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. Down syndrome children are affectionate and approach life with an enviable joy. Parents, family and friends can profit from time spent with people with Down syndrome.
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.
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
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.
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.
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!
early childhood education online…
I found your post comments while searching Google. Very relevant especially as this is not an issue which a lot of peaople are conversant with….
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
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!
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.
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
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
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
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
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
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.
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
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?
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!
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.
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
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.
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.
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!
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
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,
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.
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.
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
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
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
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