How to Raise a Child with Down Syndrome
I would like to preface this article by saying that raising your child, irrespective of the physical or cognignitive capabilties, is no labor at all for a parent.
The guidlines below are simply to guide new and expecting parents throgh some of the more unituitive aspects of their early experiences. Having my child, who happens to have Down Syndrome, is without a doubt one of the greatest aspects of my life; if you have any questions whatsoever, please don’t hesitate to send me an email or submit to the forthcoming form on this site and let’s start a dialog about you questions and concerns.
Trisomy 21, better known as Down syndrome, is the most common chromosomal abnormality in humans. People with Down syndrome vary widely in how they are affected, but health problems and lagging development are common. Children with Down syndrome are special needs children who require special parents. The following are some guidelines that my wife and I have subscribed to. We hope they will help you with your journey.
Step #1
Take care of yourself. When you first learn that you are the parent of a child with Down syndrome, you can feel overwhelmed. It helps to talk to other parents in the same situation. Contact the National Down Syndrome Society about support groups and other resources in your area.
Step #2
Use attachment parenting to promote a strong bond with your child. By responding to her emotional cues, you can better to sense what she needs when she can’t tell you. Involve other family, particularly siblings, in raising a child with Down syndrome. Everyone benefits from these relationships.
Step #3
Find a good medical practitioner. People with Down syndrome are subject to many medical problems, with heart defects, vision and hearing problems most common. They should be screened by cardiologists, ophthalmologists and audiologists.
Step #4
Enroll your child in Early Intervention Services soon after birth. Therapists and early childhood teachers come to your home to work on your child’s development. Physical and speech therapies are usually indicated due to delays in these areas. Some degree of mental retardation may be present as well. By age three, your child is eligible for services through the school system. Learn all you can about special education services and rights in your state.
Step #5
Learn from professionals what you can do at home to help your child develop. Children with Down syndrome often have weak muscle tone and can benefit from movement therapy. To help compensate for speech delays, you might teach your child sign language so that he can let those around him know what he wants.
Step #6
Explore the role of diet in your child’s life. Some people believe that people with Down syndrome have more difficulty with the typical American diet of high sugar, additives and preservatives. Try natural foods. If your child is subject to frequent ear infections, limit produce mucous-producing foods. Ask your doctor whether nutritional supplements like alpha-ketoglutaric acid are needed.
Step #7
Enjoy and Love your child. Just like many things in life, parenting is improved by a good attitude. Children with Down syndrome are affectionate and approach life with an enviable joy. Parents, family and friends can profit from time spent with people with Down syndrome.

John and Machelle
John and I have a slightly different situation and need help, please.
I have a Down Syndrome brother(Shane) who is turning 40 in June and we have been taking care of him since January and he now lives with us permanently. Love and adore him. His vocab is very limited but we communicate with him with lots of love, hugs and laughter. We are having a problem with disciplining him though and cannot seem to get through to him to stop throwing stones in our pool. We feel terrible when we shout at him. John has tried splashing a little pool water in his face, but Shane reacts as though he’s been slapped. We love him and only want the best for him. What would be the easiest way to teach him that this is wrong? This is an adult man and we are the “New Parents”.
Until now Shane has been living with my late mom and frail Dad.
Generally he is only a pleasure. Sweet. Gentle. Innocent. Loving.
Please help us.
John and Machelle.
South Africa
Justin
I really look foward to hearing other opinions on this situation. I have a 5 yr old so I haven't crossed this bridge yet. There has to be a balance between dignity and letting your brother know what is appropriate and inappropriate. Not knowing your brother, it is difficult to know the intent behind some of his actions…is it to get your attention? is it to simply be mischeivious? I know my son will dump out a glass of liquid anytime he passes one…Drive us crazy but it is something that seems to be apart of his personality that can't be easily changed.
Do you practice timeout? I personally don't think the pavlovian water splashing is going to be healthy/productive in the future but again I am not a subject matter expert here.
Other thoughts anyone?
Justin
Richie
I read your post and thought to myself, your brother must really enjoy the splash it makes and how it sinks, I wonder if you could live with teaching him to throw golf balls into the pool instead of stones? Or some win win situation similar.
Jennifer Bailey
Our four year old was constantly throwing his (full) drinking cups on the floor after he had had enough. We were advised to ignore this act and to not give it the benefit of our attention. We tried this for a very long time, but without success. We finally realized that he was doing this, not to seek attention, but because of the gratifying sound and mess it made as it hit the floor. Success came quickly when we quietly escorted him to a short time out in his room (he hates to be left alone) and then, without fanfare or attention, returned him to the scene and assisted him with a ‘hand over hand’ clean up (mostly alread done by one of us while he was in time out). It worked!!!!!
Justin
Fantastic. This is great advice. There is certainly a commonality that I’ve noticed that our kiddos love the result of their “naughty” behavior. Big noises, splashes, bounces, etc all seem to really entertain them to no end. Once we isolate what they are after, it will be much more effective to give them less destructive alternatives in order for them to glean the same pleasure while being much less destructive.
Excellent feedback.
Justin
Neil Mahoney
Hello mymiddle child NEil who is 4.5 yrs old has down syndrome and i am trying to potty train him he has nev3r went pottyon toilet for me or his teachers yet we started beginnig of school year.i would really think he sh9uld be ready he is willing to try but not sure if he thinks its a joke.any ideas? Thanks corey
Su
Hey! It is difficult to say anything without knowing your brother and his behavioral patterns but one strategy that does generally work is ‘time out’, wherein you just ignore or don’t talk to your brother (a kind of isolation) until he realizes his mistake and why you did not give him a positive reinforcement. This will take care of the possibility of him needing attention from you. Do try this method. it helps.
Hope this helps…
take care
rebecca
hi i have a child with downs and they can be very hard headed. i think the best thing is to explain to him slowly without any shouting but showing him what damage he is doing .what you are doing wiith your brother is extremly great . keep it up
D0lly
I have a nephew who will be 11years in few weeks,he talk unco ordinated and cant learn even simple ABC.But very lovely.We are in Nigeria and want to no were to seek help to improve his mental development.Please we need help.
Gemma Hudson
Maybe you could look into some books that give recommendations on how to teach a young child with down syndrome. That is what I did with my daughter. I read all I could, found what I liked, and practiced with her every day. Woodbine House publishing has some good books. “Early Communication Skills for Children with Down Syndrome” is one of the books I used. It is important to practice daily and to make it fun for them.
Dawn Murphy
Hi
Found your information very useful. I am currently studying SEN – Level 3. Part of our course is to do several case studies on various SEN. One of my case studies is on Downs Syndrome. I was wondering if you could give me some advice on mile stone achievments in the first 2 years i.e how much later are milestones acieved such as sitting up, crawling, walking, talking, feeding etc. Also if possible advice on what practioners were needed if any.
This information would be a great help towrards my studies.
Kind Regards
Dawn
Justin
I hate to say this but the range of timelines for kids with Down syndrome are all over the place. Due to the significant differences in our kids, there is very little consistency with child to child. There are some studies that are being conducted which try to measure but I’m not sure what the results are. If you find anything that might be useful to our members, it would be great if you can come back and share
Anyone else have any thoughts?
Justin
Lou Ann
My grandson just turned 7 and has made great strides in learning in many aspects. He is very intelligent but is often frustrated. He still throws everything within reach or knocks everything off of every flat surface. He hits, kicks, and pushes. Time out no longer works. What can we do?
habib irfan
my son is 2 years old i live in india, he is very lovable he is walking but is not able to talk he is trying a lot and is slow in understanding things i ask all of u reading this mail to pray for him , his name is habib ibrahim
Nishi P
try following
>go for special educators who will go with paly and learn therapy at home
>You should send him to play school also : they copy a lot and this way also he will learn lot of things
>Later on you may go for speech therapy too after consulting to a right therapist
i am also fm india and have a DS daughter of 12 Years old
Nada
Iam 27 years old I have a four month old son with down syndrome
Iam still devastated and heart broken whenever I look at him I feel my heart breaking to thousands of prices iam pregnant now and u feel so guilty I feel like my son wasn’t food enough when I look at him I feel ashamed of myself I love him so much and I look after him 24/7
But I feel there is sadness in my life after him I know this sounds unfair but it’s what I feel I wasn’t prepared I found out after birth I have a 3 year old perfectly healthy daughter
I need to speak with parent like me pls email me babygocrazy@hotmail
Justin
Please feel free to email me anytime with any questions or concerns. Justin.jilg@gmail.com
Justin
rebecca
A child with downs can show you a different life and you will learn how precious life is . We should see the best in our children having downs or not . your other child will help him alot . I know its hard but treat your child no different than the other . Try not to worry so much and enjoy your family to the max and i wish you great luck .
modester
i dont want to remember the pains i felt at the first time the doctor told me that my daughter can not be the first in class because of the heart problem she had which was associated with downsyndrome.However I have accepted the situation and have been attending physio therapy to strengthern her weak muscles. thank God she is improving.help me understand what type of diet can help activation of her brain? (if any)
bella
can i ask something..does anyone here has children with down syndrome that had died because of health problem? based on my research..children with down syndrome might be die early..does anyone has experience? can you share with me?
Jackie
My daughter just found out, through amnio test, that her unborn daughter has Down Syndrome. She is considering terminating her pregnancy. She’s 28 years old and will be a single parent. My husband supports her decision to terminate, but I’m not certain that this is the best solution. I need information quickly so that I can speak to my daughter with intelligence about her situation. It seems everyone’s situation is different. Please help…
shelley
Aborting the baby will not be the easy way out! She can always give the baby up for adoption. We have a 10 year old son with Down Syndrome and he is such a blessing. Lots of families would love to adopt a special needs baby. I don’t know your daughter but I do know most women who have abortions regret it for the rest of their lives. Good luck and God bless.
Tammy
Jackie, Please do all you can to talk your daughter from aborting the preciuos child she is carrying. I have a soon to be 12 year old daughter with DS – she is my youngest of 3 children. I did not know I was carrying a child w/ DS until AFTER she was born. If I had known prior to, I would not have aborted, BUT I would have had a MISERABLE pregnancy, feeling very depressed etc… I was very, very upset, went through a great depression, felt compelled to pray to God to take her as I had such fears of the “what ifs” and the “what will be”. I love my daughter sooo much and her older siblings do also – yes there have been some tough times, and continue to be at times, but I would never replace her for the world. PLEASE have your daughter contact me if she has any questions etc – God Bless and my the right decision be made!!!
rebecca
i have a child with downs and he s 7 months now and he does whatever other babies do . It takes alot of hard work but believe me hearing mummy at 6 months it was the best achievment ever . children with down s can lead a good life if we dont treat them with a disability . I would tell your daughter not to do it . They are such lovable children . and is there anything perfect in this life ????????/nooooooooooooooo. you can have a normal child and god forbid something bad happens what will we do ? We ll be there for them and help them through the rough time they are going through . i feel blessed that god decided to give me a child with downs as he made me realise that life is so precious and we are only worried that we have nice cars and all the material things but the most important thing is to be loved . your daughter will need alot of support and i believe that with your help you can get through this . I wish you would convince your daughter as she ll be missing out on such a great experience ………………….. being a mother
CMBH
My 3 year old daughter has ds. It’s hard enough to raise her with my husband, I can’t imagine all that stress added to being a single mom. I really don’t see a lot of people waiting in line to adopt special needs children. Good luck and peace to your daughter, whatever she decides. Ds is truly a life changing diagnosis.
Edna tapuika
i have a down syndrome son who is 13 years old. I am from the solomon Islands and do not have very much help and support. I would very much appreciate advices from you.
thanks
edna
Tina Duggins
Hello all:
I am a grad student with Liberty University. We are doing a project on different cultures. I have chosen to do my research on parents raising a DS child. I do believe that you all have your own culture with all you have to deal with. Can anyone give me a synopsis of what it’s like to raise a DS child. I’ve read your blogs and I think the work you are doing with your children is wonderful. Regards,Tina
Roseanne Kelly
I just read your request, I have currently 2 children attending liberty university, it is a wonderful college. I also have a 3 year old son with DS. If you need some info please feel free to contact me. Our little angel just lights up our world..God Bless
Megan Boivin
I am involved with a man who has a child with down syndrome. I met them both 4 years ago. Connor was 3 years old and is now turning 7 on Saturday. At first when I would watch him, I fell in love with him. He was so cute and loving. Now I’m finding that as he is getting older, when I watch him, he throws himself on the floor when I ask him to do something he doesn’t want to do, refuses to use the toilet, yells at me and just flat out doesn’t listen. He’s always been happy to see me and loving and great. But the last 2 months it’s completely different. I’m not sure what happened or how I am supposed to react to it. My feelings are hurt because I don’t know what I could have possibly done to illicit this response from him. We are on the same schedule and do the same things every Tuesday and Thursday when I watch him. Is there some kind of class I can take to maybe help me learn how to be a part time caregiver or something? I’m at a loss an I want to be better for him. Or decide wether or not me being in his life is harming him in anyway.
Tiffany
I was to ld today that my child will be born with DS. I am 22 1/2 wks, and in Florida, where I currently live, termination can be done until the 24th week. I want to have the child but am very worried, as would be expected. I am single, and this is my first child. My life is not perfect, but I feel I have the love it takes for any child, even with DS.
Some of the blogs I have read are scary, and I cant help but wonder if I will ever have any kind of life myself. When I wonder that part, I feel guilty. I do not have much by the way of family to support me when needed. Please feel free to advice me on what it is like, it is much appreciated.
Deb Marchese
Please HELP-my son is 14 years old & constantly tells us NO to everything-my husband & I are at our wits end-we just don’t know what to do any more.When he tells us no -we can’t move him because he is a big boy(about 200lbs) so there is no moving him without hurting ourselves so it becomes a waiting game.We just don’t know who to turn to,his behavior is so oppostional at home but no problems at school.I have talked to one of his doctors about putting him on some kind of medication that would help his opposional behavior but they don’t think there is any thing that they feel will work because they think it is because he is a teenager & his hormones are going crazy.But then I hear from other parents that there is medicine that would work so I just don’t know what to do-PLEASE HELP!!!!!