New Nephew's Test Results Positive for Downs

Updated on September 23, 2010
H.M. asks from Lake Orion, MI
13 answers

My sister-in-law had a baby boy on Sunday. The doctors saw a couple signs of downs so they ran the tests and they just found out that it's positive.

Can anyone recommend good websites, books, etc that I could pass along to them?

1 mom found this helpful

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J.B.

answers from Atlanta on

Someone will probably post it here, but do a search of Mampedia for other Down's related questions and prenatal Down's results. There's a link for a site about a family who didn't know they were having a Down's baby until the baby was born.

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A.H.

answers from New York on

just do a search.... also call the town she lives in.. and ask for the board of education.. they can give you info on good places to talk to.. good luck.. her baby will bring her joy once she gets over the shock..

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V.W.

answers from Jacksonville on

I recommend you read this poem, and then consider giving it to your sister-in-law. I sent it to my brother (who's last name happens to BE "Holland") when their son was born.

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

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D.N.

answers from Chicago on

They can also contact the United Way agency near them to be connected with different agencies to help find resources.

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E.C.

answers from Detroit on

I'm not sure where your sister in law lives, but if she goes to the the National Down Syndrome Society Website http://www.ndss.org/ they have support groups listed by state and area. My son is a 2 year old with Ds and I know as hard this news is to get, but I can unequivocally say that the deep grief I originally felt has been replaced by pure love and joy. We are a better family because of my son, we are more accepting of other people and we rejoice in his every milestone.

Congratulations on the birth of your nephew, enjoy and love him.

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M.K.

answers from Detroit on

www.bandofangels.com
This is an excellent resource with links to support groups and more information; they also have products that portray the true beauty of people with Down Syndrome.

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S.H.

answers from Honolulu on

Do a Google search for "parent groups for down's syndrome children"... for the state they live in.
There are MANY groups.... and websites for Downs' Syndrome.
Joining a support group, can be very positive and helpful... because, they will meet MANY parents who can relate to them.

My cousin has a down's child... and he is a delight. He even participates in local plays and theater, and does quite well.

all the best,
Susan

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B.M.

answers from Detroit on

Congratulations on your new nephew!

I read a woman's blog whose daughter was born and tested postivie for Downs after birth. She has an amazing story to tell.

http://www.kellehampton.com/

Blessings to your family!

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K.S.

answers from Grand Rapids on

You have gotten some great resources to check out and there is so much information out there that at first it can be overwhelming. It can be hard to receive the news that your child has Down syndrome and there can be so many challenges that go along with it. i have 2 beautiful little girls with Down syndrome 10 and 8, and the challenges have been lessened with joy and fun, wonderful experiences and activities. There is so much that the kids can learn and do that I am amazed everyday. i am also in Michigan and am part of an association that has so much support available fot the parents and families. The things that Kim V listed are very good and go to www.woodbinehouse.com and check out the books there that are available, you can check out majority of them at the public library, but if you do want to purchase they often offer a sale in October for the Down syndrome awareness month. Good luck and God Bless your sister in law on her journey along with the rest of your family

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C.M.

answers from Detroit on

I'm not sure what county they are in, but there is the Band of Angels that has wonderful resources and I know some people involved in the resource and they are wonderful. You can find information at www.bandofangels.com.
Macomb county also has wonderful resources, along with the local school district. They have programs that start VERY early. My brother in law has Downs, and it is definitely a difficult road ahead, with a lot of hard work, but they are such a blessing to all they meet.

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K.V.

answers from Grand Rapids on

I have a 7 year old with Down Syndrome. We didn't find out until he was born and they ran tests. What an uncertain time. Is this their first child? He was our first and the feelings of devastation that we might never have a healthy child not to mention how overwhelming it is just to have a newborn were indescribable. (We now have 2 other children who are both healthy.) I suggest they find support somewhere - whether that's a Down Syndrome Association chapter or online or whatever. I found a Down Syndrome group on www.babycenter.com at the time that was very helpful, full of moms with great advice. I haven't been on it in a very long time though.

We read this book: Babies With Down Syndrome A New Parents Guide -http://www.amazon.com/Babies-Down-Syndrome-Special-Needs-... A word of caution though, in one section of the book they list out every possible medical issue ever associated with Down Syndrome. Some people read that and freak out. You have to remember that your child will not have every single issue. My son only has a couple medical problems.

I read You Will Dream New Dreams - http://www.amazon.com/You-Will-Dream-New-Dreams/dp/157566... AWESOME book of short stories from other parents of children with special needs. I liked reading about other people's stories - made me feel like I was not alone. There are lots of books out there like that - also read Sometimes Miracles Hide - http://www.amazon.com/Sometimes-Miracles-Hide-Bruce-Carro...

I also highly recommend Gross Motor Skills in Children With Down Syndrome - http://www.amazon.com/Gross-Motor-Skills-Children-Syndrom.... They should get early intervention services that include a physical or occupational therapist but I found this book helpful for suggesting activities to do to go along with the therapy. I taught my son how to climb stairs in just a couple days with the techniques in this book. Haven't read any of the other books like this (there's a fine motor skills one, communication, etc) but if they're like this one they would be good too.

Do they live in Michigan too? Michigan has Early On which is an early intervention program for age 0-3. They may also qualify for Children's Special Health Care (a Medicaid program that will pay for certain medical expenses available to people of all incomes with children with special needs). There are also many Down Syndrome Association groups.

Tell them to hang in there. The first year was difficult for us. It can be very overwhelming at first but their baby is more like every other baby than not.

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N.S.

answers from Dallas on

Check into the early intervention program at the local MRA. (mental retardation authority) The early intervention program assist children with special needs until the age 3. As the child nears 3 the MRA assist with the transition and provides a majority of resources. Also when you contact the MRA ask about programs such as: CLASS, HCS, ICF,General revenue, etc. These are program which provides quality services to individuals with special needs, but the waiting list are long but will help as the child grows and eventually becomes an adult.

I work for a MRA and I know a few moms who have children with Downs. Tell your sister her son will lead a very productive and prosperous life.

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