Any experience with children/infants with Downs Syndrome?

Question

-Looking for any stories,good or bad, about your experiences with Children and Infants with Downs syndrome.

-What has been good about having children with this conditions in your lives, what has been difficult?

-Has anything worked really well? Tips or Tricks you could share?

A relative just had a baby boy who has Downs syndrome and we were wondering what other people have gone through, we know all about all of the delays that are possible but some personal stories or tips would be nice. Thanks

Answer 1

Hi!...I am a mom to a little boy who is 3 rs old and he also has down syndrome (seems like some who answered here all have boys at the same age...we should start a club!...lol). My son Nickolas is the sweetest and naughtiest little boy I know...lol if it isn't locked up he will get it. shoot, I even have to bungee cord the kitchen chairs around the table otherwise he will move them to the counters climb up and sit in the sink and turn the water on and squirt the dogs....(I had to really control my laughter when he did that the first time) he is a great ptoblem solver. he doesn't speak much, but follows directions extremely well (when he wants to...typical kid). we started him very early with baby sign language and he signs for most of what he wants....here is a great website to learn it. we started Nick on sign language at 6 months. just work on one or two words at a time until he gets the hang of it then go one to others.
http://www.signwithme.com/
I too knew when I was 5 months pregnant that I was having a child with down syndrome as well as a congenital heart defect called av-canal. (Nick had open heart surgery at 4 months old to correct it, he spent 19 days in the NICU and almost died after surgery...but my little fighter pulled through and has not had any complications since.)
when I had him he was already set to go into our counties birth to 3 program and received speech therapy, physical therapy, and occupational therapy along with special education right after he got out of the hospital....this went on for 3 yrs on his 3rd birthday he began an early intervention preschool through our school district and he absolutely loves it! he even rides the school bus and is doing remarkably well!
If you live in the States all counties offer this type of program for children with disabilities...it is the law and they are required to. if your relatives have insurance it will cover some of the cost of the therapies and the county will pick up the balance...if no insurance, the county will pay for it all! there is also a program out there called "katie Beckett" which will offer health, dental insurance to him at no cost (I believe until he turns 18 yrs old) and is not based on income..it is straight title 19. then there is SSI disability which he is entitled to get since DS is considered a disability (no jumping through hoops to get it) but, this is based on the income of the parents and how many family members their are in the household and they have a formula to figure it all out...but if he qualifies he will be entitled to receive a SSI check each month and a state SSI check all depending on family income and will get title 19 as well. all of these programs require a lot of paper work and some time to complete but it is worth it!!!! you defeinetly don't want him to fall through the cracks of the system!....
I think the most difficult thing I have had to learn since having Nick was patience....(never was very good at it to begin with...lol) It may take him longer to achieve his goals, but he does do it and I am very proud of him! and I am proud to be his mom! he is the most loving little boy and always has a big smile on his face and is willing to share his happiness with anyone he meets. sure there are days when he is really naughty and gets into everything and I can't sit down for even a second without him doing something he shouldn't... but he is learning and so am I. Nick has changed all of our lives in my family in the most positive of ways and I thank God each and everyday that we have him. he has also touched the lives of all my oldest son's friends (Jamie is 17 yrs old). because of Nick Jamie sees the person instead of the disability and his friends know he would do anything to protect his baby brother. and they are the same way with Nick, and others that have disabilities...intead of being judgmental and ridiculing others they instead are protective and helpful.....it is amazing how one little boy who is not even 3 ft tall can effect the lives of all whom he meets...I call that a blessing!

Answer 2

Ash, I do not have a Downs syndrome child in my family. I am a dance teacher. I have worked with downs syndrome children and adults in special dance classes for many years. I have noticed some things about down syndrome people -- I have never seen any of them be mean. They have all been loving - this appears to be a natural trait. They generally have the ability to learn and to do more than people once thought. They also don't seem to realize that they are "restricted" in ability and pretty much seem to be a happy group. At the adult facility where I work with handicapped adults - everyone had a boyfriend or girlfriend and it appeared not to be based on who was cute but on how they treated each other. I think maybe the world would be a nicer place --if we had more downs syndrome kids. I know that many have severe heart problems -- one beautiful little girl I work with now(she is l2) is in the 5th grade and her lips, arms and legs sometimes turn blue due to her heart problem. She just handles it with such grace and quite frankly it scares me so much for her. She has some speech problems and isn't as quick to figure things out as other l2 year olds and is an innocent in the ways of the street - but she is wonderful and a delight. Your family is blessed with a down syndrome child there is a lot for you to learn-- the beauty of this child will be shared with all and mark my words - before long you will see this child in your lives for the great blessing it is. They have so much love to give.. Good luck -k-

Answer 3

When I was in high school i volunteered some time in the special ed class room and coached special Olympics. I just want to say out of all the kids I worked with ( all with different special needs) the boy "Jimmy " with down syndrome was the most lovey and sweetest person I knew. He always worked hard at everything he did. He always gave hugs and was very positive to all the kids during training for the Olympics. He always had a great attitude even when things were hard. He was friendly to everyone. I think as your nephew grows that he to will be a very loving,happy, kind and compassionate young man. Things aren't always going to be easy but love and patients will see them through. He is a little love bug and a blessing, wait and see.

Answer 4

I am 39 years old and my son will be 3 in may,he has downs syndrome. When i first found out at 5 months pregnant,i was SCARED to death, i didn't think i would be able to handle it (all the Dr. appointments etc...) but now i don't even see the down syndrome in him, he is about the size of a 18 month, he says a couple of words, but he understands everything we say.Other than that hes fine now. He has had gastric reflux,and he had to have surgery for a blockage in his small intestine. The way hes learning now i think hes going to start talking all at once. I wouldn't trade him for the world.

Answer 5

I used to babysit for a little boy who had downs. He was my neighbor and I remember when he was first born he had a few close call. I remember the ambulance coming on at least one occasion. That part was scary. But he was just fine afterwards.
When he was about 7 I started babysitting for him. He was the greatest kid I ever babysat for. It was difficult at times. He would completely ignore me and a two minute time out turned into a half hour because he wouldn't sit for more than 30 seconds. His parents had given him an old set of encyclopedias to play with. He would "read" them for about a minute then he would start tearing out the pages. (Which now years later is what my 1 yr old does) He also loved to jump on the trampoline. We could spend hours just doing that. So tell your friends its a good investment, because he was definitely more hyper than any other kid I've ever known.
I had the most rewarding experience babysitting for him. He didn't talk very much. He'd say mom and dad and a couple of his brothers and sisters names. But that was about it. Then one day his mom told him I was coming over to watch him and he said my name. As soon as I walked in he came over to me, hugged me and said Libby. It was so amazing I had tears in my eyes.
Also I'm not sure what financial requirements, if any, are required, but this family never paid me for babysitting out of their own pockets. A children's home in our area that specializes in kids with downs and other sort of mental and physical disabilities would pay me. I'm really not sure how it works. But your relatives may want to look around if they don't have a ton of money, or even if they do. I'm sure a downs baby is more costly than a baby whose not. At least where medical bills are concerned.
Tell your relatives congratulations and that they are wonderful people for allowing this child to live, and to raise him themselves. They are the most wonderful kids, they may be more difficult then most, but the rewards are endless!!!

This is a link to the place that provided them financial support. Its in Ohio and I don't know where your relatives are from, but at least its a start. Plus it might give some helpful information. Tell your family good luck and God bless them and their little miracle!!

http://www.sunshineincnwo.org/residentialservices.html

Answer 6

Where to start? I have a son ( 3 1/2 years old) with Down Syndrome and he is the light of my life. He is such a joy!

The link below is to my website.

http://www.about-down-syndrome.com/story-about-down-syndrome.html


My goal for this website is to educate people about Down Syndrome, but to do so in a personal manner, sharing bits and pieces of our lives with our son, and how he is doing etc. Even the tips and tricks are scattered throughout the sight.

I cannot stress enough though, read the story entitled "Einstein Syndrome". It was not written by me, but by another mom of a child with DS, and this is how all children with DS should be treated!

Carrie

http://www.about-down-syndrome.com
http://www.coloring-pages-and-more.com

Answer 7

I am the mom to a 2 1/2 year old boy with Down syndrome and he is an amazing little guy! The hardest thing we have had to cope with was his AV Canal heart defect. Turning a 2 month old baby over to a surgeon for open heart surgery was the hardest thing we have ever done, but he sailed through the surgery (and has his Braveheart scar to show for it) and we haven't looked back. Like Julie, we started our son on sign language at about 9 months. He took to it very quickly and as his speech skills developed, he dropped the signs for verbal speech. Our son's primary delay is physical. As most children with Down syndrome have low muscle tone to some degree, our son has low tone in the abdominal area which has delayed his ability to walk unassisted...but that doesn't stop him from getting around! We expect he will be walking independently in the next 6 months.

The most important thing to offer a child with DS is love. Like any child, they thrive on love and attention and positive reinforcement (my son loves when we clap for him). Patience is important too...a child with DS may not reach certain milestones at the same time as his/her typically developing peers, but he/she WILL reach them....everything in its own time.

Another thing to bear in mind is "labels". If you are referring to a child with DS, it should be stated that way....not "Down syndrome child"....always put the person first...not the condition. Perception means to much. Also, the "R" ("retarded") word is taboo unless it is being used in a strictly clinical sense. People have abused the word and made it ugly and insulting. "Retard" means delayed, not stupid, and I for one will not let people use the word casually around me or my family.

My son is delightful, but he is also typically two. He throws tantrums like any other child, but he also gives the best hugs and kisses ever!

Some children with DS tend to have sensory issues. Toys which are very tactile, musical or colorful are great, however, be mindful that some new sounds, tastes or textures may take some time for the child to adapt to and they should be introduced gradually.

Check out the forum at http://www.downsyn.com and you'll read lots of stories about our precious children.

And by the way, thanks for asking such a thoughtful question...understanding Down syndrome is the first step to acceptance. This child will bring your family more joy than you can even begin to imagine!

Answer 8

they're great kids. downs has many degrees of severity and medical involvment but i've had nothing but great experiences with every kid i've known with downs. don't assume they are that delayed. many are very smart and grow to be independent adults. treat them as any other child. i worked with many downs kids and my girlfriend has 2 nieces with it. both, are wonderful, loving, smart girls.
there are no tricks or tips. they're just children. if delay's are discovered as they grow, the parents will learn how to take care of them. many people i've known, started their kids in a special school program very early, at about 6 months,where the child and parent participate, in order to give the child a head start. have your relative check into easter seals. they should have these programs or be able to direct them. have fun with the new one.

Answer 9

I lived next door to a baby that had it i helped his single father pattern him in the pool he needed much special help and several neighbors pitched in to help

he is a special and very lovable child, He is going to special ed. i think he will have a good life, he is loved and has become a sociable young man. he has learned to speak well and to be appropriate in social settings. He is 16 yrs old now

Problem is he is unable to drive. he also is not good at reading and writing or math.

his dad takes him to work. he works doing laundry at a nursing home

Answer 10

It's important to remember that most of what's involved with raising a kid with DS is just about raising a kid. They're different, but not that different.