November 15, 2010,
G.M. asks from Dallas, TX on November 23, 2008
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.
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!
J.O. answers from Abilene on November 24, 2008
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.
D.B. answers from Dallas on November 24, 2008
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L.D. answers from Dallas on November 24, 2008
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.
J.G. answers from Dallas on November 24, 2008
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
D.H. answers from Dallas on November 24, 2008
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.
M.H. answers from Dallas on December 05, 2008
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.
G.H. answers from Dallas on November 27, 2008
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!
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.
A.C. answers from Dallas on November 24, 2008
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!
S.H. answers from Dallas on November 15, 2010
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.
L.H. answers from Dallas on November 24, 2008
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!