Down Syndrome Mamas

[Star Baby]

Hello!

wow...i've been receiving mothering magazine and checking these boards for over a year now and i JUST found this forum! i'm so excited about it. i've tried a few of the ds boards that are out there in cyber space, but i've never really related. i think that's because my main goal with my daughter (almost 14 months) is to accept her. so much of what i see falls under the 'how can i make this child into the typical child i wanted' category. i don't mean to step on any toes here...but that's just not the way i want to live.

but then there's the other side...i'm a person who is constantly battling the depression and aniexty of having a child with down syndrome. all that she'll have to face...all that she brings out of other people who have no knowledge of her or ds. it's hard. when i have the perspective that i think is best, i don't care about all of that. most of the time i see her as a child. nothing added or removed. it's mainly when i interact with the majority of the human race that it becomes an issue you can see how that might get me down. how do you deal with the outside stigmas and the prejudices? what are the thoughts that get you through? i know that being the mom makes me sensitive to every glance or comment that could be misconstrued...but i know i need to move out of this place...because the rest of the world isn't changing.

anyway, thanks for reading! and i look forward (very much) to getting to know other natural mamas that looove their babies with ds.

~ star baby

[peggy]

Welcome star baby!! I'm glad you found us!

My DD has dwarfism (she is 5) so I do know what you mean about "lookism" I have had people , stare, point and laugh saying "look just like the Wizard Of OZ" It always hurts. But as the years have gone by I do get more used to it..I often smile and explain (briefly) my DD's condirion. Most people don't encounter dwarfs in their everyday life and I would hate for their only experience with one, to be a rude, upset Mama. I also know my DD is watching to see how I'll react..I don't want her to think it is bad or upsetting to be a dwarf and I want her to learn how to answer people as well.

I can't exactly say it's gets easier..but as the time goes by it is not on your mind every waking hour like it is when they are younger

As I watch my DD go about her day happy and content and sure of herself..I am inspired by her spirit and know everything will be OK.

You are right ..we can't change the world ( at least not everyone) but we can educate those around us, so that our children can go out in to our communities and get the same respect any other child would get.

Blessings to you on this bumpy, exciting journey.

peggy

[Star Baby]

hey there...

thanks for the reply. thanks, too, for the encouragement. it seems like 'time' is the answer in so many cases. i appreciate it and i hadn't thought that my dd will be looking to see how i react to gauge the situation...that's so true. thanks.

~ star baby

[Els' 3 Ones]

Hi.

My 3rd child, Duncan, is a 4yo boy with ds. He is very healthy, happy and outgoing. His biggest delay is speech...........has a few words and quite a few signs. But I do get very frustrated and, at times, depressed with how hard it is to communicate to each other.......

While the "lookism" bothers me a little, I find I need to control myself in bragging him up to everyone!!! I want everyone to see he is just a little boy not down syndrome..............

Do you have other children star baby?

El

[Star Baby]

hi el!

sorry it's taken a bit to write you. no, i have only one little sweet girl. she may be joined sooner than later with the unexplained baby craving dh and i have been having as of late.

i'm sorry that speech has been frustrating for both of you. there is a great doctor who specializes in late talking children that we are working with. his website is www.jamesdmacdonald.org

check it out and let me know what you think.

i know what you mean about wanting everyone to see your child as a person and not 'down syndrome'...there is so much testing out there to make sure you NEVER end up with a kid with ds...it's crazy how much my mindset has changed. i forget that the rest of the world is still afraid and needing education sometimes. i've been trying to write a bit about my experience so far. have you read much of the literature out there by parents?

good to meet you!
star baby

[SUSANNAHH]

hello, so nice to find a down syndrome forum in mothering! i have a 9 month old ds with down syndrome. we are currently having lots of struggles with weight gain he has been 10 lbs for a few months now. he is solely breast fed, i have been trying a bottle and spoon and he either is uninterested or can't quite do it with his tongue. his speech therapist recommended we begin these oral stimulations. so now the doctor wants us to supplement. anyone know of any god formulas? i have only found an organic one for 12 months and up. also any suggestions on feeding successfully? i have heard of a tube that can supplement along with breast feeding, anyone know anything about this. I have decided i will ask people everywhere and will eventually find that technique or tool that he will accept!

as far as lookism goes i have not really experineced it yet because he is so young, but i know it will happen and i am trying to figure out how i will deal with it, i can i can't really figure iitout untill it happens. I keep looking at all of these special needs parenting things as challenges that really result in all of us becoming stronger and gaining more knowledge.
thanks to all of you for being here!
xoxo
[whenyou meet what you're afraid of you find out what you're really made of-everything but the girlQUOTE]

[Jish]

I have known several downs children in my life and every single one of them were beautiful. I have to admit that when I see a downs child I think about how lucky the parents are to have such a wonderful, loving, caring child, not what a burden it must be. I don't know the struggles that are faced, and none of the children I have known have had severe downs syndrome. They have all been able to function relatively well with help. My step sister is mentally retarded, though she doesn't have downs (she is 33, but functions at about an 8 year old level.) She is one of the sweetest people one could meet.

While I don't know the struggles that you encounter, I hope that you are able to find the joy in raising your special children.

[Els' 3 Ones]

SUSANNAH,

Please stick with bf. It will benefit your child immensely. Better immune system, higher iq, strong oral motor. Just to name a few.

My son, Duncan, had a very weak suck and we had to use a finger feeding tube. That worked like a charm!
Here are some La Leche League links on subject:

http://www.lalecheleague.org/NB/NBSepOct02p174.html

http://www.lalecheleague.org/FAQ/premimportant.html

I also rec speech therapy. Your state should have an Early Interventions program that you are eligible for and therapy is available thru that.
Please feel free to pm me if you have ???


Also, down syndrome children have a completely different growth chart. Did you know? My idiot (former) doctor did not............ They typically put on weight slower. Even more so if there are heart probs.

here is a weight chart:
http://www.growthcharts.com/charts/DS/charts.htm

El

[SUSANNAHH]

El, thank you for your breastfeeding encouragement. I am meeting with a local lactation consultant in a couple of days and she is going to help me try a supplemental nursing system with breast milk, i feel very hopeful about this. I am also going to check in with my son's speech therapist for suggestions about spoon feeding him, the lactation consultant recommended avacado if he'll eat it since it is loaded with good fat!
wish us luck!
Susannah

[Star Baby]

hey susannah,

how is the breast feeding going?

[SUSANNAHH]

It is going well thanks. He has gained 11 ounces since last week, I am pumping between feedings and taking a couple of herbs. He is sleeping better at night and happier. I also finally received a call back from a feeding specialist that i have heard fantastic things about and am hoping to meet with her in regards to him starting to eat more successfully with spoon feeding. It is amazing how much support is available when you start to seek it out. I just can't wait for him to become a plump baby!

[SunRae]

This is going back to the original post: I have an 8-month-old ds with DS and feel just the same way you (Star Baby) do about thinking of him as just "a baby" until I am out in the world and am reminded.

I was in the grocery store the other day and the clerk kept on saying to the bag boy, "look how well he's sitting in the cart! I can't believe it! He's just sitting there so well!" Like it was some kind of a miracle; like Sam was a newborn or something. I guess she thought he was very young because he is underdeveloped, with his skinny legs hanging out of the cart. I didn't tell her that he has DS or that he is in fact 8 months old; I just didn't want to get into it with her. I know this incident is nothing compared to what people may do and say when he is bigger and his Down's becomes more obvious, but it is the kind of thing that makes me worry about all that is to come for him.

My best advice is to not let yourself dwell on the future or what *might* happen. I've heard some pretty great stories recently about acceptance of kids with "differences", you just never know how things will be. I've had to train my brain to stop the thoughts in their tracks when I start to worry and get down about the world's attitude to Sam in the future. It helps that I have a dh who never worries about possibilities and always reminds me to live in the present and just enjoy the incredible, amazing, adorable boy that Sam is.

p.s. Just to let future posters know not to "correct" me: I am going to periodically refer to DS as "Down's" because I really don't like this North American trend of dropping the apostrophe S from syndromes/diseases/conditions/etc. If I ever "discovered" or catalogued something in the medical literature and it was subsequently called "Rachel Disease", I wouldn't like that one bit. It is still called Down's Syndrome (and Alzheimer's Disease, etc.) in Britain, which is where my folks are from, so that's the excuse I'm sticking with!

[Mama Bee]

In keeping with the original post... I, too, feel I'm constantly on my guard, waiting for that comment or look or something else unkind directed at my child. I am trying to let it go though, because even though I am CONSTANTLY worried & looking for it to happen it NEVER has. People are always so kind and outgoing with my son (he's 18mths, btw). I don't go out of my way to tell people that he has DS like my husband. If someone asks, I will of course acknowledge that he does indeed have DS but no one has ever really come right out and asked either. I don't know... I think I always expect people to be more ignorant and hateful than they really are or maybe I'm just lucky. Until recently, I avoided new social situations and stayed home alot to avoid the unplesantness I assume we will be confronted with but I am trying to get over it and quit shielding myself from imagined slights. My dh and I had a conversation recently wondering what my reaction will be the first time I am confronted with ugliness directed at our son.... I get this mental image of me hurtling across a room with my eyes bulging, my hair flying and my hands wrapped around someone's neck.... but then again, probably not! ~ Brook

[chrfath]

Wow, I am so glad to find this forum. Our DD is almost 5 months old(on the 14th). She had open heard surgery on July 23 to repair her AV canal.

She has been exclusively breastfed. Since her surgery she is doing great.

I am currently having some issues with starting solids. They tell me to start and I don't think DD is ready. She can't hold her head up, sit unsupported, and she hasn't doubled her birth weight.

I am also feeling very apprehensive about using early intervention. I would like to just work with her ourselves and not worry so much about what she isn't doing that she "should" be.

Veronica is the sweetest little love of a girl. I think she is too young for people to notice yet. Except that she is the size of a newborn.

Anyway...I am glad to have found a natural place to discuss issues about my special needs babe.

[joesmom]

hey, i had to stick my nose in here to say i totally agree with jish, who said:

I have to admit that when I see a downs child I think about how lucky the parents are to have such a wonderful, loving, caring child, not what a burden it must be

there was a little girl with ds in my bible school class, & my best friend has a friend whose 12 yo son has downs. both are SO sweet & adorable; & talk about FUNNY!

most of my knowledge of down syndrome comes from the show Life Goes On that starred Chris Burke. remember that? i thought that was such a great show & chris seems to really be an activist for people w/ ds.

i am glad this space is here for you mamas. my friend's friend was talking to a group of HER friends : , about their kids & their accomplishments, one of the women actually APOLOGIZED to her. she said, don't apologize, because I feel sorry for YOU! her son is a joy to her, just as your kids are to you. just as joe is to me!

[wemberly]

chrfath,

I think your instincts are right concerning the feeding of your sweet dd. Hypotonia can make eating a real challenge. Lots of typically developing kids start on solids much later--I'd start when it feels right or when your sweet little begins to demand a spoonful as well!

Before I became Elliott's mama and started our own journey with Early intervention, I was an EI provider for many years. Is there anything I can tell you about EI to allay fears, etc. I won't try to change your mind if you feel that dd isn't ready, but perhaps I can give your more information about EI services, and the expectations you can have?

Feel free to get in touch with me, or ask me things here.

[Mama Bee]

chrfath,

Like wemberly said, I won't try to change your mind. I will, however, share our experiences with EI. Andrick has been receiving services through EI since he was 6 months old. All of the service providers come to our home & work with Andrick in his "natural environment". Although I have a background in education I do not have a physical/occupational/speech therapy or early childhood background. I feel on most days I learn more from the therapists than Andrick. I have learned so much from these wonderful, wonderful women about how to support Andrick in his quest for mobility and speech. We view EI as a resource for our family. Both my husband and I believe that we are and will be (for the forseeable future, at any rate) Andrick's primary and most important teachers but he LOVES having different adults to play with and adore him. I LOVE having someone with expertise in the things I know nothing about available 24/7 to answer my questions and help us solve issues that develop as Andrick gets older.

Way to go on the breat feeding!! Take care, Brook

Oh, I also think wemberly is completely correct about solids.... go with your instincts and what feels right for your baby!

[SunRae]

I, too, am very happy with the EI services Sam has received. I feel that it has been really beneficial for him. It has been great for me too, because I find that all the things the EI people suggest I do with Sam are great fun for him, and consequently for me. And I feel so good knowing that I am helping Sam maximize his potential.

[SunRae]

I, too, am very happy with the EI services Sam has received. I feel that it has been really beneficial for him. It has been great for me too, because I find that all the things the EI people suggest I do with Sam are great fun for him, and consequently for me. And I feel so good knowing that I am helping Sam maximize his potential.

[phoe's mom]

New to group

I'm so glad to find this group. I don't have a ds child myself, but my daughter's best friend's mom just birthed a ds girl on T'giving Day. This is their 10th child (1st ds) and I'm hoping to provide an avenue of support and acceptance to them for her. I hope they can find a support system that will help them not see the baby as a "condition" or anything less than the blessing she is. The attitude of this group is amazing!!! If anyone can direcgt me to other positive support for ds children, I'd appreciate be'c I want to educate myself my children but don't want to pass on negative, pigeon-holing, "well that's all that can be done" kind of garbage to anyone. That said....

Chrfath - follow your instinct. For "regular" children, 5 months is too early to start solids, really. If you don't believe that is in Veronica's best interest, then don't do it. My 18 month-old has managed just fine with 99% breastmilk. She began showing interest in food around 12 or 13 months, but only eats a little bit and even then, only raw fruits and veggies. Mashed avacado was the first thing she ever had. The most she'll eat in a day is a whole pice of fruit and a handful of raisins and ground almonds. The rest is momma's milk.

Peggy - When I was young, there was a girl with dwarfism a few grades below me. She was very popular among her peers and everyone adored her. I felt twinges of jealousy that our playground times were different so that I never had the opportunity to meet her and get to know her. Tina had a great self-image and drew everyone to her with her beautiful inner-self.