you she always was worry about me when i was pregnant, and let tell you she knew before my husband and i well i have many stories about her, i would love sharing with you.

Nicholle - posted on 10/14/2009

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Quoting Melitta :

Just had a baby girl called Emily 5 weeks ago now and she was diagnosed with DS. Bit of a shock really still coming to terms with it, so will be on here lots for advice and support.



Congratulations! You have the most precious gift you will ever get. Just remember the sooner you get help for her the better off she will be. I started my son (now 6yrs old) in a program offered by a local University at the age of 3 months. It has made a huge diffrence in his development. Do some research and find out if there is something local you can get him in.



 

Brenda - posted on 10/10/2009

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Lots of us with kids with DS! We should have our own section!

I have Desirae, 6, and mainstreamed into kindergarten this year. She's a handful....of joy.

Brandi - posted on 10/08/2009

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Quoting Linda:

Hi, I have a 5 year old son with DS. He was born 8 weeks early. As they preped me for the stat C section they told my husband and I that they were sure he would not live. He came out 3 pounds 10 ounces with a number of health issues. He defied everything they said might happen. He was only in the NICU 3 weeks. The hole in his heart closed on its own. He has had many ear infectons and colds. He has his 4th set of ear tubes and has a mild hearing loss. He is in a Life Skills kindergarten classroom and seems to love it. He has many sensory issues and extreme picky eater. His teachers plan to work on potty training, feeding issues and some behavioral issues. He keeps me on my toes. Never a dull moment.



hey linda,  my son is also 5 and is ds.  sounds like they  are quite similar.  i feel like takai is going through "terrible two's" or something right now.  he is definately a challenge right now and i feel very stressed out most of the time.  i have 2 other sons and i love them all dearly.  i just wish i knew how to handle takai better.  i stress out all the time about his development.  i wonder if i am doing enough at home to help him in his speech and learning.  oh the joys.  i do really love my kiddos.  just a challenging age for takai i guess. 

Marie - posted on 10/08/2009

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Quoting Melitta :

Just had a baby girl called Emily 5 weeks ago now and she was diagnosed with DS. Bit of a shock really still coming to terms with it, so will be on here lots for advice and support.


Congratulations on your new baby girl! I understand the adjustment you have to make after discovering your baby has Down Syndrome. There is a poem describing the adjustment  that I recieved over 20 yrs ago (my son is now 21) This is the gist of the poem...



Think about planning for a wonderful vacation in Italy. You read all the articles and plan to visit all the museums and cathedrals. You buy all the appropriate clothes for the trip. You are so excited! The day finally comes to get on the plane and fly to Italy, but the plane lands and you are in The Netherlands!!! You are so disappointed, where are the museums, where are the cathedrals? You are not sure what to do first and you kinda have to start from the beginning.  But as you spend time in The Netherlands you discover all the beautiful windmills and lovely canals and tulips. You end up have the best vacation of your lifetime! It just wasn't the one you were planning.



So give yourselves time to start from the beginning. You just enjoy your baby Emily, learn everything about her cute toes and button nose...the downsyndrome stuff will fall into place eventually.



 

Alison - posted on 10/05/2009

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my son Bobby, who is 4 years old was born with downs syndrome, no one diagnosed it, he was 6 weeks old before anyone noticed it. Since then weve had great help. Bobby had to have a heart operation at great ormond street at 9 mths, but hey hes doing really well. Hes just started walking and started school 2 weeks ago, we decided to put him into mainstream, and hes doing really well, hes very outgoing and very lovable!! Bobby was under Kenwood Gardens Centre since he was diagnosed till he went to school and they were brilliant, i couldnt of coped without their help and support.

Melitta - posted on 10/04/2009

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Just had a baby girl called Emily 5 weeks ago now and she was diagnosed with DS. Bit of a shock really still coming to terms with it, so will be on here lots for advice and support.

Alison - posted on 10/04/2009

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yeah ive got a little boy called Bobby, he was 4 in July, and he started main stream schooling in sept. He is gorgeous and so loving, and i hate telling him off, mind u when he loses his temper, he loses it big time. I do find it hard sometimes, the worrying, etc. but Bobby is very outgoing, and he enjoys being involved, but because he doesnt talk much and relys on makaton, he finds it hard to play with other children.

Meredith - posted on 10/01/2009

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Quoting KIM:

YES MY DAUGHTER WAS 11 W/DS AN I MISS HER SOO MUCH SHE PASSED IN JULY AN SHE ALSO CHANGED MY WAY OF LIVING AN THE WAY I SAW LIFE I WISH I COULD HAVE ANOTHE CHILD W/DS I TAKE ONE ANY DAY.


You could :)  There's always a need for adoptive parents!



Hi, I have three children with Ds.  Emma is 6 1/2 and has Ds, CP, Autism, and pulmonary hypertension.  Brianna is 3 1/2 and has Ds, and Micah just turned 3 and has Ds.  Micah and Emma were adopted from Ukraine 18 months ago :) Brianna is my bio daughter.  I also have 2 typical bio kids ages 5 1/2 and 3 weeks.



My children are such a joy- every one of them!  I am blessed to now help other famillies adopt kids with special needs from abroad too...  www.reecesrainbow.org :)



 



 

JACQUELINE - posted on 10/01/2009

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My youngest daughter has downs syndrome and she is 9 years old.I felt very very sad when I first learned about her case.But my husband and I had to accept it in order to give her the best hteraphy needed.

Marie - posted on 09/30/2009

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Potty Training...now there is a topic. Peter was VERY low muscle toned (didn't walk until 3.5 yrs). I started training at about 4or5 but wasn't successful until at least 8or9. I just tried to get him on a routine of going every hour or 2. I worked full time so It was a daycare provider with the patience to set the timer and take him on schedule. He was also more aware of his peers reaction to his accidents so he began to care to succeed. His tolerance of pain/discomfort is pretty high so he didn't care. I also think getting his core muscles stronger helped his control. I could go on and on. Let me know if you have a more specific question.

Nicholle - posted on 09/30/2009

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Quoting Frances:

Hang in there. My son is now 37.



That is sooo awesome! I have heard so many Dr.'s say they have a short life span. I hope Jimmy is around for a very long time!

Nicholle - posted on 09/30/2009

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I went to dinner with my son last night. He is so polite and i have tought him good manners. Everytime someone brought us our drinks or our food he would softly say thank you each time. It was sooo sweet also everyone that left the resturant he asked where you going? Most of them stopped to talk but many just walked by. I'm not sure why this bothers me so much but how hard would it be to acknowledge him by saying hello or I am just going home!?

Nicholle - posted on 09/30/2009

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Quoting Marie:

My boy is 21... and I have a niece who is 16. They both have down syndrome. I can't say I have seen it all, but I have seen alot! I would be happy to answer questions and/or listen.



That is amazing! I was wondering about potty training can you help?

Amy - posted on 09/30/2009

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Nicholle, I have a 12 yr old son Cole, that has DS and ASD (autistic spedtrum disorder). He has limited verbal skills but likes to repeat things out of movies and songs. I just found a program that I think anyone that has a child with DS should check out. We are currently working on getting my son on this program. It's called Changing Minds Foundation. There are videos and links to everything you would want to know about it. It has shown unbelievable progess in children with DS. I hope you will check it out. http://www.changingmindsfoundation.org/

Judy - posted on 09/30/2009

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Quoting Nicholle :

I have a child with down syndrome. Does anyone else have a child with this?

I have a six year with Down Syndrome (the love of my life). I was just wanting to share some stories with the other mothers who may have children with the same thing.



Hi Nicholle,



I have a daughter who is down syndrome and she is 24years old now, boy the years have flown some days i didn't think we'd ever get here. No matter what sort of day you have at the end of it if you can smile or have a laugh its a good day, my daughter Samantha (Sam,Mamph) makes us smile and laugh every single day and most of all  help us realise its the simple things in life that are most important..



Judy Kuykhoven



ps - it was lovely to see your post...

TYTYGFVFJ - posted on 09/29/2009

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RITE AN YOR CHILD WILL DO AS MUCH AS YOU TEACH THEM ..DR'S SAID SHE WOULD NOT WALK UNTIL THE AGE OG 8 AN SHE WALKED @ 15MONTHS THAE SAID SHE WOULD NOT TALK UNTIL YHE AGE OF 10 SHE DID IT AT 3 SHE NEW HOW TO WRITE AN DRAW SHAPES SHE KNEW ALL THE MOVIES BY JUST LOOKIN AT THEM SHE ALSO COULD COUNT TO 30 W/OUT HELP ...SO KEEP THE FAITH AN WORK WITH YOUR CHILD EVERY DAY AN YOU WILL SEE. DR'S ARE NOT ALWAYS RIGHT

Marie - posted on 09/29/2009

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Quoting Judie:

Nicholas is nearly 9 (hyperactive/autistic/down syndrome) and prefers to talk in other languages but sadly I only know english and sign but just recently he has really started to improve,he seems to learn and say more words if there is music to them,he never ceases to amaze me with how he seems to remember the words to so many songs,his favourite songs at the moment are The Banana Boat song and G'day,G'day,lol.
We're also finally getting somewhere with toilet training,a whole week now with no dirty or wet pull ups,wooo hooo,so exciting


Peter is now 21 and he was about 8 or 9 when we finally made headway on the potty training. Something about muscle tone and high tolerance for discomfort/pain that made PT difficult. The stronger he became the better he was able to control. Language just keeps improving every year...Peter is still improving his understandability today! Movies and music are his favorites and help so much in his vocabulary and diction. Hang in there...and never lower your expectations.  I find that Peter will only  grow as much as I allow him too. I find that I am setting limits and have to say to myself "How do you know he can't do it if you don't let him try...over and over and over" : )

Marie - posted on 09/29/2009

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Quoting KIM:

YES MY DAUGHTER WAS 11 W/DS AN I MISS HER SOO MUCH SHE PASSED IN JULY AN SHE ALSO CHANGED MY WAY OF LIVING AN THE WAY I SAW LIFE I WISH I COULD HAVE ANOTHE CHILD W/DS I TAKE ONE ANY DAY.


I'm so sorry to hear of your daughter passing. It saddens me to hear that such sweetness can be taken away from us.  I thank God everyday for the joy my son has given me. I will keep you in my prayers.

Marie - posted on 09/29/2009

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My boy is 21... and I have a niece who is 16. They both have down syndrome. I can't say I have seen it all, but I have seen alot! I would be happy to answer questions and/or listen.

Kimberly - posted on 09/28/2009

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My youngest son, Michael, has Down Syndrome. He is 6 years old. He was born with two holes in his heart (ASD and VSD) an open duct near his heart (PDA) and a stomach blockage (Duoedenal Atresia) He had his first stomach surgery at 4 days old, then had to have a repeat surgery for this at 1 month, during which they closed the open duct. He has a peg tube for liquid feedings and still eats baby food due to texture issues. He's had eye surgery to correct his eyes crossing, and this summer had open heart surgery to repair the hole in his heart (VSD), his other hole (ASD) closed on its own....I was 26 when I had him and had no idea until 2 days after he was born that he had DS. My other son, Christian, is 16 months older and has no health problems....After Michael was born, I went back to school and became a nurse. I recently married a wonderful man who loves Michael and Christian to pieces. Michael does not talk very much and is a handful most of the time, but I love him to death....He has changed the world for me and made me learn to appreciate the little things in life. If you haven't already, get the book Gifts....It's basically Chicken Soup for the DS Mother's Soul.....It's a wonderful book :)

[deleted account]

My son is 11. He has been diagnosed Down Syndrome/ ASD (autistic spedtrum disorder)/ ADHD and is also Apraxic. He is non-verbal and using ASL (american sign language) and Vantage (an augmentive communication device) to communicate....

Nicholle - posted on 09/28/2009

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Quoting KIM:

YES MY DAUGHTER WAS 11 W/DS AN I MISS HER SOO MUCH SHE PASSED IN JULY AN SHE ALSO CHANGED MY WAY OF LIVING AN THE WAY I SAW LIFE I WISH I COULD HAVE ANOTHE CHILD W/DS I TAKE ONE ANY DAY.


Kim,



 



So sorry to hear about your loss but also glad that you got to experience the best thing in the world the love form a DS child it is like no other.



 



Nicholle

Melissa - posted on 09/27/2009

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Quoting Judie:

I sure hope Nicholas makes it that far,he was given a 5% chance of being born alive and with the multiple heart problems etc they didn't expect him to make it this far but he is getting stronger every year, or so it seems to me, although he does seem to be getting a lot more croupy coughs and chest infections and they are lasting longer and more trips to emergency,but he's a real battler and I believe I'll have him a lot longer yet :)
ohhh! and hoping his next milestone is sleeping more than a few hours a night :)



My son did not sleep well at night either until I started giving him a nutritional shake called Reliv! It has improved everything from muscle tone to digestive issues. You can get more info, www.reliv.com. My son will turn 3 in December and has been on Reliv since about 2 months!

Linda - posted on 09/27/2009

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Hi, I have a 5 year old son with DS. He was born 8 weeks early. As they preped me for the stat C section they told my husband and I that they were sure he would not live. He came out 3 pounds 10 ounces with a number of health issues. He defied everything they said might happen. He was only in the NICU 3 weeks. The hole in his heart closed on its own. He has had many ear infectons and colds. He has his 4th set of ear tubes and has a mild hearing loss. He is in a Life Skills kindergarten classroom and seems to love it. He has many sensory issues and extreme picky eater. His teachers plan to work on potty training, feeding issues and some behavioral issues. He keeps me on my toes. Never a dull moment.

Cheryl - posted on 09/27/2009

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Hi,I have a daughter with DS, Chelsea who is 16 yrs.when she was 2 mo. old she had heart surgery and other then a few ear infections when she goes swimmingher health has been great. Academically she's probably 4th grade level. she's in the 10th grade this year and focus more on social and living skills mostly, still does math and reading, and loves writing, music, singing, movies and her computer. We've always aloud her to be as independent as possible and taken advantage of all the many resorces that are available for her . She also had two sisters that were raised with her that I believemade a big differance in her developement. Are family wouldn't have been the same without her.To use she is perfect in every way.I could go on and on but know I can't here. She just brings a smile to my face when I think of her. Lots of stories if you want encouragement.

Shelby - posted on 09/27/2009

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Hey, I have a daughter Taylor Nicole, she is eleven. She has Down's and is in the 6th grade. She is so much fun and outgoing....would love to talk about her and your child.

Judie - posted on 09/27/2009

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Thank you,you have really boosted my hopes.The doctors aren't always right. Hugs,

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