How is life w/a child w/DS different (harder??)?

Rebecca - posted on 04/13/2011

Jaquelyn, I didn't look at this second page, so I thought my original question about the running didn't get there. I see your answer. Thanks! I never thought about having to lock a child in for their own safety before, but I guess that's what you have to do. I was planning to go back to work after my husband retires and the kids were out of school. Does anyone think that would be possible? If there is anyone reading that has teenage or adult kids w/DS please enlighten me. We don't need me to work now, but in the future it will be important. Nicole, I guess I do understand what you are saying that you just can't know so either have the child or don't, but for some reason I just have to get some sort of idea of how my life would change. I'm a pretty flexible, go w/life type who enjoys a challenge, but my DH tends to like his ducks in a row. Maybe I'm more concerned about if he could handle a child that ran off from him and needed door locks. You are right that our kids could fall, hit their head or break their neck and we would be caring for a special need child from that, but that isn't as likely as it is for me to have a baby w/a special need if I get pregnant. Thanks for all the info!

Rebecca - posted on 04/13/2011

Wow Jaquelyn, thanks for the info. I appreciate it! I don't know if I could get over a 6' fence like that. Is she running to get away from you and you can't reason w/her to stay w/you or is she just seeing something and determined to go get it? Also, why the locks? She doesn't like to stay inside? I'm very new to this, not having experienced it myself, just curious. We live in the country and don't have a fence or close neighbors, but I've never felt the need to lock the doors when we're home. If you don't mind my asking, what are the major differences in communication or respect for house rules, etc. between your oldest & youngest and Hanah? I guess I can understand easily the medical challenges, but I'm trying to grasp what behavioral or daily life challenges that are faced w/DS. How is it different than parenting a typical 7 year old. I was under the impression that there is just a delay, so maybe a child w/DS would act younger than their chronological age. However, my 3 year old stays in the house w/out me having to lock the door and stays w/me when I'm outside, so I think I'm not understanding something. My kids are ages 1 to 11, so I have a little parenting experience, but never have had a child try to leave the house or yard. I appreciate you helping me understand how my life would change.

Nicole - posted on 04/13/2011

So my reply to the comment that im not responcible must not have gone thrw.I QUIT my job to stay home with Cooper to benifit him.Im not lazy as u may want me to be.Y shouldnt I take advantage of the assistance that is there? The government takes out so much money that my husband works so hard and so long for. My other children still have everything they want and need so no one is hurting from having only 1 income. Cooper is hitting milestones and developing so well. I dont putt people down to sound inferior! U wanna trash me for speaking my opinion but its ok to speak urs cause u take full responciblity for ur daughter! Thats crap. Im speaking how I feel and im aloud to do so. U dont like my opinion dont read my comments.I was offended by Rebeccas question. I say have a child if u want one and dont let anyone elses story posotive or negative make up ur mind for u. I had no clue what we were getting into and didnt know till he was born. We new of risks and concerns but that was it. Thrs no need for u to be nasty and put me down-unless u have these inferior issues! I can speak my opinion and defend it. I can understand now what rebecca was doing just still beleive u have a baby no matter what the outcome may b. I want another one my life and baby would b at high risk but will I take that chance? only time will tell. As for now Cooper is benifiting greatly with the time we have together and u dont make me feel bad or guilty for getting the assistance he deserves for free because him thriving is my payment! I hope to be the bigger person and say this conversation w u needs to be done and we can agree to dissagree before real feelings are hurt. I as a mother have respect for myself and others not to cross a line when it is drawn.I wish u luck w Hannah in hopes her running issues wont run u down.Just a suggestion I once herd of this running thing-what about her diet. I know a gluten free diet does alot for moods w Autistic kids and thr behavior issues and know diet is big for some kids w DS. U can research it online.

Nicole - posted on 04/13/2011

As to other siblings handling new babies is always an adjustment. But as usual my bottom line is just have another and everything figures itself out. Cooper was in the hospital for 2months an hr away.Thr was only 3 days I didnt make it donw thr. My kids were 11 and 8 so they understood the importance of me being w Coop. I also have the best family and friends that helped w the kids brought us dinner,stocked our frezzer w meals and even sent money or gas cards. I have the BEST support system.Id make it home to go to thr sporting events. When he came home him I did all his therepy during the day when they r at school leaving my evenings free for them.Alot of therepy is also playing wich I just showed them how to work w Cooper and they enjoyed it and got to see how he developed.It is alot of work and time but u just work it out. I dont feel like anyone should question should I have another1 because it may have something wrong w it or could I handle it. U deal w life as it comes. U can ask 1000 people about what to expect w any problem a child might have but the truth is u will never know till u go thrw w it. Till it becomes ur life. I wasnt prepared and had NO idea of what to expect now I couldnt picture my life any different nor would I want anything to change. My kids still do all thr sports and go to freinds houses have kids over. Nothing has changed for them.I just adapt to everyones needs including my own.Dont let anyones life story of good or bad hold u back from having another one.Ur never prepared for life and what it may bring.Something could happen to ur healthiest child tomorrow that will change ur life forever and u will adjust to handle the change cause ur a mother and thats what we do.

Kelli - posted on 04/13/2011

I have a 14 year old & a 2 year old...my 2 year old has Down syndrome. Raising a child with special needs is a little different, but is really the same as raising a child without special needs. My son is 27 months today & is trying to walk, when a child w/o special needs would've been walking over a year ago. He has therapy twice a month to help him....early intervention is the key. He has had 3 heart surgeries, so that alone puts him behind. He's very verbal, responsive, & comprehensive. Since he has came into my life, I am more patient & understanding. Being his mother has made me a better person. The only thing I'd change about him is his heart condition...I wouldn't take away his extra chromosome because that makes him who he is & he's perfect just the way he is.

I noticed that you are concerned about health insurance. My husband has insurance through his employer, but it doesn't cover everything so we have a special insurance here in GA (& you may also have it where you live) that helps. It's a type of Medicaid. We make too much to qualify for straight Medicaid, most people do, so we learned about Katie Beckett Deeming Waiver through Children with Special Needs. Whatever your private insurance doesn't pay, KBDW Medicaid picks up, so you don't pay anything out of pocket. My son has had 3 heart surgeries & we haven't paid one red cent. Also, they pay for all of your child's therapy...everything. For the first 3 years of life, during RSV season (each state varies on what months are RSV season...for us it's October-February), it's best to get them Synagis shots every month & it covers those shots, too. I was a bit overwhelmed when I found out my son had DS, as I'm sure every one is. I have chronic pancreatitis & didn't know if I could physically handle a child with special needs. But God knew I could & He gave me the perfect son. He won't give us more than we can handle, although sometimes we wish He didn't trust us so much. :)

My oldest son was almost 12 when my youngest was born. He was the only child & the only grandchild on both sides. We all thought he'd have a hard time adjusting to having a sibling, much less a sibling with special needs that would require a lot of attention. But, to our surprise, he isn't jealous at all! We make sure to try to keep our lives as normal as possible. He is the best advocate for DS & his brother. What really helps is letting him help his brother...he sees that he's helping out & that is encouraging to him. And my oldest son plays sports, so we're taking him to practice & at each & every game so he sees that we love them both equally. II will keep you in my prayers & I hope I helped you.

Jaquelyn - posted on 04/13/2011

Rebecca~ We have tried to figure out what triggers her running, we have tried different therapists, teachers, kids, Hanah...we just have no answers at this time. Other kids I have know will go out windows and such too. We have always been big tent campers. I sleep in front of the door and my husband sleeps in front of the window. We take extra adults with us and notify everyone about Hanah's running even the local police beforehand. We also take her buddy the cow(harness) with us.

Jaquelyn - posted on 04/13/2011

Rebecca~ I think your situation is a bit different...Hanah is our middle child, my first is just 11 3/4mos older. It has not been easy for our oldest(Sydni) at times, other times she is brilliant with her(I think that stems from them being so close in age and sisters more than DS). When Sydni was a bit younger it was hard for her to understand why Hanah was not learning as fast as she was and needed Mommy's help a bit more often(it has been hard at times). As far as Hanah's "running" she has NO fear and once she has her mind made up she is GONE! For example...I took all 3 last weekend to the Children's Museum and we all had a great time( we were there for almost 5hrs), playing, laughing and creating(ugh I was beat...lol) We came back to Grandmas house(it was spring break and she has a fenced in yard) we all went outside to play. I had to come in for a moment to see what time it was(I had to go pick up grandma) when I got back outside(seconds) No Hanah(she loves small spaces and hiding on Mom is sooo fun). I looked it all the usual spots she hides in, my other 2 said she went inside. So I went inside to look in all her hiding spots there...No Hanah...I checked all the doors(locked) I checked all the gates(locked) I called 911. For the first time Hanah had climbed the fence(did I mention seconds) and was at a house 2 houses behind grandmas(heart failure). Hanah had been doing much better and had never even put a foot on the fence(I was a frantic mess). Hanah has her own aid at school just for safety reasons, she doesn't under stand danger. Thats why we must keep every door locked and an alarm on her door and a baby gate at the top of the stairs and a baby monitor in her room and the door handle off the basement door and the fridge locked and the cupboards locked I'm sure there is more but I think your getting my point. As far as siblings being enriched by special needs kiddos...I think my children are more compassionate to others(not each other at times, but again that's more of a sibling thing anyway) also the kids that Hanah goes to school with(we have started a peer buddy system in our school it is AWESOME, I highly recommended it) love Hanah, when we go to school functions the kids always come up at talk to Hanah, they all know her(I'm sure she has run into a few of their classrooms unannounced :)). As far as school goes we have had our fights and we have had great successes as a team! We believe our Faith has pulled us through our darkest times with Hanah and will continue...Hanah can breathe on her own, she can walk, she can run(and is very fast), she can laugh(Hanah has the most contagious laugh I have ever seen she lights up our world), she can see( the things you and I don't), she can hear, she can write, she loves to sing(on the potty at school she has been known to belt out a choirs of Jesus loves me for ALL to hear). So are we thankful that we have Hanah...YES absolutely with out a doubt, but its not always easy.

Heidi - posted on 04/13/2011

I have to say that I was concerned a little about how another kid would go over in my house, DS or not. My son is almost 13 and my stepson is 6, and is very needy in the attention department. My kids adore Liddy.It doesn't seem to matter at all that she takes time away from them, which is really just due to the every day caring for a newborn. We didn't see them much for almost two weeks (the first because I was in the hospital waiting to have her, the second because we were taking care of her) and they missed us (and we missed them) but I know my son was very understanding and just wanted us to do what we had to to get his baby sister home. The 6 year old can barely keep his hands off of her (which makes her a little crazy and mom too because of germs) and Caleb gladly pitches in if asked to (although he told me before she was born that he does NOT do diapers lol) They cheer for her every time she accomplishes something new and don't seem to even notice really that there is anything different about her. Caleb knows that she has a heart problem and DS, he understands that more than Ayden does. Ayden knows she has something wrong with her heart but I'm not sure he grasps at his age exactly what and how serious it could be. But they love their sister unconditionally! :)

Rebecca - posted on 04/12/2011

Jaquelyn, thank you so much for sharing. What exactly do you mean by running? She sees something and goes to get it and might run into the street w/out looking, or she runs away and you can't get her back? Also w/the door locks, is it that she doesn't want to stay in and would go play in the yard, or that she would leave the yard and just keep going? I'm so glad you didn't have to face the heart issue w/her. I feel deeply for Heidi and Nicole who have faced surgery. My DD's feet surgeries were scarry, but heart surgery so much more! Momto5 I'm going to have to check our ins. to see what the cost would be. Our daughter's feet surgs were free while we were active duty military, but I think there are limits for us now. Congrats on how healthy your little girl is! I have a friend that is 40 and preg. w/a healthy baby boy. I don't know if age matters as much as just what happens w/those genes that you can't control. It seems that many moms w/kids that have DS or other genetic conditions are in their 20s. I think any time you have a child anything could happen, it's just that drs at my age act like you are out of your mind for trying to have a child, like the baby couldn't possibly be healthy. Do any of you, or anyone else, have an opinion on whether you think your child w/DS has enriched your other children's lives or taken more from them (in time, cost, whatever)? So many people when I tell them I'd like to have another child say, "what if something is wrong w/the baby...how could you do that to your other children?" I happen to think that my other children would love another sibling, but I don't know if a child w/special needs would add or take away more to/from their lives. Anyone have an answer? Is it really unfair to try to give them another sibling if I can't guarantee that he/she will be typical? Honestly, I never even thought of these questions until people started making me feel guilty for wanting another child "at my age." Nicole, I know you'll have something to say :). It's funny because w/all my other children they weren't planned and I never gave it a second thought that there would be issues, though I did pray for all of them that they'd be healthy. It's all this outside pressure that's making me feel like I'm doing something "wrong" to have a baby at this time of my life. I don't know what the "right" answer is.

Nicole - posted on 04/12/2011

I CAN NOT beleive she on a waiting list-seriously 5 years! A couple days after he was born I filled out all the paper work for the medical assistance. He got it within 6 months and they back dated it to the day he was born being he was born w DS. I cannot beleive she isnt covered. I would go down to the office and speak to someone. It was very easy for me-I was persistant but it was simple. We actually had to apply for SSI also in order to receive the medical card. He is denied any SSI but is fully covered by the state. I would honestly consider looking into that. I cannot imagine the expence.Like I have said Cooper is my million dollar baby and then some. I got all the paper work I needed from my coordinator from the DS clinic at Childrens. Good luck and I hope u can get some good news.Thats a looong time. Especially when u see all the truely lazy people taking advantage of the system when ur family is deserving of some help.I will b thanking God tonight that it all worked out for us cause w-out the help I probably would have had to leave him at the hospital till I paid for him-lol! I feel bad u r on such a long wait-best of luck!

Momto5 - posted on 04/12/2011

Rebecca,
the costs of what insurance covers depends on what kind of insurance you have. Most do have lifetime limit amounts that it will cover. Usually there is an out of pocket maximum and that amount depends on your insurance as well. Medicaid is available to those with a disability such as DS regardless of what the parent's income is (its called a waiver) however, there usually is a waiting period. My daughter will have to be on a waiting list for the next 5 years or so, maybe longer, before she can get that as coverage. Early intervention programs can be great, in my state the cost of it depends on your income as it is based on a sliding scale and ranges from $0 to $100.
By the way, my little girl is very healthy, walking, and learning two languages.
Best of luck with the further research you will be doing on this. If you decide to have another child, you might find that your baby is very healthy with no issues at all. My sister was 38 1/2 when she had her 2nd child, a healthy girl.

Jaquelyn - posted on 04/12/2011

Praying for your beautiful baby girl...and strength for your family.

Jaquelyn - posted on 04/12/2011

Look! She may have a child that doesn't have DS or she may but I think it very good that she is asking for advice. I gave her my PERSONAL thoughts and don't feel as though I should be attacked for them. If you feel the need to make people feel inferior to ask a question and attack them for doing so...I feel sorry for you. I have three GREAT kids, yes one with DS and I don't need anyone especially any NEGATIVE people to tell me anything else. We have always paid our own way, its called responsibility we don't rely on the state to pay our debt.

Nicole - posted on 04/12/2011

Heidi, I will pray for ur lil girl. I hope all goes well. It was the HARDEST day in our lives.I was so scared.What kept me calm was the Drs. They do things like this all the time. For them its a job that they r good at.Cooper always goes to childrens for everything.I will pray for u also to b strong for her. And it is so much harder on the parents than for them.They wont remeber but u'll never forget.Just be prepared to see lots of tubes and ivys.Cooper had 1 in his neck, armpit and hand.Tube to drain and 2 wires for a temporay pacemaker.That was and still is the toughing thing we went thrw-and they dont prepare u for what they will look like when u see them in the CICU.So maybe ask. Again my thoughts and prayers for u and ur family may God b with u all! PS-his chest was A MESS but he has the lightest scar now.

Nicole - posted on 04/12/2011

So any1 responding negativley should respond somewhere else-ahh NO! This is a website for mothers w kids of DS and that includes me. I hear what ur going through but every child is sooo different.Whos to say that a child born w DS isnt going to b born healthy and only have some delay. I know a lil girl who is 3 potty trained and very smart.Cooper only 29months poops in the potty. Its all what u put into their lives that makes them who they r. Cooper was way over a million dollars and we didnt pay 1 cent. He is covered by the state being he has a dissability.All of his therepy 3-4 days a week have been covered.I feel like everyone is so concerned about the bad. Look at the good-u have a child! Cooper brings me stress and tears-so do my older kids w-out DS.He has opened my eyes to a whole new beautiful world that has brought my WHOLE family closer.I dont feel bad for Cooper and look at what he cant do. I see what he can do and what else he has to learn.My older kids put their dirty clothes in the clothes basket-so does Cooper.They clean their rooms so does Cooper.I treat him w love and nothing negitive.Never felt him has hopelessness only excited to see what else he will teach me!

Jaquelyn - posted on 04/12/2011

Rebecca~ My husband and I have been thinking of having another child also. We have 3, our middle with DS. Our Hanah is 7 now, and We have decided against it. She is not yet potty trained(so we have has 7years of diapers, wipes, pull ups and not she has gotten to big for pull up and now we are using Goodnights $$$$) However that is just our personal decision(please don't take that as what is meant for you, just us). I'm sure that Moms of all children struggle with that question, and yours is just a what if...I commend you for reaching out to find out the possibilities of having a child that needs a bit extra. Our Hanah is great, special and what not so before any one thinks they should respond to my post negatively you may want to post somewhere else that's not what this is for. This is to help another Mom. Our experience is that our child needed to stay in the NICU for just over 14 days(early + respiratory). Doc's weren't sure she would pull through(it was VERY hard). She was a consistent spit up baby(we tried all sorts of different formula, breast milk, and so many home remedies). Other baby stage stuff..We dealt with Croup and other respiratory issues many times a year(some resulting to the security guard at the hospital parking the car, to say it was scary is an understatement), she was not meeting any of the normal milestones that our oldest did, it was a bit concerning, but our family doc insisted there was nothing wrong with her just a bit early and she would catch up in a few years(at that point we had blinders on, we knew something was wrong just not wanting to admit it) We then got a new Doc and went through a lot of testing...DS but No heart issues Thank God! We got her into therapy right away(our ins only paid $10 per visit, the other $90 per therapy, per week, at times $90X3 week). Therapy was great for Hanah(I think at times now too great:)she is hard to keep up with now). She is doing great! Hanah is a "runner" I was 22 when she was born...I'm now 30 and her "running" lately has gotten worse I'm hoping that its a phase...we have brass locks at all of our doors, windows have to say locked. Hanah has been going to Grandmas house on some weekend(we live in a sub and cannot have a fence, its terrifying to be outside with her) . Grandma has a 6ft chain link fence( this past weekend we learned it's not good enough, even though we were outside with her)one foot in the fence and the rest was all upper body strength, and over. So now on to another idea. Being a parent is never easy, you must always be thinking. Our family has been very blessed with Hanahs accomplishments and at the same time the feeling of hopelessness and her short comings. Its been a long road with ALOT of smiles and giggles, but some days end in tears. We have a long way ahead to prepare Hanah for her future, she is strong willed, stubborn, smart, and has an understanding of the purest form, to look at the world from her eyes is so hard to describe but makes you strive to be a better person. Good luck to you and your family in whatever decision you make. Just remember aside from the cost, added stress and sleepless nights :) all children are such blessings to our world and our families when raised by great Mothers :)

Heidi - posted on 04/11/2011

We are facing open heart surgery in the very near future. It is scary. But the positive is that the doctors say at her age it will be harder on us than it will be on her. And once its over, Lydia's heart will work just like everyone else's. We're lucky. She's doing great so far! :)

Rebecca - posted on 04/11/2011

Thanks Momto5! That was very helpful. I have definately accepted that we need to be ready for a special child if we decide to have another, but it is scarry to think that my child would have a serious heart condition. I'm curious as to why that would be a financial strain. Isn't that covered under health insurance? I think you have brought up many things that I need to research further. Congratulations on your daughter. I hope she is healthy and thriving.

Momto5 - posted on 04/11/2011

Hi Rebecca,

My daughter is 20 months old and was diagnosed with DS at the time of birth. I thought I would list out some things for you.

1. About half of the babies born with DS do have heart problems and have surgeries with in their first year. A heart condition does hinder and delay even further their motor development. Once they get over the heart conditions they start thriving with their physical growth and development.

2. If your child does have heart conditions, you will bear a greater financial burden that you need to be prepared for. Having any child with a disability will increase your financial burden long term. Money magazine had a great article about it last year and suggested you plan a third retirement account because you will most likely have a financial dependent for the rest of your life.

3. Due to poor muscle tone in their body (including their tongue) it can be a bit more challenging to breast feed. Mine latched fine but leaked a bit when swallowing, she nursed for about 8 months. Feeding solids took more effort and energy, she had a little bit of a hard time with it but within a month was doing great.

3. Motor and cognitive delays are part of the territory so you will have to teach your child some things that you may have not had to teach the others, ie. rolling from one side to the other. There really is no average for reaching milestones with DS because so much depends on their health and some depends on how much time you invest each day. Having older siblings is a great stimulus.

4. Those born with DS do have tendencies for a myriad of diseases that you can read about online but who knows what that could be for you. This would be emotionally draining just like with any other child.

5. A child with DS will require more attention and depending on health issues, you may not be able to continue working and you need to determine how that will be a financial burden for your family.

6. I think a huge hurdle for most parents is that of acceptance. Since you are already accepting that you might have a greater chance of having a child with a dissability, you may already have passed that hurdle. I was not saddened by the diagnoses of my child at birth and I think that makes a huge difference in coping with any challenges that may lay ahead.

7. The reason for such a high divorce rate is that a child with a disability can place a huge strain on the caregiver (usually the mom) and may be emotionally draining. If you are continually stressed out and emotionally drained in addition to have to meet the needs of other children and do housework, your marital relationship can take the back seat and suffer and overtime it erodes and may end up in divorce. It is very important to support each other and nourish your relationship. I try to go on bimonthly dates with my husband. He helps me out with the children but most of the care giving is on my back.



Your life and that of your family will be forever changed. When you have a child with a disability, you enter an entire new world. You will meet others facing the same situation as well and your family as a whole, but more so your children, will learn to be more accepting of others, more patient, more

compassionate, more caring. Your life will be enriched in unusual ways and your heart and mind will go to places you never imagined.

Rebecca - posted on 04/11/2011

Nicole, sorry to have offended you. Not my intent at all. I still don't think you understand where I'm coming from. I know I can't prepare for everything, but I can ask questions and try to understand as much as possible what challenges people go through with a condition that my baby could LIKELY have. If I were in a high risk group for cerebral palsy I'd be asking about what that is like, just to try to understand it and be prepared. Could my child be born with no limbs or deaf, etc., yes, is that likely? No. But it is very likely at my age to have a baby born w/DS or autism, so that's why I'm asking for info. I'm trying partly to understand why in the world 90% of mothers who find out thier DS DX prenatally abort and 80% of marriages w/special needs kids end in divorce. Do I think raising a child w/any disability would be easy? No, not at all. That's why I'd like to have some idea of what challenges I would face in parenting a special needs child that are different from what I face in parenting a "typical" child. All the info you read just says kids w/DS face medical and cognitive "challenges." Well, okay but what does that look like in real life, not on paper. You and Heidi have given me a glimpse into what the medical challenges would be and for that I am very grateful. Heidi, thanks for being so detailed and encouraging! Both of you have beautiful kids and I appreciate the time you've taken to share w/me. I'd love to hear anything else you have to share.

Nicole - posted on 04/10/2011

Rebecca all Im trying to say is ur never gonna b prepared ur never gonna know enuf till u go thrw it.So if ur baby is born w no DS and later in life gets some disease-u werent prepared for that.U cant think-well should I or should I not have another one cause this one may have DS.Bottom line again-if u want another child u just simply have one and handle whatever happens after that.Thrs such a loong list of this could happen or that.U cant prepare for everything-u handle it as it comes.Im honestly offended that u think this way.Did u think someone was gonna say-oh yes its super easy and no harder than ur other kids! As w all kids comes hard times but we all handle them as they come.I would never ask-oh my next one may have clubbed feet-is it worth me getting pregnet or is it just to hard?

Heidi - posted on 04/10/2011

That was exactly the way that I took your question. Chances are your baby will have to have some sort of therapies, even if you are lucky enough to not have some of the other complications, like heart defects, that are common in children with DS. Our baby did great right off the bat with her heart defect but was receiving breast milk fortified with formula to help her gain weight and had a horrible reaction to it the night before we were supposed to bring her home and consequently stopped eating from a bottle. This led to an almost three week hospital stay for her and to me commuting an hour and a half each way every day to be with her. I count myself as fortunate that our family was able to work that out as many of the families of babies in the NICU with her were unable to do that. We brought her home on a feeding tube, which all of us hated, but it was necessary to continue her weight gain. We had to learn how to feed her through it (which wasn't hard) as well as how to care for and replace it, which we had to do often because she was an expert at yanking it out.We have been without it for coming up on 7 weeks now. We also brought home a heart monitor, which constantly went off @ a whopping 80 decibels when there was nothing wrong with her. We shuttle back and forth between doctors, and this last month has been the first time in the last 3 and 1/2 that we haven't been to see her pediatrician once a week because of some issue or another that we needed assistance with. She has extremely sensitive skin, and a simple case of diaper rash turned into a burn on her little bottom because of an allergy to any type of diaper rash cream, even prescription. The only thing that works is expensive and VERY hard to find in stores. I have learned that you have to stay on top of people to get things done. The hospital was supposed to have sent a referral to early intervention services who was then supposed to call us within 5 to 7 days after discharge. After almost 3 weeks of her being home, I called them only to find that no referral was sent. There are difficulties and as you can guess, special circumstances that surround our children but again, I have to say that in my case, and in the case of other mothers I have spoken to, these kids are more than worth it! My daughter is the light of my life and I will gladly face whatever challenges come just to have her.

Rebecca - posted on 04/09/2011

Okay ladies...first thank you so much for being completely honest about the joys and struggles of raising your precious little ones. They are adorable. I would absolutely never abort any child for any reason. I really do want to have another child no matter what special needs that child may have. There would never be a question of whether I would love the child. However, I'm trying to figure out what those "needs" might be before I get pregnant because I know that I'm in a high risk catagory for having a child w/DS or Autism (I posted to that group as well) and I'd like some idea of how raising a child w/DS (and autism) is different than a "typical" child. I know a child could have any number of complications (I have a child w/ADHD and another born w/severly clubbed feet who needed surguries&castings, etc.), but the most likely things to happen would be DS or autism. I really wish I had a neighbor or friend w/a child that has DS that I could ask about their experience, but I don't, so I thought I could ask in this forum. Nicole, I love your spirit, but I think you have me all wrong. I agree that when you get pregnant you accept whatever child God gives you, but I don't think it's wrong to try to get a picture in your mind of what needs a child would have w/DS. If someone asked me about raising a child w/ADHD or clubbed feet (both of whom were also premature which was much different than bringing home a term baby too!) I wouldn't be offended, I would help them understand how life w/those challenges impacts the family so they could decide if they were prepared to handle those challenges. I wouldn't trade any of my kids for anything and would do everything all over again. BUT I do know that if I had a child w/clubbed feet now it would be much harder to manage the care in some ways, but I could handle it. I don't know much about DS so I'm just trying to gleen info so I can decide (since that's a likely reality) if I could be a good parent to a child with that set of special needs w/our current family situation.

Nicole - posted on 04/09/2011

I feel for what u had gone thrw. Not only was Cooper unplanned it was also a tough pregnancy. I hemoraged at 35 wks and both of us just made it-actually we didnt even make it by ambulance to my hospital.I had to deliver at another one.I guess thats where we r different-I would go thrw it all again.He spent months in the hospital-open heart surgery-blood transfusions-feeding tubes-oxygen-hernia repair on both sides-had 7 different Drs-5 differnt therepist- I could go on. To look at him now-2yrs old walking around he knows lots of signs( sign language) and understands soo much. He is smart and funny and just lights up the world. He is my warrior and has taught me more about life in his 2yrs than I learned all of mine in 31. I would go thrw it all again w out a thought-a lil worried but I'd do it all again.

Heidi - posted on 04/09/2011

I love my daughter with every ounce of my being. Just getting pregnant with her was truly a miracle, in my eyes as well as the eyes of the medical community. She wasn't planned for, she wasn't even expected at all. I wouldn't have chosen to not have her, no matter what. And I love my kids, adore babies, either mine or other people's. I am 33 years old and the thought never once entered my mind that this baby would be different from the others I have had. Until I was taking 800 mg of progesterone every day for 6 weeks to keep from miscarrying, until I had a positive blood screening test for DS or another fatal defect, until a heart defect was found during a routine US, until I had an amnio (that I didn't really want) that came back 100% positive for DS, until I started having contractions @ 28 wks with no dilation, until I laid in the hospital for 3 and 1/2 days in induced labor making no progress. Would I trade her? Hell no. Would I willingly, knowingly, go through it all again? I'm not so sure. She's amazing. And truly a gift from God. But mentally, physically and emotionally, I'm not sure that I could jump right back on that particular bandwagon again. It has nothing to do with not wanting to deal with anything negative, and everything to do with already having my hands full and medically being unable to handle the physical trauma of being pregnant for ANY child again. I agree that every child is a blessing, and also believe that every single one is here for a purpose. I would never and could never end a pregnancy for any reason. But I have to say that having another baby terrifies me. Would I love another baby if God gave me one? Without a doubt. But it would be His choice for me to be pregnant, not mine.

Nicole - posted on 04/09/2011

Im not trying to bash her but why is it even a qestion weather or not to try to have another child. U never know the outcome of anything till it happens.So if shes asking could I handle a child w DS then she needs to question what if my child has a missing limb or is born def. or has some disease.Y is she questioning DS? If u really want another child u get pregnent and u take on whatever responciblity that it comes with. I love all my children and would have another because I want another child-not think well what if this child is born different. I say if u want another child-u have one! I do support anyone who has any child w dissabilties. I dont support some1 who is thinking would it still b ok if my child is born w DS.Cause the answer is yes-and if ur not ready to handle anything negative then u shouldnt try again. I have friends and family w children w and w-out special needs. They never hesitated to get pregnet again.Bottom line-if u want more kids u just have them.If she was told-yes ur next child will have DS would she get pregnet? I would even 4b I had Cooper. God gives u children and everyone is a blessing!

Heidi - posted on 04/09/2011

Nicole, I don't think that she was asking whether she should have a kid with or without Down's. She was asking for information about it beforehand, as well as expressing her doubts about taking care of a child with special needs. Yes, if one of our other children was sick we would do anything necessary to take care of them. Abortion was never mentioned. I know when I was pregnant I wanted to find out everything that I could about what to expect before she was born. I say, personally, kudos to Rebecca for trying to find out what she is facing before she makes a decision to get pregnant again. We all need to support each other, not bash intentions to pieces. Would I have chosen this road? Before i knew what I know now, nope. But am I glad I'm on it? For sure!

Nicole - posted on 04/09/2011

If the only thing thats keeping u from having another baby is a chance w DS. Then dont have one! My son is perfect in everyway! Had open heart surgery among many other health issues-has therepy all the time.But I never thought for a sec. while pregnent to abort and had no idea what to expect.He is loved by every1 who meets him and has come so far. I have 2 wonderful older children as well who r unbelievable w him. Ask urself-if u were guarenteed to have a child w-out DS would u get pregnent tomorrow? Just because it may have DS shouldnt change ur decision. What if one of ur older kids has a major health issue-u'd adjust ur life for ur child. Its people like u who have know clue about kids w DS. Ur making a decision off of a-mayb it will have downs. And if it does-who cares thats ur child! Ur have no idea what its like till u go through it and live it and it becomes ur life. Thrs no way to prepare. In my opinion u dont deserve a child w DS cause they r blessings from god-it is he who chosses and knows who is able to care and love any child unconditionally how ever they are! I am not trying to sound rude but if ur holding back because of a chance w DS-dont do it! My son has given me so much-I cant describe what an impact hes had on our family. Its been tough and hard and scary but I would get pregnet again w-out any concern what the outcome would be. I often say how I would love to adopt children w DS-thr are soo many.If u have to ask other parents if u should have a child w DS-u dont deserve one!

Heidi - posted on 04/07/2011

I'm a new mom of a beautiful baby girl with DS. She also has a complete AV Canal defect, which in layman's terms means that she has holes between the upper chambers and the lower chambers and only has a single heart valve instead of two. I was absolutely terrified and completely unsure of what to expect when she was born. We have two other kids and I am a full time student. Lydia is facing open heart surgery sometime in the next few months, which is terrifying to me as her mom. But the doctors have reassured us that it will be more traumatizing for us as her parents and I know that this is something that she just has to have done. She can't survive indefinitely without it. We have 3 doctors (one a reg. pediatrician, one a cardiologist, and one a specialist in DS) and she has food allergies already as well as very sensitive skin. There will be therapists coming to our home in the very near future to start working with us to help her along and assist her in her development. Ok now that I have gotten all the "issues" out of the way, let me tell you what is great about having her! We brought her home from the hospital at almost 3 wks old and she was already smiling at us and trying to roll over. She is unlike my other children as far as loving to be cuddled, kissed on and her personality is almost always sunshiney! She babbles happily to anything that will hold still long enough, loves taking baths with Mommy, and is about the sweetest thing I have ever seen. She is teaching me determination and strength every day, as the things that the other babies did with very little effort takes her a little bit more. She's gorgeous and I wouldn't trade her for another baby w/o DS! I don't think there is ever such a thing as over confident! :) I was scared to death that I wouldn't be able to handle everything but you know what? I am her mom and I CAN handle what ever comes our way just because I love her! And you could too! We should all be so lucky to have a Down's baby in our lives for the sheer joy they bring! :) Good luck!