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.
Leticia Velasquez
You forgot the source of my strength as a mother of a six year old daughter with Trisomy 21; my connection with God, fostered by my Catholic faith. When I was expecting Christina, I was at Mass and though I had refused all tests, Jesus spoke to my heart, saying, “you’re going to have a child with Down syndrome”. I didn’t believe it was Him at first, but a few moments later, while on line for Holy Communion, I ‘heard’ the same inner voice say, “I want you to receive this child as a gift from My Hand when you receive ME”. This I couldn’t deny, and my tearful resonse was, “Yes, Lord, but please bring my husband along for the ride”. He didn’t believe me, and I didn’t blame him, but four months later, we learned what the prophetic voice of Christ said was true; Christina had Down syndrome. And she is a gift from the hand of Christ, to us, our two older daughters, and the world.
The world is bereft of over 90% of babies with Down syndrome who are aborted when their mothers receive a pre-natal diagnosis. Just think if those mothers had the benefit of the eyes of faith to see them through the difficult time of discovery and adjustment to their child’s disability. They would see the ability in the word, disability. Ability to love without judgement, to see the smallest flower on the side of the road, and rejoice, to surprise their parents with accomplishments above expectations, and to expand their capacity for hope, patience and love.
I have made it my goal as a writer to share this joy which Jesus told me about with all who would listen.
Justin Jilg
Leticia,
Thank you so much for being the first to comment on DSC…I very much appreciate your advice to this community and I’m sure it will be inspirational to expecting mothers as well as families with small children..Because this is a new site, I would love to offer you a forum to communicate your thoughts to the many thousands of visitors that come to DownSyndrome.com every day. If you would like to share your thoughts and experiences to the masses, please let me know via this space and I will help you get set up…
This site is a place for good with varying opinions but the end result it to guide and help. Please let me know if this interests you.. Also, I would love for you to start a group here…the system is still a little raw but it is going to get much better.
Thank you for everything!
Justin
Rene Taugner
I still remember the phone call from my doctor telling me the blood test indicated the my baby would have down syndrome and all of the ultra sounds that followed. I was already on bed rest due to other complications and this was the straw that broke the camels back. I went into a deep depression that I only recently have come out of. I wish someone had told me to read up on downs. I had a very small idea about what down syndrome was. And for whatever reason it never accured to me to research it. Thankfully after my baby was born everyone was very helpful. I was givin a lot of information about downs and all of the doctors where very informative. Over the years, all the therapists and doctors have kept me very well informed about all of the issues that my daughter has. And thankfully she has, at age 4, over come most of her issues. She was born with a vsd that closed by itself at about age 3, she was diagnosed with an intestinal desease at 2 weeks of age(which recquired a colostomy until age 1 1/2), she was on a feeding tube and then had a G-tube until age 4, she has a crossed eye and is near sighted for which she wears glasses, she still does not speak more than about 10 words but is very good at sign language, she has weak ankles and wears braces inside her shoes to help her learn to walk(currently can only walk holding onto things), and most recently we have learned that she has sub-luxatation in her hips which will be another surgury in the spring. This may sound overwhelming but all in all it really isn’t.As a parent of a special needs child you learn very soon not to ask “what next” but also to take things as they come. My daughter is such a joy to have in our life that I would not trade her for a “normal” child for all the money in the world. I want to encourage anyone who may be having a special needs child to research that diagnoses as much and as soon as possible. Don’t let a terrible diagnoses scare you like it did me, try to find a bright side and just enjoy your child for who they are.
Christopher A. Wellington
When I found out that I was going to be the father of a child with Downs Syndrome I was scared at first. I had always considered it to be a privilege to be the parent of such a child but never knew the heartache that went with it as well. I had some experience with Downs Children as well as adults and teens with Downs Syndrome, from volunteer work through the U.S.Army and the Special Olympics.
Over the last four years I have watched my little girl grow and struggle with the medical issues that Rene described above. I can only say it has been the most rewarding watching her learn new things, or say a new word.. It may take her longer to do these things than a child without Downs Syndrome but it is still just as rewarding. Through all of the surgeries, teh worry and the pain of looking into her eyes and watching the looks of “why do I hurt” cross her face and in the same blink of an eye the smile as one of her favorite nurses comes walking in the door was amazing. Don’t get me wrong not everything is fun. I get frustrated as well and sometimes I get mad that she iisn’t like other children, but when I look into her eys and she hugs me I remember I was given a gift. I look forward to the challenges ahead as well as the rewards. Rene Taugner is the mother of our little girl Autumn Jade. She posted above me and told me about this site. As soon as I started looking around I found a place to share my thought as well as my concerns. I hope to hear from the fathers as well as the mothers of children with Downs Syndrome. Justin, Thank you for bringing this site online. I hope to learn more as the years go on.
Leticia Velasquez
Justin, thank you for your kind invitation to conduct a forum here. I am interested in reaching out to other parents, please count me in!
Susan
I have 13 year old daughter with Down’s who is a true joy to my husband, her brothers and I. She also had a VSD as well as duodenal atresia at birth–both surgically corrected within 1st yr of life. She also has Hashimoto’s thyroiditis and is on thyroid supplementation. She had some depression with trichotillomania in response to her dad’s 2nd Iraq deployment which is treated with prozac. So-our challenges haven’t been as difficult on the physical end as some of you–however–we appear to be a little farther along in the growing up process than those who have posted so far. So any advice I can share I am happy to do so. Having a child with Down’s is a special blessing and a special challenge. I am so saddened to know how many people are losing out on the blessing because they refuse the challenge. I can only pray one day, they know how much they missed out on. Glad to meet everyone. –Susan
Lisa Polkinghorn
I stumbled across this site while trying to find information for my daughter and son-in-law. My daughter has a son with Down’s and just called me last night in tears because she doesn’t know how to help her son, Evan. Evan is five years old and has suffered many physical difficulties but is pretty much past those. The biggest problem they are having with him now is getting him to participate in cleaning up his toys, coming when called, and just general obedience or maybe I should say just general responding. He used to pick up his toys but now he refuses. Where can she get help in dealing with those type of issues? He goes to public school for half a day and his teachers say he is beginning to not pay attention or respond to them either. And, could nutrition be a problem in his behavior? Is is often with his other grandmother who indulges him constantly with sugar, including lots of chocolate milk and even Coke! Would these items affect his behavior? He desperately needs speech therapy and occupation therapy which the school does not offer but they cannot afford private sessions. They do not qualify for Medicaid either. Any suggestions in that area? This is a lot of questions but we are in great need of help! Thanks to anyone that can help!
Susan
Hi Lisa–I can offer some advice that may be helpful. My daughter is quite strong willed and has her “moments” when she refuses also–and there was a time when she tried to refuse on a regular basis. the first thing is to get EVERYONE on the same sheet of music. Which ever parent the “other grandmother” belongs to HAS TO be the one to draw the line in the sand so to speak. First let her know how much they appreciate her love for Evan–then say, (for example)”because we know how much you love him–we want to share with you some difficulties we are having. Evan is having trouble with following directions and maintaining the skills he has learned. This is going to create a serious problem for him later if we do not, as his parents, deal with it now. So–we are having to limit Evan’s time away from us. And when we all come to visit with you–we need you to help us enforce the rules so he knows what is expected. Children with Down’s need LOTS of reinforcement–but once they “get’ something–they usually don’t forget.–So we need to be sure he has consistent rules, consistently enforced.”
From there–Evan should not be spending time with anyone who can not maintain the rules. When Evan is at school–and at home–the rules need to be the same. With Valerie–when she refused, I simply took her by the hand and “helped” her pick up her toys, if she didn’t come–I went and got her–took her to where I had called her to come and said, “when I call, you come”. Then I would say– now stand here. and when I call, you come–and I would go a few feet away, call her–and repeat until she came–once she came to me–then I hugged her and told her what a good job she did.–Praise and hugs worked great with Valerie. If she needs punishment–old fashioned standing in the corner or facing the wall for 5-10 minutes works well. Always after, we ask her–do you like to stand at the wall and not play (no)–then next time you need to…. and we tell her the right thing she needs to do—then hugs and kisses and “I love you, but you have to act right.” Lately–(Val is 13) she has had serious PMS with her cycles (she’s been on them for a year and a half–pms getting worse past 6 months). She acts out pretty badly on those days–so she’s lost priviledges–no movies, sandwiches for supper instead of her favorite (speghetti). Mostly it is about helping him by showing him–then having him practice–and you may have to do it in steps. For Val to clean her room–I have to give single directions: put all the books on the shelf. Put all the cooking toys in the basket. Get everything from under the bed. Also–get his hearing checked–make sure there isn’t a problem there that is contributing. If he hits or acts out otherwise–always have him apologize–even just using the sign (rubbing right fist thumbside to chest, over heart). as for the diet–sugar, etc is ok in small doses–but never a good choice for standard fare.
hope that helps.
Hope that helps.
Lisa
Susan, thanks so much for all the help! I will pass this information on to my daughter and hubby. They have a little 1 1/2 year old daughter that is ‘normal’ and I think they are beginning to compare her abilities with his ‘dis’abilities. Comparison can become an enemy! I have ten children, ages 26 to 4 yrs. old and they are all different but one (a 14 yr. old boy with severe autism and very delayed speech skills) stands out the most. He is very difficult to take care of and I find myself expecting more of him than I should because of comparing him with his other siblings. Anyway, thanks again. If anyone else has any other information or advice, it is welcome! Sincerely, Lisa
Lisa
Susan, I just read your post again and had a thought about your daughter’s pms problems. I’ve raised 3 girls through that problem so far and they have suffered tremendously until I discovered progesterone cream available at health food stores. Just a little on each wrist does wonders for them! Two of them, plus my daughter-in-law who suffers as well, they keep it handy. Check your local health food store or ask for a prescription from your doctor. Hope it helps!…..Lisa
Alexandra Obregon
Hello,
I am a Genetic Counseling student and I am very interested on understanding what are the psychosocial issues that families with a kid with Down syndrome face.
I have a special needs brother and during my pregnancy, my triple screening gave a false positive. We just prepared ourselves to receive a kid that likely would have Down syndrome. My son didn’t have it but during that time I learn a lot from the books,the most of them written by people that knows the theory only, I would like to learn from the people that lives it everyday.
It will be really nice to hear from you. This will enable me to better understand the needs of the family, I think we are ready to manage the complications from the disease, but I think the management should include some way to help the family further than just the medical part.
I am looking forward to hear from you,
Alex
Tammy Lietz
I am the mother of a Down Syndrome Girl who is 11 – she has 2 older siblings who do not have disabilities. What questions do you have??
Susan Mateo
Lisa– thanks for the info on the progesterone cream…do I apply it everyday–or just the days immediately prior to her cycle? Does the healthfood version store have directions? Is there a particular brand you found effective? Thaks for this info. Also–since you have a large family-perhaps you have seen this problem also: my daughter has been intermittently pulling her hair out for the past 2 years. I can not seem to find a specific trigger or effective deterrent. Have you every run into this issue? any suggestions?
thanks, Susan
Susan Mateo
Alexandra,
Everyone’s “experience’ with Down’s is somewhat individual. Down’s kids range in “intelligence” and abilities in as broad a spectrum as non-Down’s kids. It just their Bell curve is a little to the left. As for day to day living–mostly, other than physical challenges (like heart defects, etc.)–it is just like everyone else’s everyday living. Only, most things “develop” more slowly. You really get to see it all “unfold” more, because you have to slow down to their speed (things like learning to walk, learning to sit up, learning to clean their rooms–the “I’ll do it and I did it’s” are so “impressive”–It sounds weird–but that’s the best I can explain it–you are just so awed by the process and that they do “get” it). Sometimes it’s frustrating…wishing they could just “move along”–but I had those days with my non-Down’s son, too. You focus on them (the Down’s kids)more..or at least I did–and realized I may have shortchanged my son in that area since he didn’t require me to “see” him as he “got” things develpmentally. One thing is certain: I am so glad I had her. She has enriched my life so much. I worry over her because she has no censor or sensor to warn her of danger. I rejoice over her because she loves so completely and unconditionally. I worry over her not having friends. I rejoice over how other kids at times seem to really like her and take care with her. It is scary and exhilarating at the same time. The best moments are when she just sits next to me because she “wants a hug”. Childhood lasts so much longer with them. I remember those being the “best moments” with my son—and still I get a little thrill when at 17 he will out of the blue say, “mom can I have a hug?” I look forward to having that experience with Valerie even longer. What a blessing.
Hope that provides some insight…
Susan
Jeannette
Alexandra,
I am a 25 year old mother of a boy who just turned three, and my daughter, who has DS and will be one next month. I never had the triple screen done, because i always told myself that I would not self-select my child. Secretly, I never in a million years thought that at my age, I would have a child with DS. My pregnancy was so difficult and unexpected; I had major issues in my personal life (especially my marriage, which was all but disolved). As a result, I found myself wishing that I wasn’t pregnant. I even said at times that I didn’t want this child. My pregnancy was difficult, with me being very sick, but mostly uneventful, until I was 7 months along. That’s when the baby’s liver and spleen became enlarged in utero. Ultrasound after ultrasound revealed no reason for this. As a precaution, we induced at 38 weeks. The day she was born is when I learned the possibilty of Down Syndrome. It wouldn’t be conclusive until chromosome testing was done. I didn’t believe it at all, because to me, she was nothing less than perfect. 10 months later, I still feel the same. We’ve had our ups and downs, but Des is relatively healthy, she had a PDA which was closed in Oct, and her liver has resolved itself. I feel guilty at times because I had “wished away” my baby girl during pregnancy, but she is truly the joy in my life. She has brought my husband and I closer together and because of her, we bought our first home. I take her everywhere with me, and no one reall hints at anything related to her having DS. Many people are shocked when I tell them that she does, because they are most likely expecting the stereotype of a profoundly mentally retarded baby that will never amount to much. The truth is that our babies with DS are just like any other babies-they are beautiful, sweet, and bring joy to the heart. They also are much more mentally apt than most people expect them to be. Des is 11 months old, and she doesn’t sit up on her own or crawl yet, but she claps, waves hi and bye, and says multiple consonants. With proper care and parenting, these children are a force to be reckoned with! I have enjoyed Des so much, that I am entertaining the idea of writing a book about DS awareness to show just how beautiful children with DS are. Most of the books I read in the beginning showed outdated pictures of children. I think maybe if people see just how normal and cute children with DS are, we can improve this 90% abortion rate (which is a travesty). And in the future, I would like to adopt a child with DS to bring me the same joy that Des has.
Rodolfo
well i’m so happy to have a daughter whith down syndrome couse we are like 1 she is 10 but my principal problem, is the puberty please if someone can writte something about how we can deal with it , i know we have to go with her doctor but doctor’s can tell you everything please give us a tips, we are so scare about how to handle that specially me i’m a man and i don’t known what to do on special issues, like i said she likes to be more with me than mom
Justin Jilg
This is a great subject for those of us who have younger children and would like to know what to expect. Thanks Rodolfo. Anyone have thoughts or insights?
Marianne
Hi Rodolfo,
If you wanna exchange more on this subject you can write me: maryrod13@hotmail.com
Jared
My daughter is still several months away from being 2, so I haven’t even pondered such a consideration. While my plan will probably be to have Mom handle this (it’s great to be able to rely upon her), it still brings up a whole host of issues to come in the future. The topic of puberty and all that comes with it would have caused a crisis for me anyways, nevermind the Down Syndrome complexities.
Being my one and only child, this again reminds me that, as far as I’m concerned, many of the challenges that come up don’t seem to be necessarily related to Down’s–it just seems a part of parenting.
Sorry I’m not too helpful on your particular topic, but I wish you the best of luck. Surely someone out there has been through this!
Justin Jilg
How are you doing? Just curious how things are progressing.
Justin
lacey
I have a friend who’s daughter has downsyndrome and she is nine years old. She recently got her period and will refuse to wear a pad. So without that they constantly are cleaning blood fro the house. They ask her to sit in a vinyl chair so its easier to clean but she thinks shes being punished. I was looking threw this site and was looking for information but nothing is becoming usfull yet. So maybe you can help me so I can help my friend with her daughter.
Thank you.
candles
Dear all, I have recently found out that my baby boy whose almost 3 has Down Syndrome. I had my doubts from the day he was born (I am a physician myself) but since he had a relatively normal development and only slight delay in reaching age appropriate milestones so I put off karytyping until recently. Only now his speech delay worries me and I am looking for some good speech therapsit in my area to help me. I only wanted to share my extreme joy of having a baby who has sooo much love to offer, it seems he can fill the whole world with love and there will still be lot to give away. We “able” adults must learn from these gifts of God how happiness can be received by sharing hugs, smiles and kisses even with strangers.
love to all
Justin Jilg
How are things going with your boy? Wondering if there is anything you need?
maria
Hi everyone I am new to this website and I have a niece with down syndrome. I saw a peom on here and cant find it. I wantede to give it to my sister it was beautiful. Can anyone tell me where to find it or the title and author.
maria
I found it thank you everyone. I look foprward to sharing pictures of my neice and gettign my sister to sign up. I think this is a wonderful website and you all are so supportive of one another. I think this will help both of us with Lexi who is 7. Allthe children on here are so beautiful. I am glad to have found this site.
Monique Shimm
Can someone recommend a specific book on raising an infant with Down Syndrome? I am 14 week pregnant and just found out that our baby girl has DS. Thanks!
Justin Jilg
I read the book “Expecting Adam” which I think is a nice/reality-based book on what it is like raising a child with DS. Also, Choosing Naia was a very good read.
Feel free to shoot an email or submit a post if you have any questions.
Justin
Justin Jilg
How are things progressing for you?
jaycee
hi all.where do i start,i have a 12 year old daughter with downs syndrome,and i love her so much,she is my little darling.she was my 6th daughter and as there were no disabilities on either side of the family it never crossed our minds that this could happenen to us.what a shook i was so sad for her and heart broken.silly me it didnt last long ,i think i was more annoyed that the world felt pity for me ,what no boy and a daughter with downs,well one day God spoke to me and said.you have my family,not the worlds and in my eyes youre family is perfect,from that day i realised yes my family is perfect for me and God,it doest matter what the world thinks,i guess God must of picked our family out we now have a grandson with aspergers syndrome and a granddaughter with cerabral palsy,but we all enjoy life and help each other,God sustains us all,just love your children be kind to them,they are so precious,and they grow to do far more than we expect.i love it when my little abby says i love you mum,we have even been to italy ,holland and turkey and i thought when she was born wed never have a holiday again.GOD BLESS YOU ALL.AND DONT SPEND LIFE WORRYING ASK GOD FOR PEACE IN YOUR HEART AND YOULL GET IT AND MOST OF ALL ENJOY YOUR JOURNEY WITH YOUR PRECIOUS CHILDREN,
Justin Jilg
Hi…How are you? Anything new with you that you would like to share? This community is absorbing so much wonderful information and it would be great to see you come back and contribute.
Justin
Monique Shimm
Thanks Justin for the book suggestion of “Expecting Adam.” I already finished it and my husband is now reading it. My sister-in-law heard about the book so she is going to read it and send a copy to my mother-in-law. Of course, I think that a lot has changed since that book was written in the 80′s (I think). I am feeling quite overwhelmed with all the information – I have been reading non-stop since we heard two weeks ago… and I am only 15 weeks along : )
Jaycee is quite right, regarding the pity that is sent my way. It is hard to feel positive when everyone, including the doctors ask “how are you feeling today” in that ‘I am so sorry’ voice. They mean to be helpful, but it is really hard to maintain a positive attitude.
Justin Jilg
How are you doing? Let’s reconnect on the wires or send a message..This is such an important time and I think it would be good for the group to hear your experiences and potentially offer advice and thoughts along the way? Ofcourse, if you are comfortable.
Justin
becky
Hi everyone, my name is Becky and I am the proud parent of a now 4yr old boy with DS. Amis was diagonised at birth with DS and after 11days in NICU we got to take him home and notday goes by that I don’t thank God for bringing him into my life My biggest challenge is potty trainging him does any one have any helpful hints. Our 2yr old is potty trained and Amis tries but forgets or refuses to go on the potty. Thanks for any help.
Justin Jilg
Hi Becky,
Thanks for commenting. Our four year old son is potty training also. I would also love any thoughts others have on this subject. It is definitely one of the issues that concerns me as well. Please feel free to join the site; good resources here to bounce ideas off of.
Justin
Justin Jilg
We are in the same boat; as are a lot of other parents here. I have suggested someone creating a “potty training” group on the site..I know I am interested … please feel free. Also, if you have the inclination to start a blog, post some photos to your album or write on your wire and make friends…I think it would be fruitful to the whole community.
Justin
Diane
I think it is great that everyone is being so positive about living with a child with Down’s. But some days are just really hard! and that is reality! Madison is 8 and is what everyone else said about thier kids, loving, forgiving, cute…. but man is she stubborm and hates!!!!!! Dr’s and anything medical. Now that she is older and stronger it makes life very difficult! Even to put a bandaide on is a major deal and there is just no way to get her to let you do it. Seriously it is so frustrating. And when she doesn’t have a sense of time urgency either, when it is time to leave and she doesn’t want to, plan on at least 15 minutes to find a way to convince her to go. I have 3 other kids and work, but sometimes, Madison alone is a full time job! If anyone has sugguestions I am open to them.
Diane
Justin Jilg
Hi Diane,
Sounds like a handful. I have three kids (all younger than
and suspect that each one will be difficult when they get older. I already see these types of behaviors developing in Teddy so I too am concerned when he gets bigger and more difficult to convince to be cooperative. Is Madision involved in any groups where peer pressure may be an influence on her? I am wondering if she needs to understand that its not appropriate to act that way and see that others in her peer group don’t accept it. Please let me know what you learn b/c I think it is an issue that concerns all parents.
Thanks,
Justin
Justin Jilg
you said it! Teddy is 4 and he is also a load to carry.. Love this guy some much but man, he is typical kid ++++
Wondering if you would be interested in starting a group to discuss behavior problems with kids that have DS? This is a common commented/discussed issue and certainly one I need help with as well. It could be great to have a group created and moderated by someone that is in the trenches (for lack of a better phrase)
Justin
Justin Jilg
Preaching to the choir
It sounds like we have almost identical situations…Let’s discuss on my wire or shoot me a message. it would be great to compare notes and/or commiserate 
Justin
temitope agbebi
Initiaiiy i didn’t no my son has a down syndrome couple with the hearth defect until after 40 day.Though he was born in Nigeria ,so when we got to Ireland we discovered a lot and he had the surgery done in Ireland.I still want to no more about how they grow. Presently where we are staying now is not helpful to the poor boy.
Justin Jilg
How are you? Please email me at justin.jilg@gmail.com to discuss anything you may have questions about.
Justin
Zoe
Hi all I am a very proud mum of a two year old Jessica who has DS we had no idea she did until she was born and it did come as a shock at first and my husband and I were a bit gobsmacked but within an hour we moved straight into ok what do we need to do different? To be honest not much diffrent we also have a lovely 14 yr old Kristin and we haven’t done anything different with Jess she is a bright and clever wee girl she amazes us everyday she has started using her potty her speaking is really coming on she communicaes really well the only problem we have is her walking her feet are too flexible which causes her problems however we have a great physio who works really well with her I agree with some of the comments around the literature etc being out of date I think people tend to generalise and make statements such as ‘they’re so loving’ because they don’t know what to say! I also have to say I feel the medical profession also have a blanket all kids with DS stance they all must use makaton they all must need speech therapy etc and this is not always the case I think the key to being successful parents with our special kids is to remember we’re the parents we make the decisions and put in as much effort as we can to support the needs of our kids what parent does any different??
Justin Jilg
Hey…Would really love to hear more about Jessica…she sounds amazing and her level of development is very impressive. Feel free to start a blog and or join a group or better yet, create one. This site really needs positive, successful stories that can help new parents and visitors understand what kinds of issues (good and frustrating) they may run into in the future. You have a great story imo.
Either way…please make some friends and post on their wires and in the best case scenario. Post some pictures in your album so we can see your cute Jess.
Justin
amyjo
I am so glad that I found this website. As a mother of 7, I look forward to getting on my computer and chatting with other parents that have a child with ds. My youngest son who is 3 weeks old has ds. He has brought me more joy and happiness than I have ever felt with my other children. Don’t get me wrong, I love all my children, but there is a special bond that I share with him that I didn’t with my other kids at this age. Maybe it is because I am older and wiser, maybe not. I just have a sense of peace when I look him in the eyes. I knew before he was born that I would be faced with challenges. Although I will admit, I was upset and wondered why me, I now know that he was sent to me as a gift.
God knew that I needed him more than he needed me. God gives us what we can handle and he knew that I was the best mommy for Kaden.
I love my little peanut with all my heart and then some.
I encountered a sad experience the day after my son was born. There was a little baby girl that was next to my son in the NICU, I never saw her parents and I asked why no one was there to take care of her besides the nurses,(she was a few days older than my son) one of the nurses told me that she didn’t have any parents, that they put her up for adoption because she had ds. That broke my heart into pieces, how could someone do that to this little angel? She was perfect, just like my son. Looking back now, I wished I could have been able to adopt her and raise my son and her as twins. I would have in a heart beat. I think about this little girl all the time, wondering if she will have a set of parents that love her as much as I love my little boy. It is so sad how our society can be so cruel.
I am so happy and proud to tell everyone that my son has ds. It does not matter to me, he is my son forever and ever. Infact, I hope that god will bless me again with another child with ds.
Justin Jilg
Hey AmyJo ..how are you doing?I just realized that I don’t know your son’s name…if you feel comfortable, I would love to hear how things are progressing and would also like to see some pictures in you album or maybe on your blog..btw, love that blog.
Justin Jilg
Would you mind letting me add your blog as a “featured blog” on the front of the website. Your writing is so engaging and meaningful…and relevant to the hundreds of visitors that come here every day.
Also, Would love for you to comeback and impart some more info to the looking for answers as well. Would you be interested in admining a group? just curious..this site needs multiple leaders and I certainly don’t have all the bandwidth necessary
Justin
kennedy10
Hi all. My name is Amanda and my husband and I have 3 kids, Kennedy 10 (ds), Zoe 7 and Brody 6 months. I was told 8 hours after Kennedy was born that she might have Down syndrome. Kennedy has had great health out side of having tubes put in the ears twice; however, this potty thing has been really hard for us. We started when Kennedy was 2 and have just this summer lost the pull-ups. Kennedy is 10 and it has been the hardest fight we have ever had with her. I don’t want to scare anyone, we did many thing wrong, the biggest was not finding the right dr. Kennedy has had sever constipation since she was 6 months, our dr told us that it was something we had to deal with and it was the biggest factor in our fight.
I have cried myself to sleep at night because of this, have asked God that if Kennedy could just get this One thing then I would never ask for anything again. This has been the one issue that has put our marriage in trouble and changed the actives that our family is able to participate in. Kennedy loves to swim but for the past 2 years swim dippers no longer fit so we are cant take Kennedy to the public pool.
I really have wondered if we would ever get to the day that Kennedy would be potty trained and was surprised when she asked me for new underwear this spring. Like I said before I don’t want to scare anyone with what we have gone through but if u feels that there is a problem get help, but remember even (normal) kids have real issues with potty training and now a days it seems that many kids are not in underwear till their 4.
Justin Jilg
Thank you Kennedy. This give us a lot to think about. Your experiences help many families so please don’t ever be hesitant to share. That is what this site is for. As we continue to make progress, we will certainly let you know…In fact, would you consider creating and moderating a “potty training” group on this site. I have been thinking about it for a while but could really use some help from someone that the topic is very important to…
just a thought.
Justin
Cheryln Robinson
I remember the first time the dotor told me my baby girl had Down syndrome. I cry my eyes out and asked god why me and why her. The doctor told me that my baby would never be able to anything past the age7. I just couldn’t get that out of my head so I joined a support group. I learned so much about Down syndrome and I relized the doctor was wrong. My baby Aaliyah is the most promising little girl I know and I know she will be a great person in this world. With the help of love from her family she will be just fine.
Justin Jilg
Cheryln,
We had the same experience. Our original OB basically told us that we should consider abortion. cold, insensitive, uninformed. Well, Teddy and his two brothers are the joys of our lives. Glad you came by the site. I look forwared to getting to know you and your kiddo better.
Justin
becca
My oldest son has DS. i knew before he was born he would. i figured what God gave was willing to give me i’d accept cause i didn’t think i could have kids. Life has been quite interesting with him as the oldest of soon to be 5 siblings. There doesn’t seem to be much info about raising kids when the oldest has the DS. It seems i hear alot about the last child having DS. Is there any info for parents who have more kids after the first one has DS? Shyama is almost 10 now and he has 3 younger brothers and sister and anyday one more little sister. What about info for parents who were in abusive situations when the ds baby was younger and are not now? i always wish he had a better, more loving start in life, how it would have been different, but it has been almost 5 years since we got rescued and he has a very loving stepfather now. I think, aside from all the difficulies he has in life, why did he have to go through such an awfull start? maybe he could have been so different if he had the first 5 years of his life in a loving situation.
Justin Jilg
Hi Becca,
Thanks for sharing your story with us. My oldest child (Teddy) has down syndrome . He has two younger brothers and I know it is interesting to watch their respective development and how they perceive each other and the issues they face…One thing that I can say is that they have wonderful love for each other and I expect that to continue through the rest of their lives. I don’t have any knowledge about children being rescued from abusive situations and there are probably wounds that will never heal but your son has won the lottery in getting out of that situation and into a loving family..Good luck to you and your family.
I’m glad you found the site … I hope you join and share your experiences with the group.
Justin
Jerri Ludlam
My darling little Mahala is 4 years old. She IS potty trained. She can count to 10. She can say her ABC’s and she is the happiest kid I know.
I am 49 years old, and was not really planning to have more children, but God knew exactly what we needed. (although we DID question him when she was concieved, and again when she was born and diagnosed…..) Now I look back and seriously wonder how we could ever be so ignorant. She is perfect!!! She loves everyone. She is sooooo happy about every small accomplishment she makes. (We celebrate EVERYTHING!!!) What a great life!! Things everyone takes for granted and doesn’t appreciate, Mahala CELEBRATES!!! I have learned so much from her!! I now know the meaning of patience, accomplishment, and unconditional love!!! I realize that all the things that so stressed me out in life are not really that important. Family and friends are the most important things there are. SO WHAT if the house is a mess. It will keep til I can get to it. SO WHAT if I’m a few minutes late. Will it really affect my life?? Will I even remember it next week??
Take time with your precious gift (your D.S. child). It may take a little longer, but with kindness and consistancy, they will learn. You will think it will never happen…then …one day…IT WILL CLICK!! Then celebrate and tell your child how smart and good they are!!! They will respond!!
Good luck to you all!!
Jerri
Justin Jilg
Thank you so much for sharing. Your love for Mahala really shines through in your words. We can only hope our children are as happy and progressing as well as yours.
Justin
judy lynn rysdam
What would be the best age to try and start potty training my seven year old son. I have been working on it for some time now. Adrian can pull his on pants up an down. He needs assistant at hand washing. And at what grade level will his teacher help with toielting. My son is seven years old. Going into the first grade. he does pretty good for me at home but I take him every two hrs. He can pull his pants up and down himself. And most night he is dry by the time he wakes up. Adrian has a mild to morderate hearing loss. and he doesn’t talk but is vocal. How can I ask the teacher to also help to get him to go to the toielt away from home? Adrian does stay dry through the night most of the time. any suggestions. Thanks Judy
Ahal
What would be the best age to try and start potty training my seven year old son. I have been working on it for some time now. Adrian can pull his on pants up an down. He needs assistant at hand washing. And at what grade level will his teacher help with toielting. My son is seven years old. Going into the first grade. he does pretty good for me at home but I take him every two hrs. He can pull his pants up and down himself. And most night he is dry by the time he wakes up. Adrian has a mild to morderate hearing loss. and he doesn’t talk but is vocal. How can I ask the teacher to also help to get him to go to the toielt away from home? Adrian does stay dry through the night most of the time. any suggestions. Thanks Judy;…
SANJEEV KUMAR GUPTA
I AM THE DAD OF LUKSHYA AGED ROUGHLY 4.5 YEARS.HE SEEMS TWO ,CAN UTTER MOM,DAD ,WATER ,BREAD,(IN HIS MOTHER TOUNGUE HINDI).CAN RECITE A POEM THROUGH ACTIONS,AND ALOT MORE.HE IS A BIT TOILET TRAINED.HE IS THE ANGEL OF OUR FAMILY AS ON DATE.EVERYONE LOVES HIM BUT I AM WORRIED ABOUT HIS FUTURE.BUT AS THE SAYING GOES NEVER REGRET ATHING WHICH HAS MADE YOU SMILE AND THIS SON OF MINE HAS MADE ME SMILE A MILLION OF TIMES FROM THE DAY HE WAS BORN.I CAN’T SLEEP WITHOUT HIM.I STILL PRAY THAT GOD GIVES HIM AGREAT FUTURE.
Sydney
Justin,
I am currently a senior at Park University in Parkville, Missouri. I am majoring in Elementary Education and I am presently taking a course named, Exceptional Child. I have an assignment to do on Down Syndrome. I will be developing a better understanding of what it is and the ways in which a teacher can meet their needs in education. I was wondering if there was anyway for you to give me some suggestions on how to incorporate and accommodate to their needs in the classroom? One thing that I am really looking for is an activity that I could do in my class to show my peers and future teachers, what people diagnosed with Down Syndrome are feeling. I know this will be incredibly hard, but I would just like them to get a taste of it. This is why I am looking for someone with more knowledge about Down Syndrome. If you have any suggestions, I would greatly appreciate it.
Thank you for you time and I hope to hear from you soon,
Sydney
Justin Jilg
Stay tuned Sydney.. Well have something for you this evening.
Justin
Justin Jilg
Hi Sydney,
Please see the article on the front of the site that was inspired by your comment…Thanks so much for reaching out to try to help you and your colleagues better create a curriculum that will benefit the communities that we live in. We very much appreciate your efforts.
http://downsyndrome.com/down-syndrome-education
Justin
Austin Wilson
I am getting ready to potty train my little girl in January 2010. Being a single dad of a little girl, I am going to get my babysitter to start for me. Any suggestions for me from anyone? I got a potty for her, but her physio therapist suggests a ring ontop of the toilet seat?? Hope turned 4 at the end of October and will be starting school next fall. Hope everyone is doing well and had a great Christmas. Night all.
ali
hi all, im a 22yr old mother of a 3month old baby with DS(zak). i had the triple blood test that showed we had a much higher risk of having a down syndrome baby(1 in 101 compared to the usual 1 in 4000ish) so we decided to have an amnio at 17weeks pregnant and i knew before we even got the results that he would have it, but i was battling against hope.
i remember my bf kept nagging me to ring up for the results but i wouldnt do it, i was in the bedroom and 10 minutes or so later i heard him on the phone asking for the results, his tone went much softer and i knew immediately the test came back positive, we were both fighting against wanting to cry and staying strong for the other, it was a confusing time.
we had discussed what we would do if the baby had DS long before we had any tests done and we had both come to an agreement to keep it. but when we got the results my bf wanted an abortion, but before we were definate on anything we wanted to do as much research as possible, all we found were outdated pictures and imformation on the problems commonly associated with DS, parents praising their DS children as positive as possible without room for any negatives, i dont know why we were looking for negatives, we just needed cold hard facts about living with a baby with DS.
we saw countless clueless doctors who pushed us further towards aborting, even ringing us up to see if we had decided yet.
i became depressed and started grieving for the baby we were going to abort, i found a website about peoples experiences of finding out their unborn child had problems and how they came to the decisions of aborting, i spent many many nights reading through the whole website and crying at every story, i believe doing this was a key point to how i managed to get through it, to put it simply, i cried as though i had aborted, and then carried on as normal.
my bf saw me crying one day and we talked and decided not to abort.
since back then, i rarely think about my child having DS, as he is my first, i dont know any different. i dont even see why we made such a big fuss of it when we found out.
he had a small hole in the heart which closed up 2months after birth, he was born 4weeks prem and stopped growing in the womb at 32weeks. weight at birth was 4lb 12oz, 2weeks ago he had bronchilitus which he got over fairly quickly. his weight now is 9lb.
at 3months he can hold his head up fairly well, he has bilatural hearing loss. he craps, crys, smiles, is loving, and annoying, just like any other baby, but at the end of the day, he is my son, and as aware i am that he might have problems when he gets older, it doesnt matter a single bit.
karl
i think it helps if you believe that god/jesus sent you a ds baby. in reality its just a random event. with 1 billion christians in the world i doubt a divine hand sent you a ds baby. the human mind is easily tricked when your emotions click in….its to bad more people dont think this way, even if its bogus…maybe the abortion rate wouldnt be 93%. ds children and adults are loveable and funny people.
surya
hi
i am surya frm india my 2 year old daughter is down syndrome can any one suggest me which one is helpfull for her she is now walking talk a little bit .
Gina
My husband and I have a 8 (almost 9) year old son with down syndrome and are stuggling to get him potty trained. Anyone with any helpful advice on this would be appreciated.
Justin Jilg
this has to be one of the most difficult things for us as well. we simply continue to try to get him to go potty multiple times / day…good luck! anyone else out there have any advice?
justin
neda
hi my friends i’m neda from iran.my dauther is 4mounths years old and i love her so much i want to know if a useful vitamin drog for DS childs pleae tell me she starts to babeling and smiling.thanks
Tonya
I am the mother of soon-to-be 6 yr. old with Down syndrome. My husband and I did not know of the Down syndrome diagnosis until Jojo was born. While we were in a state of shock at the time, he has been such a complete joy! Jojo is still “in training” for potty training. All I can say is, we have been “training” him since he was 4. Another mom of a child with Down syndrome always told me, “He’ll get it when he gets it. He will do everything, but at his own pace. Be patient and enjoy it.” That was some of the best advice. I highly recommend using sign language. Initially, that is what we used, as Jojo didn’t really speak until he was 3. He now speaks and is starting to use 3 and 4 word sentences. He is in Kindergarten and has started using his signing again as there are some children in his class that are non-verbal. (Makes it easier to say something to him in public without saying anything!) Jojo did have to wear a “helmet” when he was younger, as his hypotonia was a bit severe, not allowing him to rollover and remaining on his back. He now has a perfectly shaped little head! When he got older, it was recommended that he wear orthotics on his feet to correct the pronation of his ankles. They have helped immensely with his walking, jumpiing, etc. They are called Sure Step. They fit right in his shoes, and are very low profile. The hardest thing right now is the not listening. Can be very frustrating, and hopefully, it is just a phase. Signing helps a lot with this. For some reason, if I have to sign to Jojo to sit down, stand up or come here, he takes it more seriously than when I just say it. Go figure!
Justin Jilg
Tonya,
Thanks so much for sharing…It is because people like you that this site is so enriched. Your friend.
justin
Jeff
My wife and I just found out we are having a d/s baby and have been devastated by this news and I am trying to stay positive. My wife on the other hand is not doing so well. I too have been reading about d/s babies and the feeling of the unknown is a little overwhelming. Are there support groups that help and what should my wife and I be doing?
Justin Jilg
Jeff,
I am so sorry you and your wife have to go through this pain. Many of us have had similar experiences. It is very overwhelming but I promise you things get easier everyday as you watch your baby grow and you learn they are just a wonderful little person with their own personality and their own abilities. There are many local support groups that will be able to help you with the many questions you both have right now. I have a list of some in the resources page on this site but there are certainly many many more.
After awhile, you would be so proud of your child just as any parent would be. Please come back with your wife and let us know how things are going.
Thanks for sharing.
justin
molly
My husband and I just found out on Wed. that we are have a boy with DS. This will be my third boy. I have 2 other boys age 4 and age 6 that do not have DS. I am 11 1/2 weeks with this pregnancy and I had my first tri-mester screening and they found extra fluid behind the neck. I then had a CVS to confirm that the baby indeed has DS. I will go back at 18 weeks for another ultrasound to check the anatomy of the baby. I just signed up to this group tonight. I hope to meet with a counselor next week. Thanks for everyone’s responses. It’s really helping me try to understand DS and what to expect. I am very scared because of the unknown but your comments give me strength.
Justin Jilg
Molly,
Please let us know if we can do anything…We wish you the best of luck!
Justin
glendamiles76
I have a four year old son with Down Syndrome. The most frustrating thing I have encountered with people is how they have this stereotype image and lump all people with this condition into one category, acting as if they all act the same and have the same likes and dislikes. I can’t tell you how many times I hear “Oh they are just lovey kids!” “They are so happy all the time!” “You don’t have to worry about them giving you attitude as teenagers!” Yes, my son is affectionate and has a smile on his face when he goes to preschool. However, he has his bad moods and tests his boundaries just like any other child. He is an individual and there is no “definite” way to raise a child with Down Syndrome. My son was born with relatively good health except for deafness in one ear, low muscle tone and allergies to dust, pollen and pet dander. He did not have the operations many kids with Down Syndrome do so his development, while still slower, has been pretty good. He is a child with Down Syndrome, NOT a Down Syndrome or a “Downs” child! (major difference in meanings) So, what’s the best way to raise children with Down Syndrome? Treat them like individuals with their own personalities. Give them whatever medical help they need, but never forget that your child is a human being and should be treated that way!
Justin Jilg
Glenda,
I could not agree more…Thanks for the comment. I believe this is a common frustration for a lot of us parents. Lumping our kids together into one common definition is the same as grouping any other unique group (race, sex, age, etc) … This is our job as parents in my opinion; try to make the world more accommodating and understanding.
Thanks for joining..I look forward to getting to know you and your family better.
Justin
monica
Hello..im monica. I gave births to triplets 12/10/09..two girls and a boy. My son has downs..im sad, confused, scared, i cant find any info on it.. thank god for this site!!
ddureau
What an incredible opportunity to educate others…not just those who interact with individuals with Down Syndrome, but those with all special needs.
Wendy Kohntopp
I have a ten year old son with Down Syndrome. When I was expecting, my doctor questioned the possibility of DS and ran some tests. After the results, she ruled it out completely. So, we went from feeling scared and worried to feeling so relieved that our baby would be “normal.” Then, when Tanner was born, the doctor was obviously concerned and I could tell something was wrong. Aside from a renewed suspicion of DS, he suffered from a severe viral infection (totally separate and unrelated to DS). So we were battling just to try to keep him alive AND grappling once again with the possibility he might have Downs. His features were very slight, and the doctors said there was a 25% chance he did not have it. We clung to that 25%! We didn’t get the final results until three weeks after he was born. We were heart-sick and devistated! In the meantime, they couldn’t figure out why he wasn’t getting better physically. Finally, he went to a specialist in Boise who diagnosed the problem right away and sent him to surgery to have his gallbladder removed. He has had no major medical problems since then!
When the reality of Down Syndrome finally sunk in, I am ashamed to admit I thought, “Why me?–What have I done to deserve this!” But with the help of a loving family, wonderful friends, and a fantastic DS support group, I am totally in love with the most incredible person I have ever known. Words can never express the joy he brings to our family, his friends at church and school, and everyone he meets. His life is not without challenges but it is a good life–a very full, good life! Now I ask myself the same question, “Why me?–What have I done to deserve this most unique and beautiful blessing?”
To those of you expecting a child with Down Syndrome or who have just had a child with DS–things will get better, things will get easier, and have faith and hold on because you are in for the most wonderful ride of your life!
Justin Jilg
Wendy,
It is people like you that help all of the parents who are scared and feeling alone get through their tough times. Thank you for commenting on this site. I don’t think you realize how much good it does people all over the world.
Justin
Cats
That is nice to know that there is a lot you can do for a child with diwn syndrome. I can help with the people that I know that have a child with down syndrome. In my family people keep yelling at him because he has down syndrome and i’m the only one he can come to for help and for love. Thank you