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Post by ibby on May 11, 2006 23:30:26 GMT -5
Wow! I have been looking for a forum like this! I'm so glad to have come across here today. I'd like to introduce myself. I am pregnant with my 11th child, due in June. I just found out last week via amnio that we are expecting a Ds baby. Our children range in ages of 17 down to 11 months. Since we know this baby is a boy, that will make 6 girls and 5 boys.
It is so comforting to know that each of you understands how I am feeling right now. I truly love this child, of course, but I think it is hard to know ahead of time...because there is no joy. I was explaining to our children, if we had found out when the baby was born, we would have had the joy of holding him in our arms to help ease our initial pain. But I do believe finding out ahead of time was in the best interest of this baby....we can work through all these feelings now, and then just be ready to love him when he arrives.
Being a very busy mother already (obviously) I am concerned about learning as much as I can about Ds. I want to be very good at this, but I'm such a rookie! Are there any specific resources that anyone can recommend?
I am very much looking forward to getting to know all of you. I belong to a few other internet forums and very much treasure the friendships I have made.
May God continue to bless you all!
Ibby
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Post by brocksmommy on May 11, 2006 23:52:40 GMT -5
hi ibby and wecome to Uno mas!!!! ;D ;D ;D congrates on your little boy (coming soon) I, only a short time ago found out that my son had DS (now 3 mo. old) this book is wanderful "Babies with Down Syndrome- a New Parents Guide". by Karen Stray-Gundersen. everyone here is so helpful and there is so much info. and everything your feeling is normal, we've all been there or are going threw it now. looking forward to hearing more about your family. Hope
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Post by ValerieC on May 12, 2006 6:42:04 GMT -5
Ibby,
Congratulations on your 11th child! Your little one will be here before you know it.
Remember your son is your son before anything else. The diagnosis is just that!
You'll find your dreams and aspirations for him will be the same as for your other children. You'll want him to be the best HE can be.
What a wonderful, grand adventure you have before! Enjoy your journey.
BTW, welcome to Unomas. Looking forward to getting to know you better! Valerie C
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Post by momofrussell on May 12, 2006 6:45:55 GMT -5
WELCOME!!!!! You have a couple kids I see! heehee... We are so thrilled to have you here so again, WELCOME!!! There are alot of wonderful resources, like books, other websites and groups, ect... anything specific you are thinking about needing? The book I bought while pregnant with Russell was "A parent's Guide to Down Syndrome, Towards A Brighter Future" by Dr. Siegfried M. Pueschel who is a wonderful doctor.... and I love the book! I did alot of reading while pregnant to prepare myself... I didn't find Unomas until Russell was 2. Enjoy the site!!! A.
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Post by caz on May 12, 2006 8:24:06 GMT -5
wow 11th child thats great congratulations. Welcome.My little boy is 2 down syndrome and blind in one eye,to me this site is a god send .
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Post by Pat on May 12, 2006 8:31:14 GMT -5
Welcome Ibby, Congrats on number 11. I always wanted a big family but I started late & married a widower, so we had 3 in less than 3 yrs. I think Ruth from Israel has 8 maybe, Ricky's mom. We'll have to get her moving LOL I didn't find out until after John-John was born. He smiled at me w/in the first hour ;D You can have the same joy as w/ the others. Don't be surprised if you haven't worked through all your feelings by the time he is born. You won't! It's a process, but I PROMISE it does get easier. I still have days now & then, but they are few & far between. You can read so much, Drs can tell you it's going to be like this or that. I'm here to tell you we at unomas21 have proved renowned drs wrong on all our kids are able to do. Let's see, now the important things. John-John & Victoria look like dad(did I not carry them for 9 mths, don't I get any credit), & both ground there teeth when they were little (like dad), Laura & John-John have the same stubborn streak, & all three only teethed on antique furniture. He's going to be a beautiful baby w/ or w/o medical problems. John-John was born in a birth center w/ a midwife & my DH delivering. He came home with us 8 hrs later & only went to the NICU a couple of days later because he broke out in a rash during genetic testing, medication I had taken because of previous group B strep. He did have a hole in his heart, but it was small & closed on it's own by 12 mths. He's a healthy 6 3/4 yr old boy. And yes he has DS, but he's my boy first of all! Pat
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Post by MB on May 12, 2006 9:06:12 GMT -5
Ibby,
Welcome and congratulations. I am one of 11 children, 6 boys and 5 girls. I have a sibling who is developmentally disabled as well as a child with Ds. And thus I have a HUGE WARNING for you.
Watch out for kindness, compassion, acceptance and off the wall humor developing in your household along with leadership, strong character and extreme self confidence.
Fervently pray for the unsuspecting kid who may inadvertantly make fun of your son with Ds. Have you ever run into an angry army?
Practice holding your tongue when child after child does something for which his/her character is praised. Do not accept congratulations. Those congratulations belong to the kid with Ds for bringing those traits to the surface in his siblings.
Buy a new dress. The day my son was born and diagnosed, five of my siblings were either President or a board member of five different organizations supporting children and adults with developmental disabilities. Board membership means fundraisers - a lot of fundraisers.
Love me, love my sibling. Don't worry about the errant girlfriend or boyfriend brought home. They will cut their losses and run. You will find yourself with a huge extended family of terrific people. Worry about feeding 60 people Easter brunch like I have to do.
Stop wondering why God gave you this child with Ds along with 10 others to raise. That will be revealed in time. My sibling was 10 years old when the typical friend of another sibling hit his head on the side of the pool, blacked out and sunk to the bottom. While the typical sibling tried to get one of three lifeguards to believe his story about his friend drowning, the sibling with developmental disabilities dove repeatedly trying to pull the friend off the bottom of the pool. A lifeguard finally responded and the child was rescued and revived with a new procedure called rescue breathing (1966).
Try not to smile when other mothers of children with Ds worry about who will taking care of their children after they die. Rest in peace!
But, do not allow 10 well meaning siblings to teach this child with Ds learned helplessness. That will lead to resentment. Create a vision, with the help of the other kids, for this child and stick to it. Our vision is for our son to have a job he loves, a social life and to live away from home. That will never happen if everyone is allowed to do everything for him. And it certainly won't happen if the family makes excuses for him.
Babies with Down syndrome tend to be very, very calm and sweet. Protect your heart. It will try to melt the first time he makes clear eye contact and his entire face becomes a smile.
Heartfelt best wishes.
mb
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Post by tigger on May 12, 2006 9:10:52 GMT -5
Hi. Wow, 11 kids, that is so cool! I would have loved to have that many but, given my age (44), I think I will have to stop at 4. We have had 3 long term foster kids though and if I hadn't had 3 miscarriages I would now have 7 kids. My youngest, Talitha, is nearly 6 months old and has DS. She also had an AVSD (heart defect) repaired at 4 months.
Another great place is downsyn.com forums. Lots of parents of kids with DS post there including expectant mothers.
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Post by Claire on May 12, 2006 9:52:37 GMT -5
Wow congratulations on number 11. I have 4 children with a huge age gap. Ron 29, Frank 24, Savannah 10 and Adam 8 born with Down syndrome. I guess if it wasn't for having my tubes tied I would also have had about 11 by now. ;D I had a tubal reversal at 34 and the product was 2 more wonderful children. We also knew at 5 months into my pregnancy that Adam was a boy and was Down syndrome. I did feel the same way you do. Sometimes I wish we didn't know so I could enjoy the pregnacy but other days I was glad I knew as we named him and felt closer to the child.We were suppose to name him Nathaniel but decided on Adam as in the bible he would be the first to show the world what he can do. ;D And let me tell you he is as joyful, happy, mischievous, stubborn and actually more sneaky then my other 3. ;D He will amaze you with his first smile and all the other first steps that we take for granted sometimes with our typical children. I would not change a thing. God gave us Adam and let me tell you that we have learned so much with Adam that it would be too much to write it all down. As for siblings, we did talk to them before Adam was born. My 2 older boys were in the room when both their youngest siblings were born. The only comment I heard when Adam was born was from my oldest then 19 years old " Boy he looks Asian with red hair" ;D To them it is no different having to play with Adam or his sister. And the same rules go for Adam as everyone else in the house. The only way to learn proper behavior and discipline is for Adam to follow the rules like everyone else. Remember that your little boy is jsut that ( a little boy) first the Down syndrome is just an extra special things God has given you to teach you love unconditionally. Welcome to our UNO MAS Family. Glad to have you here and let us know how things are doing. You can e-mail me at my regular e-mail if you wish at cladav@puc.net Just put UNO in the subject line.
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Post by wrblack on May 12, 2006 9:53:24 GMT -5
Hi, And welcome to Uno Land. Hope you like it. NDSS has a new (and expectant) parents package. And a new brochure for their new parent package. You could give them a call or could download the brochure: www.ndss.org/content.cfm?fuseaction=NwsEvt.Article&article=1558<< Published: December 7, 2005 NDSS is pleased to introduce a comprehensive guide for new and expectant parents of children with Down syndrome entitled “A Promising Future Together.” This new 40-page booklet, which is free to new parents, is an expansion of the smaller NDSS brochure by the same name. It is filled with information and resources to help new parents and their baby get off to the best start possible and provides reassuring answers to common questions on the minds of new parents, such as: How will Down syndrome affect my baby’s development? What is the best course to follow to help my baby reach his or her potential? How will this newcomer affect the rest of my family? “NDSS has been meeting the needs of new and expectant parents for more than 25 years, but this is the first time all the resources and information have been combined into a single reference tool,” says Jon Colman, director of educational services for NDSS. “A Promising Future Together” addresses topics in health care, early intervention, and inclusion for children with Down syndrome, and offers tips for parents on meeting the needs of their whole family. The booklet also includes a folder with health care guidelines and growth charts for individuals with Down syndrome. Affiliates and other groups can supplement the information by adding their own materials and lists of local resources to the folder. To order your copy of “A Promising Future Together,” contact the NDSS Information and Referral Center at (800) 221-4602 or info@ndss.org. Individual booklets are free to new parents and family members. The price for bulk orders (orders larger than 5) is $3.50 per booklet for NDSS affiliates and $4.00 per booklet for all others. You can download “A Promising Future Together” for free by clicking here or cut and paste this link in your browser www.ndss.org/media/pdf/2005_NPP.pdfTo download the Down Syndrome Growth Charts referred to in the booklet, visit: www.ndss.org/content.cfm?fuseaction=InfoRes.HlthArticle&article=603To obtain the Health Care Guidelines for Individuals with Down Syndrome, go to: www.ndss.org/content.cfm?fuseaction=InfoRes.HlthArticle&article=37 >> My favorite book recommendation for prego mommies is still Expecting Adam by Martha Beck. Wow, 11 kids. I thought 5 was a lot. -- Congrats and best wishes, Bob
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Post by meghans_mom on May 12, 2006 10:28:48 GMT -5
Helli Ibby - welcome and congratulations on the upcoming birth of your baby! I found out too while I was pregnant with my daughter (meghan, who is now 5) and yes, there wasn't much joy at first - she is my first child and all i expected during my pregnancy went out the window. For me, finding out before hand was the best thing that happened to me - because I needed that time to process the information, to find out all I needed to find out, etc I like the Babies with Down Syndrome: A Guide for New Parents by Karen Stray Gunderson. It's a good book for you family to read too, if they're interested. Otherwise you've been giving great recommendations from the other Unomasers above!
Don't drive yourself crazy - but if you have a chance look into what DS support groups are near you - get in touch with early intervention places, to see what is available -- not all parents like to do this right away...but it helped me. As others have said - your baby is a BABY first, the DS is secondary...don't worry about stimulating him every second of every day...of course you're busy but I'm sure you'll have lots of help with the rest of your children, that you won't have to worry -- play is important to every child and our kids are no different. just don't think that every second has to be spent as "therapy"...take the time to just be with and enjoy your baby...everything will fall into place. Best of luck to you and looking forward to hearing more from you. Laurie (mom to meghan [aka MM] 5 yrs/DS and matthew, 3)
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Post by ibby on May 12, 2006 11:30:22 GMT -5
Thank you all for the responses and warm welcome. I do appreciate it. I have ordered a few books this morning. Since I have very little time for reading, I appreciate knowing which books are more worthwhile.
I would like you all to know a little bit more about me. I was hesitant to disclose too much information at first....In another forum I belong to, a Chronic Pain forum, we have been warned about individuals who make up personal stories in order to gain sympathy from support groups like this. I was afraid like my story would certainly sound "made up"!!
I have been diagnosed with lupus. I also have an extremely rare kidney disease which mimics the pain of constant kidney stones. There is no treatment or cure for this disease, and very little research being done in this area, as there are less then 300 individuals in the world who are diagnosed with this disease.
So, with all this being said, my days are currently about constant struggle. Each day is a struggle to be a good mom, which is the most important thing in the world to me. I am trying with my whole heart to give these children what they need in order to fulfill what God wants for each of them. I want them each on their personal track to heaven, for if I haven't done this for them, nothing else I have done for them will matter or count for anything!
Some of the feelings I am dealing with now are about concern as to how this sick mother of soon to be 11 will find the strength somewhere to do right by this newest soul.
I don't know if any of you are dealing with circumstances even remotely similar to mine, or if you will have any words of wisdom for me. But it does feel better to express myself to others who can understand, even partially, how I am feeling. This feels like a wonderful forum. I'm very glad to have found you all.
May God continue to bless you!
Ibby
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Post by Claire on May 12, 2006 12:26:41 GMT -5
Glad you told us about all this. We as UNO MAS Family ( I always refer to this site as my family as I have no family except for my husband and kids) ;D we will be there for you no matter what your concerns are. And one thing you can count on is always getting an honest answer, and never being judged for how you feel. We have all had our moments at one time or another, as life itself is not always easy. My husband can sympatize with you I'm sure and I will show him your letter tonight. We have all walked the same walk that you will soon join. It can be a terrific walk if you let it be. You and God have worked hand in hand until now and the road will continue with Him holding your hand with the help of your friends here at UNO MAS. My husband as chronic colitis, chrones, and had part of his bowel removed because of cancer. But every battle has made us stick together even more and appreciate life. My husband is also always in pain because of his colitis and a rare form of arthritis called Ankelosing Spondiliits. He does also belong to a forum for chronic pain. Maybe the same as you. Hang in there and whenever you want to vent or just tell us about your day, their will always be someone here to read and reply. PS: Everyone here knows how I have abused this site to vent. ;D ;D And I plan on doing it again, it feels great after you have let it all out. Nothing is unimportant if it is important to you. Hugs.....
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Post by andrewsmom on May 12, 2006 13:07:51 GMT -5
Hi there!!! I'm Trisha, mom to 4 beautiful children. My youngest just turned 2 and has Down syndrome. We did not know ahead of time that he had DS. I'm glad you found this site, it really is an excellent place to learn, recieve support, and make new friends. Congratulations on # 11......wow...I thought I was busy with 4...LOL! I look forward to talking more with you soon!!
-Trisha
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Post by SuziF on May 12, 2006 13:43:06 GMT -5
Welcome Ibby ! I'm another of the "only 4 kids" group here...my youngest is 5 & has DS. She has 3 older brothers. The closest in age being just 16 mths older than she. There seems to be a cluster of us with extrordinary circumstances here~ you can't help but think it must be part of the bigger plan of things. Welcome to the family.
Suzi
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