30 answers

My Baby Is Born with down Syndrome

Our boundle of joy had come, we are so happy to have our first baby, but we never expected to have Down Syndrome. Now, we need to prepare to a whole different future for our baby and we don't know how to start. Does anyone had a similar experience? can I get some advice on it? just trying to conect parent to parent. We got social worker, medical assistance, we just need a parental input to handle a whole different life for our baby.

What can I do next?

So What Happened?™

Our Baby is out, healthy and getting over 13 lbs. WE are so happy, and looking back to these emails, we truly appreciate all the support of those mothers who believe in LIFE. We are learning day by day about DS. It's amazing how many misconceptions! Down Syndrome Dallas Guild are excellent resource for more info. It's amazing to know that most of the DS cases can not be diagnosed in pre-genetical testing, and it's soo sad to know that those who get diagnosed, will get aborted. WE can not see ourselves living without our baby. I'm sure you had that feeling too!

Featured Answers

Call 211 and ask if there is a support group for parents of children with Down's. You could also receive services through Early Childhood Intervention. The one in my area has monthly playdates, this could also help you to meet othere.

Please view this website:
http://www.familyhopecenter.org/english/conditions/down_s...

This is just one page----feel free to read all the other pages at www.familyhopecenter.org

I KNOW they can help you like no one else in the world. I have seen them work with families and have miraculous results.

More Answers

First, congratulations. I have a 9 year old son with Down Syndrome. I also have 4 other kids. I have a daugter that is 11, and a son that is 7 and also I have 4 year old identical twin daughters.

They treat their brother just like they do each other.

I would say 2nd, forgive yourself for any negative feelings you had at first. I think most people who replied agreed that they went through a greiving period. It is normal. Your baby is not the baby you were expecting and dreaming of. I had some terrible thoughts the week after my son was born and we were waiting for the test to see whether he had trisomy 21 or not. It is a loss of the baby you were dreaming of.

Third, take things day by day. If you try to think too far into the future it is very overwhelming. The hospital should have referred your baby to early childhood intervention, or given you the number to enroll him/her yourself. They will come out and get your baby started in therapy.

Fourth, you have probably already learned more from your baby than you ever thought possible. My son has taught me so much. He is so very forgiving. He works so hard to learn thingss, and he wants to be included with everyone else. I have also met some unbelievable people through my son. Unfortanely, I also see all the bad around him and people who aren't accepting and who take advantage of people with disabilities. But everywhere we go, kids run up to hug my son, and he knows more people than any of my other kids. They are always asking how he knows so many people.

I am also pro-life and did not . I did not have an amnio. I had 3 kids after, my son and did not have an amnio on them either. I know things are very hard emotionally right now, but take things day by day and love on your baby just like you would if your newborn did not have DS. I will say a prayer for your family. BTW, I really think sometimes that our kids with special needs have extra angels watching out for them.

Hi - Congratulations on your new addition to your family!

I have identical twin boys (they will be 12 next month) who were also born with "a little something extra" (Down synrome). They were almost 14 weeks premature and we didn't find out they had DS until they were almost a month old.

Like someone else already mentioned get in touch w/the Dallas Down Syndrome Guild. I'm a member of the new parent committee for them. They will send out a packet of info and will have a parent representative give you a call (if you'd like to get in touch w/me directly you can send me a message thru mamasource). If you live on the Tarrant County side of town, there's also the Down Syndrome Partnership of Tarrant County (www.dsptc.org). I belong to that group also.

Next is to call the Genetics Dept. at Children's in Dallas and get an appointment to have your new bundle of joy seen at the Down Syndrome clinic. It's a long involved process but well worth it. You'll see a social worker, genetic counselor, a representative from the DS Guild. Your baby will be screened by an OT, PT, ST, etc. They will take a pretty comprehensive health assessment. If you need referrals to any specialists, they will help you with that too.

Then get on the phone to Texas Early Childhood Intervention: http://www.dars.state.tx.us/ecis/index.shtml
and set up an appointment for screening for therapy services. Your baby automatically qualifies for ECI (Early Childhood Intervention) services because of the extra chromosome. ECI is from birth to age 3, then from age 3 through 21, your local school district is required to provide services.

My favorite essay that puts this whole new journey you are now traveling into perspective is "Welcome to Holland" by Emily Perl Kingsley. She was a writer for many years for Sesame Street and has a son with DS. Enjoy: http://www.our-kids.org/Archives/Holland.html

I'm not in your current situation, but I'll be praying for you. I just wanted to comment on Amber B's response. It did sound rude and heartless to say you should have prepared with the prenatal testing. Not everyone even chooses to have this testing. It sounds like you have plenty of love for your baby and want what is best for him/her, so everything will fall into place. I'm sorry I can't offer more support or suggestions, I just had to come to your defense on that comment.

Dear GM,

I want to tell you that I have a 34 year old brother with Downes and he has been awesome. The best advise I can give you is to treat him like you would a child without Downes. It will take more time and effort but always treat him like he has no limitations. My mom and dad did this with my brother and he is very high functioning and loves life. We love life with him. We never treated him any different. We did not set limits for him. My mom always talks about the first time she took him to a special ed preschool class and the teacher asked where his extra change of clothes were, my mom said I didn't know I needed to bring any. The teacher said well what if he has an accident and the strong woman my mom is, responded no he does not have accidents he is potty trained just like my other two. Everyone who comes in contact with him totally loves him. You will have a few of those people are just plain evil but God willing you won't encounter to many but I will tell you that for everyone of those people you encounter you will encounter 10 that are amazing.

God Bless,
M.

to amber -- theres no way to prepare for a special needs child!!

to gm, definitely look into the down syndrome support groups in your area. im involved in a special needs meetup group . there is a lady with a 3 year old boy who has downs syndrome in the group. she is very active in the down syndrome community.. definitely look us up!

http://www.meetup.com/SKwSN-Families/

life is very difficult with a special needs child but there are many rewards! take advantage of all the programs out there and get your family involved so you can get a break every once in a while! definitely enroll in ECI and definitely take advantage of their respite program. they offer 10 hours a month, its not much but it helps. you can choose anyone to watch your child, i use my mother.

hang in there! if you ever want to talk my email is ____@____.com . i have a 20 month old son with Rubinstein-Taybi Syndrome. its much more rare than Downs (less than 1000 cases worldwide since the first diagnosis) but its much like Downs.

My son will be 2 next week and he has Down Syndrome. We found out at birth like you. If you haven't heard of the story "Roadtrip to Holland" google it or I can send it to you - really puts things into perspective and helps in this early stage to understand.

The Down Syndrome Partnership of Tarrant County (dsptc.org) has been wonderful. They have a free yahoo email group of mom's that you can ask questions to or just see what everyone else is saying, they have get togethers, they host educational seminars, etc. It has been the best thing I have been involved with. If you want to send me your information, I can connect you with the person who can send you a packet of information and get you signed up. My email in ____@____.com or call me anytime ###-###-####.

One thing a nurse said to me in the hospital was "Why not you?" I still to this day remember that. You will also realize that your baby is a baby first!

A.

The same thing happened to us 17 years ago. Our beautiful daughter is the joy of our life. My best advice; treat your child as you would any other child. Your baby belongs everywhere any other child belongs. Our daughter is a dancer. She's been in a "regular" dance troupe for 11 years. She goes to a "regular" school. She reads at a 3rd grade level. She wants to be an actor. She will be in a play at her school this week. She's fairy #6 in A Midsummer Night's Dream. She has one line...a very long line. She can say it perfectly. Just relax. Your baby will be the wonder of your life.

I can't offer any practical advice, but one book that you might find reassuring is "Expecting Adam" by Martha Beck. I don't have a child with Down's, but this is one of the best books I have ever read, period. Martha was a Harvard professor when she found out she was expecting a child with Down's Syndrome, and she talks very poignantly about the emotional process she went through in learning to accept it, the reactions she got from other people, and the things that her son has taught her. As she puts it, she "had to unlearn virtually everything Harvard taught her about what is precious and what is garbage." It is a very funny and moving book.

Enjoy your beautiful baby!

There should be a Down Syndrome support group in your area. Check with your case worker.

Congratulations! You are truly blessed, just remember…

God has a plan and it is a perfect plan! He doesn’t make mistakes, you have been chosen.

E.

Your baby is such a blessing! Your baby will bring you many days of joy!! A GREAT place to go and get info and to get involved in is the Dallas Down Syndrome guild. They have lots of info and many activities. They are a great group of people and a wonderful support system. Their web address is:

downsyndromedallas.org

I do not have a lot of advice as I am not in your same situation. However I do have an Early Childhood Degree and taught Kindergarten for years. I want you to know that you have just as special of a gift as any. Most Down Syndrome children are very high functioning and integrated into the regular classroom. I hope someone will respond to you and I am certain there are support groups out there. Take Care and I will lift you and your family in my prayers this evening.

I happen to be a home health for one such beautiful baby girl. Her parents were blessed to have her since they had been trying to have a baby for some time. They also did not have any tupe of testing and they have said that even if they had they would have chosen to keep the baby. There are so many advancements in the general knowledge of how downs affects the body. I would encourage you to get involved with a support system. There is one in tarrant county that meet monthly and have fundraisers. If you are interested I could ask who you need to contact. Good luck with your little blessing.

A.

Hi, GM,
Our church, Custer Road United Methodist in Plano, has a program called Friday Nite Friends. This program provides respite relief for parents and siblings of children with disabilities. Parents can take a couple of hours off and just go to a movie or dinner or whatever they would like to do. I am sure there are lots of parents involved in this program who would be happy to share their experiences with you. Please call Judith Jolly at ###-###-#### ext 247 for more information. here is the web site also. http://www.crumc.org/templates/cuscusterroad/details.asp?...
God bless you and that sweet baby!
T.

Contact the staff at Our Children's House at Irving. They have great resources for parents of children with special needs, including parent support groups and workshops on how to prepare for your child's future, especially if something were to happen to you, your spouse, or both of you. They also have daycare and therapy programs and scholarship assistance.

You can also call The Rise School...they belong to a network of preschools (starts around age 1) for Downs babies. They also have typically developing children there..my son was there and we loved it. They are an amazing resource for families in the Dallas area. Just amazing.

They are located just east of the tollroad on Royal Lane.

I do not have a Down Syndrome child. My child is autistic. Just yesterday I watched a fantastic video on Down Syndrome given to me by our Tomatis provider for a friend of mine. The DVD is called Changing Minds and is about what a Houston mother and a group of friends did for their kids. Basically they did thier own clinical trial. It would be worth looking up this mom. The website is www.changingmindsfoundation.com. N.

Hi there,
I just wanted to give you some words of encouragement. My sister has Down Syndrome and she lives at home with my mom and dad. I have a good relationship with her, we were like twins when growing up until the age of 3, when I learned a little faster than she did. Back then the schools and daycares where not that good. Today they are much better taking care of and integrated. Also she is a very good aunt to my children and they just love her. I am not sure if my son has noticed yet that she is a little different, but they are so cute together and we take them to movies etc.
Anyways, I just wanted to tell you that having a kid with Down Syndrome makes you a better person in life. I know that, because having a sister like her makes me see the world with different eyes. If you need any advice or just need to talk, you can contact me....

Congratulation on your new baby! I have a special needs child and know you will face many challenges but your blessings and the love of your child will out weigh them. When your child gets older check out special needs gymnnastics - Denise Anderson is great with special needs kids! www.specialneedsgymnastics.com I'm not sure what age she takes them? 1 year? you could call her and talk with her, she might have some great advice for you. Enjoy your Thanksgiving and I pray for your peace and many blessings.

Call 211 and ask if there is a support group for parents of children with Down's. You could also receive services through Early Childhood Intervention. The one in my area has monthly playdates, this could also help you to meet othere.

Hi there. My name is L. Ellis and two years ago our daughter was unexpectedly arrived with Down Syndrome. I had a hard time adjusting. One thing that really helped was connecting with other moms and kids in the community. We connected through the Down Syndrome of Dallas' Mommy and Me program where I could see older kids and talk to the moms and get support. It helps to see how great these kids are and what all they can achieve. I didnt know much about DS so I tended to expect the worst.

Although I still get sad sometimes, Kate's light shines so bright. She is a delightful, funny, talented and smart little girl. We are happy to have her.

Let me know if you have any other thoughts or questions. My email is ____@____.com

Please view this website:
http://www.familyhopecenter.org/english/conditions/down_s...

This is just one page----feel free to read all the other pages at www.familyhopecenter.org

I KNOW they can help you like no one else in the world. I have seen them work with families and have miraculous results.

Sometimes the journey you expect is not the journey you receive, but the journey you receive is no less joyful. It sounds like you have made excellent preparations for professional assistance, good for you! The only advice I can give you is the same advice I would give any first time parent - hold on, you're in for the ride of your life. It's scary and fun and sometimes makes you sick but in the end....you'd take it again.

Hi- I have a question-why does this baby's future/life have to be different because your he/she has Down Syndrome? My little sister has this difference and she went to regular public school with all other kiddos. She is doing great and when put in a classroom with "regular" children she is blossoms! Don't make judgements about what you think your child "will" be like... Just enjoy him/her and see how things go. Of course they may need extra help with different situations but if you are already limiting your child by saying you have to plan a "whole different future"? Be positive! Your child has endless possibilities in this day and age.... He/She may not be a surgeon or a lawyer necessarily, but there are millions of opportunities out there. Please keep your minds open and enjoy your precious gift. This little one came into your lives for a reason and you will learn as much or more from this child as he/she will learn from you! Congrats--- and remember to keep an open mind- the sky is the limit!

I too was very surprized 24 yrs ago when our 1st child was born with DS. I was only 19 had a great pregnancy and was low risk. He has been the JOY of our lives though. We had 2 more children within 2.5 yeras later that were fine. I did get a visit from the down syndrome guild and they were helpful. That would be my first suggestion to contact them, they have resourses that others don't. I have tons of wisdom on the matter you can call me or email me and we can chat. ____@____.com ###-###-####.
Weird that we have the same initials.

G. M.

A charitable org called "Special Care & Career Services" is dedicated to helping families of special needs children in the years before and after the children are eligible for public school. You should google the name and contact them; they can put you together with support groups and perhaps give you some options for training etc before your child reaches school age. God bless you and I know He will be watching over you and your child.

First of all...take a deep breath and know that everything is going to be fine. Our 2nd daughter was born 3 years ago with Down syndrome, and we were not expecting it. It threw us for a loop right at first, because we were terrified of all of the unknowns. All we knew was that we had been chosen to take care of this precious child. We cannot imagine our lives without her. She brings joy to everyone she meets, and changes people's perceptions of children with DS every single day. She, like every child with Down syndrome, is an amazing advocate.
We have been very blessed, because both of her heart defects healed on their own...and she hasn't had any other kinds of medical problems, except for some Strabismus (lazy eye) when she is really tired or concentrating very
hard. Abby's biggest obstacle has been her delayed speech, which we are working on. She uses some signs and speaks what we call Abby-nese. She communicates just fine. We can understand everything she says...but those outside the family have a harder time deciphering it all! :)
I know you are scared...believe me, I know... These kids are capable of SO MUCH, though. My best advise would have to be to keep your expectations high. Your child will play, laugh, cry and grow just like any child. It might take him/her a little bit longer to learn things...but he/she WILL LEARN THEM. You have to take it all in stride. You will find that you'll celebrate even the smallest of milestones. You will celebrate the tiny things that others take for granted. That makes everyday exciting in it's own little way! Just remember that these children are more LIKE other children than they are DIFFERENT from them. Just treat your child like you would treat any other child.
You have been TRULY BLESSED with a very special gift. Please feel free to email me at ____@____.com if you have questions or need support. I know exactly what you are feeling. Congratulations on the birth of your beautiful child! :)

I have two things -

#1 http://www.our-kids.org/Archives/Holland.html

#2 find an online support board specific to DS... there are several networks.

*hugs*
S.

The Down Syndrome Guild of Dallas was a life saver for me 21 years ago. I was the mother of 3 older children and not real happy to be 40 years old and the mother of a baby that was different. It took me 7 months to get up the courage and stop being so angry. I finally took her to an infant intervention facility in Irving on Stovall St., now part of Baylor I believe. They had day care there that also included her therapies.

Believe it or not, she is the best child I have. I finally got over it about 3 years later and I believe now that I grew up with her.

The ARC of Texas is a great place to get support information, but for moms with new DS babies, the Down Syndrome Guild of Dallas (http://www.downsyndromedallas.org/) has a mom's support group that is great.

One of my worries when I was still feeling sorry for myself, was "She's not going to look like the rest of the family." My husband put it in perspective. "Yes she will, she'll look like herself and she's part of the family." OH...

We are Jehovah's Witnesses and believe that God will bring about future changes in a paradise earth. So, I said "Maybe God will make her like us in the New World." Again, my husband said "What makes you think that? Maybe we'll be like her." Uh OH. Maybe there was something wrong with my perspective?

Another thing I worried about was having the strength to face the challenges I would have, but not to worry, they mostly come one at a time. Also, I was worried about what she'd look like when she was a teenager. Excuse me! Everybody looks different whether they are a teenager or not!

Just remember, this is a baby, not a problem, and you'll do fine.

Just to respond to a previous post, no, not everyone gets their fetus tested to see if it has downs. I have never done any testing other than a sonogram. Even if she did know ahead of time, does that change anything? No.

To the original poster, congratulations on your new baby. I personally have no advice for you, but I commend you on asking these wonderful mommies here on mamasource. They have always been able to answer my questions.

On a side note, I belong to a mom's group that would love to have you (and eventually to playdates, my youngest was born in September). Here is a link http://www.meetup.com/mckinneystrollerstrides/
And, no, you don't have to pay to join the mom's group.

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