Downs Syndrome

[tikkipoo]

I have a co-worker that just had a baby with Downs. I was thinking of getting her a nice book, maybe something inspriational, to help her through. Do any of you have any suggestions?

 

[SueM in MN]

I am going to move this thread to the disABILITIES Community Board, where it will be on topic and hopefully you will get more replies.

To start you out, here are some suggestions.
I have seen this one:
I can. Can You? It's a book for parents to read to their child and features pictures of infants and toddlers with Down Syndrome.

I have not seen this book, but it looks nice:
Gifts: Mothers Reflect on How Children with Down Syndrome Affect Their Lives

I have also not seen this book, but the reviews I have read about it were good:
Road Map to Holland: How I Found My Way Through My Son's First Two Years With Down Syndrome

www.woodbinehouse.com has some nice books on all sorts of disabilities. Many of their books have reviews, so you can get a better idea about the book.
Exceptional Parent Magazine also has a good online bookstore.

I think you are a good friend to want to try to find a book that will help your friend as she adjusts to her new reality.

 

[HopperFan]

As the parent of a child ( now 24) with Down Syndrome and having been involved with groups who do initial contacts with new parents...........my advice would be to treat this baby as if you would any other.

I appreciate you wanting to the do whatever you can for your friend. While I had no adjustment issues when he was born I saw many parents who did. Receiving a "special" book may not necessarily be well received. It may be interpreted as a consolation prize. When she is ready for those books, she will get them.

I think most just want their baby to be welcomed with joy and excitement just like any other baby. I suggest you do whatever you would normally do and maybe just alittle extra. A really cute outfit (Disney of course ) and then maybe something that would be good for the baby but not received in a negative way. Colorful and tactile toys are a good one at that age, they will want to encourage reaching, grasping etc.

And be there to visit, hold the baby, talk to the baby, tell her how beautiful the baby is. Many friends will back away, many will send a gift but not visit. If you are comfortable and loving towards her baby, that will be the biggest gift of all. Your comfort may also give her the opportunity to talk about the baby, her fears, her plans etc. I remember having family members that I couldn't even talk to about that stuff and it hurts. I know she is a co-worker but you may be just far enough removed that you could be someone she could talk to alittle bit at the beginning until all the family jumps in with their support.

 

[tikkipoo]

Great advice! Knowing exactly what the right thing to do is hard sometimes. I think I will go that approach. I appreciate your help.

Tania

 

[SandrainNC]

My oldest has Down syndrome and I agree with the other poster. At first I did not want to see or read anything about Down syndrome. It took me forever to look at the pamphlet the hospital gave me with Chris Burke ("Corky") on the front. I really appreciated people doing the normal things that people do when a new baby arrives. Cards with congratulations, little outfits, that type of thing.

You are very nice to want to help your friend.

Sandra

 

[SueM in MN]

thank you to the 2 posters with experience.
That was not something I had thought about.
I know someone who had a child with Downs (I didn't know her until after her DD was older) and she said the hardest thing was people not even acknowledging that she had had a baby.

 

[Forevryoung]

What about writing her a note and telling her in it that she can pick the afternoon/evening but that you are going to come over, put up a few loads of laundry, bring some dinner for her and her husband, and spend time with her and the baby (maybe she can even take a nap in there!)

Make sure to bring a meal that includes leftovers!

 

[HopperFan]

thank you to the 2 posters with experience.
That was not something I had thought about.
I know someone who had a child with Downs (I didn't know her until after her DD was older) and she said the hardest thing was people not even acknowledging that she had had a baby.

Unfortunately, that is very common. I hate to compare but it's like when someone finds out you have cancer or you have a family member who has died, they don't know what to say so they just say nothing at all. Or they send the obligatory card but don't come by anymore. There is no reason to say anything to the new parent of a baby with Down Syndrome than, "Congrats on the birth of your daughter/son. They are beautiful." Do all the normal new baby things.

Be sure to visit in person when they are ready, touch the baby's hand or ask to hold them. Show them you are not afraid. If there is special instructions they will tell you. At that point in time it's just a baby with some extra genetic material The parents may be absorbing so much information, trying to dispel so many fears... give them the opportunity to feel like this is a wonderful addition to their family, because they are

My family has always teased me that my son was born so that I will always have someone to go to Disney World with.......24 years ago that seemed alittle silly, but my buddy and I go twice a year now without the rest of the family

Forevryoung's idea is great too.

 

[ireland_nicole]

Our DD didn't have downs, but was born very early (28 wks) and was "medically fragile" - I hadn't thought about it at the time, but only one friend said Congratulations! and brought the cutest Gymboree outfit, w/ matching blanket, it was pink stripes and... sorry, back to topic. They also got us a book called On the Day you were born. Nothing special needs, just noting that every child is so special, the universe notices. After a lot of blank cards and flowers, it was different enough that I still recall it w/ happy tears 8 years later. Good for you for being the friend that says, Congratulations, you are a mommy of a beautiful baby!- and means it.
Nicole

 

[SandrainNC]

My family has always teased me that my son was born so that I will always have someone to go to Disney World with.......24 years ago that seemed alittle silly, but my buddy and I go twice a year now without the rest of the family

That is so cool!!!

Our DD didn't have downs, but was born very early (28 wks)

My oldest was also 2 months early!

Sandra

 

[mechurchlady]

It is nice to be label free and maybe you could give her a book of inspirational stuff geared to new moms like Chicken Soup for the New Mom. How about some nice home spa products like scented candles and soaps. If she likes something like chocolates then add that.

Personally I do not want a book on dieting, celiac, or arthritis. I want something like Chicken Soup for the Soul. I cherish the inspirational books I have received that are for everyone but tend to trash anything about dieting. That is how I feel about labels and see the downs syndrome as a label.

 

[ecki]

My daughter has Down syndrome. It wasn't diagnosed until 2 weeks after birth. My DH and I had completely opposite reactions upon hearing the news. I went out and got every book from the library, spent hours on the internet and joined message boards (which I still post on every day). My DH just wanted everything to be "normal". We're still that way. DH doesn't do any "Down syndrome" events, while I'm very active in our local group, pushing for disability awareness in the local school district, doing Buddy Walks, posting online, etc. I'd say just follow the lead of your coworker.

 

[tikkipoo]

These are all wonderful ideas! You guys are great!

No worrys about being shy of the baby...a baby is a baby... I just want to kiss'um! I guess I am a lucky one who doesn't feel nervous about differences with people. Whatever the difference might be, color, ability, size, whatever. I work very hard at setting my DD up with a good example for things of that sort.

 

[MandM-Mom]

I agree do everyything you would have done for any of your friends that just had a baby. I was real emotional about the realization that my daughter had down syndrome in the first few months.....I just wanted to enjoy her and not be constantly reminded of what obstacles we would face in the future. Its a year and a half later and it is much better now, but it does take time, some days are better than others.

 

[RACHELSMOM1]

Just be the friend you are - the baby is special, just like all babies. Rachel is such a joy, and everyone congratulated us when we adopted her - just that we had adopted a baby girl. Our friends accepted her with open arms, and they did not care whether she had special needs. Our friends were rejoicing with us on adopting a baby, and that was special.

 

[PatMcDuck]

My son with Downs is now 18. I really appreciated people who came to visit, and who acted normal, but did ask how I was doing, and acknowledge the situation (verbally not with a special book or gift).

This might be ME, but one thing really made me NUTS. That is people who said things along the line of "God does not give anyone more than they can handle". Hmm, this is hard to explain. While well intentioned, this made me angry after awhile. People seemed to like to say that, and move on quickly back to their "normal" lives. I felt like it made the person who SAID it feel better, not me. I felt like, you mean if I was not so "wonderful and strong" my kid would be healthy? I guess I should add that I was in shock for a long time, my world was upside down, I did not FEEL as capable as people liked to say I was.

As a double whammy, I now have a daughter with serious health issues (she is now 16) and people say it to me all over again.

 

[brenalexacamp]

my baby is going to be 15 when we go in may! just me and him!!
my best friend invited me to go with her family and my husband tod me to go-bren LOVES it there-and I love to see him so happy and forget about all the red tape at school and therapy and the "normal"people.

I have a feeling me and bren will be taking a lot of trips together.
we went in aug with my sister-2 years ago my older kids wanted more adventure-so my husband took them and me and bren perused the park just us-I had a bal-lI got to have him all to myself.


It is hard-as a newborn-you are so afraid of what will be-and all I could fixate on was who was going to take care of him when we are gone?

you grieve at different times for different occaisions-I still cannot do 1st birthday parties.

we had 2 babies born within a month of each other and all i heard was how cute the other baby was-well my baby was cute too.

you'll find out real quick who supports you-
siblings go through a grieving proccess at different times too.

but every accomplishment is magnified!
i hated having his 3 and 6 month pictures taken-he looked so R word(which is never to be allowed-it is considered the F word)!

Now I can look at them and I want to squeeze him!!

I couldn't look at teens with downs-I just wanted to have my baby honeymoon for awhile.

he was healthy-we just needed to set up early intervention--

A good book is I love you forever. I love you for always.

Just treat the new mom like she had a baby!!-cards, gifts, when you don't know what to say--SAY-I don't know what to say but I can listen!!


so many times people just dissappear. I found it hard to contact a support group first-a woman got my number and called me-so much easier-and they told us-we will carry you as long as you need us to.

we all pay it forward--

my aunt came over once a month to babysit so me and my husband could go to a supportgroup.

 

[LisaBi]

I think most just want their baby to be welcomed with joy and excitement just like any other baby. I suggest you do whatever you would normally do and maybe just alittle extra. ....

And be there to visit, hold the baby, talk to the baby, tell her how beautiful the baby is. Many friends will back away, many will send a gift but not visit. If you are comfortable and loving towards her baby, that will be the biggest gift of all.

SO TRUE! My son with DS is almost 15. The best thing anyone could do for me in those early months was treat him like any other baby, and not be scared to come around.

 

[LisaBi]

This might be ME, but one thing really made me NUTS. That is people who said things along the line of "God does not give anyone more than they can handle".

Also SO TRUE. The other one that really got to me when my son as a baby was "...but they are such happy children." Yes, that is generally true, but when it was said it as it that were the consolation prize, it really got to me.

 

[SandrainNC]

Also SO TRUE. The other one that really got to me when my son as a baby was "...but they are such happy children." Yes, that is generally true, but when it was said it as it that were the consolation prize, it really got to me.

I always laugh at this one. I'm like, no he's not!!!!!!!!!! He gets mad just like everybody else.

Sandra