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Bridget
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| Posted: Aug 15 2005 at 8:24am | IP Logged
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Did any of you know during your pregnancy that you would have a special needs child? On Friday we had an US for measurement. Our baby has some odd measurements and is quite small. My Ob wants us to be prepared for a Down Syndrome baby or maybe some other problem. It also could just be a small baby. (I am really big because of extra amniotic fluid.)
We are pretty peaceful about this right now. Though, the waiting to find out is difficult. I'm about 37 weeks. There probably isn't much I can do to prepare since we don't know yet what we are dealing with. I was wondering if anyone had expereince finding out ahead of time or ideas for mentaly preparing ourselves.
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Bridget, happily married to Kevin, mom to 8 on earth and a small army in heaven
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Karen E.
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Dear Bridget,
I don't have personal experience with having a child with Down Syndrome. However, one of our goddaughters was born with Down's four years ago, and she has an older brother who also has Down's.
Of course you're right that there's not a lot to "do" in advance, since you don't really know what you're dealing with. And it could be that everything's perfectly fine. What a grace that you feel very peaceful right now.
One thing that comes to mind is that my friend had a lot of trouble nursing her baby. She wasn't strongly committed to breastfeeding anyway, and so she dropped it quickly because she was so frustrated. But babies with Down's tend to have weak muscle tone/weak sucking reflexes and so it would take some extra patience to establish nursing. I found this FAQ page from LLL:
http://www.lalecheleague.org/FAQ/down.html
Also, without dwelling on it, but as a "just in case" measure, you might check around locally to see if there's a support group for parents of kids with Down Syndrome. Such support groups can be valuable in sharing ideas on everything from nursing the baby, to early intervention with exercise, brain stimulation, etc. For my friend, the local group (which she started after moving here) was helpful when she just felt the need to compare notes, find encouragement or see how well some older kids with Down Syndrome were doing.
That's what springs to mind right now. I'll be praying for you and your family. Keep us posted.
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God bless,
Karen E.
mom to three on earth, and several souls in God's care
Visit my blog, with its shockingly clever title, "Karen Edmisten."
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Willa
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Bridget,
I didn't know when I was pregnant with Aidan that he would be special needs. I did know with Paddy (he is typically developing now, but was small for gestational age when born and we knew he was likely to have Aidan's birth condition and indeed he did).
Being prepared with Paddy, I focused beforehand on spending time with the older kids and dh and preparing them and the house to run a while without my direct input. If you are planning to start the homeschool year in September perhaps you could prepare things that the kids could do mostly themselves. But if all that was just a stressful addition to your last prepartum weeks, I think it would be more productive to just "hang" with the kids and DH in case you have to be specially preoccupied when the newborn arrives. That fills their emotional tanks and that was the part I felt most rueful about with Aidan, that the older kids sort of got shuttled aside without any real preparation (I didn't worry so much about DH). I would have read more, played more games, talked more and just snuggled more if I had known.
If you have a support system in your area -- friends, relatives -- perhaps it might be a good idea to find out who might be willing to help you after birth and get them lined up at least tentatively for meals, child care, mommy care and so on. If you don't need them much, so much the better.
So perhaps just the normal logistical things people do to prepare for a newborn, but just a little bit more so in case you have to spend some time in the hospital and/or with early intervention and that kind of thing.
About mentally preparing, it sounds like you are on the right track working to maintain your peace -- that you are in God's hands and so is the baby. If it's any help, our special needs children have brought us such intense joy that it is way more than worth the sorrow and worry their struggles have given us.
That isn't even exaggerated -- of course we pray and hope for healthy, "typical" children just as we do our best to heal medical and other illnesses, and I will pray that your baby is fine, but a special needs child comes with special gifts from God that it is a delight to see unfold in their lives and those of the family. Really! I know it sounds like a platitude but it comes to reality in so many unique and beautiful ways in the actual circumstances.
Also, it helped me to keep in mind with my two,that the baby could have been born to a family that wouldn't have the resources or will to try to nurture and support him. I am not saying we are a super-family but that we would have the heart and will to welcome a "different" baby and knew that God would do a lot to help us out. Not every family today has those those gifts, which of course are faith, hope and charity supernaturally infused and don't come from us personally. So I felt that we had a task straight from God and that He would take it from there.
Lastly, perhaps a novena to the Holy Spirit or Our Blessed Mother or to the Sacred Heart wouldn't come amiss -- though that didn't occur to me with Paddy, I wish it had and will definitely be praying novenas for my grandchildren in their immediately prepartum days!
I will be praying for you and the precious little one and for your family.
By the way, I hope that this doesn't come across sounding like a big checklist of "to dos" that are a burden and stress. To me, preparing heart and will to rest in God are the key and the other stuff isn't necessary, but might be useful IF you have the energy and the network resources.
Sorry this got so long!
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AMDG
Willa
hsing boys ages 11, 14, almost 18 (+ 4 homeschool grads ages 20 to 27)
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Elizabeth
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Dear Bridget,
Blessings to you my dear! I have no advice to offer at all. But I do have a perspective to share: God has been preparing you for a special needs child all your life. Your whole childhood has been such a preparation. Your mother has been and will be your mentor. If, indeed, you are so blessed with a very special baby, you, of all people I know, can rest in the assurance that you have been chosen. My heartfelt prayers are with you.
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Elizabeth Foss is no longer a member of this forum. Discussions now reflect the current management & are not necessarily expressions of her book, *Real Learning*, her current work, or her philosophy. (posted by E. Foss, Jan 2011)
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Bridget
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| Posted: Aug 15 2005 at 1:30pm | IP Logged
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Thank you for all the kind thoughts and advice.
Karen, I'm so glad you told me about nursing problems with Downs babies. I think not being able to nurse would be especially devestating. that would be something to get help with right away.
Willa, a novena is a great idea. We can pray it as a family for the baby. Your post didn't sound like a checklist but it did have some helpful things to think about. Actually, I could use a checklist. I love checklists. And when there is a problem I like to DO something about it. This waiting thing is a big challenge for me. I guess it would be for anyone.
Elizabeth, your right that we certainly have the experience to handle a special needs child if that is what God sends us. Not only did my parents adopt many special needs children, but Kevin and I both worked many years in special education. Still...
We are willing to embrace God's will for us. We are also trying to not let fear dominate the end of this pregnancy. At 40, it could be my last so I'm still trying to appreciate all those kicks and squirms inside.
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God Bless,
Bridget, happily married to Kevin, mom to 8 on earth and a small army in heaven
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mrsgranola
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Bridgett, I don't have any real words of wisdom to offer but I'm praying for you all.
I have a friend here who was told twice (2 different pregnancies) that the baby had Down's but the babies were both born normal. Just shaped like their Dad from the get-go... I guess I'm just trying to say what you did about not letting fear get the best of you.
Love,
JoAnna
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mom3aut1not
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Bridget,
I didn't know for sure that Jospeh would be disabled. I did know that there was a 1 in 3 chance that he would be disabled. The only advice I can give (since I have no experience with Down's Syndrome) is to relax as much as you can, allow yourself to feel sorrow without guilt while you offer up the dreams you had, and to enjoy the child you have. And oh yes -- get whatever help you need for breastfeeding. I think breastfeeding is even more important for special needs babies.
In Christ,
Deborah
Mother of Lisa 22, Katie 19, Kristin 17, and Joseph 5
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Molly Smith
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Bridget, there is a beautiful article in this week's People magazine (yes, I read People, my mom gave me a gift subscription and I have to sneak away privately to read it, confession over) about a family with 22 children, 18 of whom are adopted, most of the adopted children have Down's Syndrome. The family is in Atlanta, I think, and even homeschool at least some of the children. Anyway, the article portrays the incredible love and joy this family has found in all of their children. It is worth buying the magazine this week, or I guess the library would have it, to read this article. (As an aside, the Torres family story is given a full page and pictures in this same issue.)
My prayers are with you and your family!
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Molly Smith in VA
Mom to seven beautiful children, ages 1-14
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Willa
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| Posted: Aug 26 2005 at 5:31pm | IP Logged
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Bridget, any news? How are you doing these days? Thinking of you....
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AMDG
Willa
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4Real Forums : Special Blessings
Topic: Preparing for a special child
