DownSyn Forum

[TheBradyBunch]

I want to start by saying that I have a very happy healthy little boy who happens to have down syndrome. I guess I should start from the beginning.

Hi, my name is Christina, and I have 5 children. I was 25 years old when my 4th child was born.

When I found out I was pregnant with him, my daughter (3rd child) was just 3 months old. Despite my best efforts to prevent pregnancy, I was blessed with one lol. It was different though, because for the first time in my life I wasn't happy to be pregnant. I was offered abortion, I said no. It's not something I believe in. I was offered the triple screen, I declined, I wouldn't consent to an amnio, so what was the point of having the triple screen?

I was doing laundry one day and I felt a trickle, I was 29 weeks pregnant. I said to myself, ok, if this continues to happen through to tomorrow, I'm going to call the dr. Well it did. I was told to go to emergency in case it was my water. The emergency nurse asked me if I wasn't sure I had just peed myself (pretty sure I know the difference). I hadn't, it was amniotic fluid and I was 1-2cm dialated (that part is normal, my cervix is pretty much always dialated thanks to having 3 children prior). I was admitted to hospital that day, and an extensive ultrasound was done. They were trying to figure out why a woman who had 3 full term healthy babies suddenly had her water break. The ultrasound tech didn't seem as calm as they usually did. About an hour or two after the ultrasound I had a specialist in my room. All I remember was him saying my child could have down syndrome or would be a dwarf. I went numb. After a day of crying I decided I won't worry about it until the day he is born. Much to my suprise that was 3 weeks later after they induced me (it's more dangerous to stay pregnant at 32 weeks after your membranes have ruptured because the risk of infection outweighs the benefits of the baby remaining in the womb). 4 hours after induction, he was born.

The pediatrician and other dr's started working on him right away, about 5 mins had passed and the dr held him up and said "yup, he's got down syndrome". I was crushed. I hadn't even held him yet. I refused to believe it. Days later it was confirmed by a genetic test.

He was in hospital for 10 days, he did so well. He was only tube fed in the hospital for a couple days, and started taking all of his nourishment by bottle a lot sooner than anticipated. Medically speaking, he and our family are VERY lucky. They told me not to expect him home until at least his due date. 9 days after he was born, they call me at 8:00pm to tell me the dr is releasing him and he can some home the next day. I was not prepared. Not at all.

So I went to pick him up, he did fabulous in his carseat test. I took him home. Shortly after we got him home, the flood gates opened. I was not happy. Not even close to happy. They put me on anti-depressants, they didn't work.

My son took 2 hours to drink his bottle, and with 3 small children to take care of, that was not something I was prepared for. How do you sit down for 2 hours to feed a baby when you have a 4 year old, 2 year old and a 10 mth old?

It didn't take long for me to completely lose it. I've been pretty much the same since then. I paid for as much counselling as I could, before the credit cards were maxed and any savings we had ran out. There is no help for me, and the reason? They say he "only" has down syndrome. They say I don't have any social problems, I'm not an addict of any kind, I'm too normal for anyone to provide help for me.

Don't get me wrong. I play with him, show him affection as I do my other children, it just doesn't feel right. These days it's consumed me, I never feel right. I always have this tension in my chest, nothing I do can get rid of it. I have 5 children now. Some people say why would I have another after him? Well, because I love children and I love my babies. Why wouldn't I? The only one I seem to have a problem accepting is my son with down syndrome. I don't know why. I have done all the soul searching you can think of, I have tried to get as much help as I could, and apparently there isn't any out there for me.

I just read the book "the day my son and I were born". Great book, and if any of you have read it, the first days, that is where I still am. I'm sure I'm depressed, but what do I do when the antidepressants don't help me to bring down my barriers? I don't know what to do and I need help.

Everyone around me looks at my 2 year old and says "he's just a baby".

My mother is convinced that I just force him he will eat solid food. Well, he's 19lbs, still in an infant car seat, crawls, and eats only from a bottle. He has just started to explore toys with his mouth. I don't believe he has been ready for food by spoon or hand up until this point, but everyone seems to want to go against me and say "well he's 2, of course he is".

I guess I'm just burnt out. I don't know what to do anymore, I want so desperately to get through this. I want the barriers to come down. I don't want to be tense all the time. I don't want to cry all the time. I want to enjoy my children, every one of them. But I don't know how to anymore. I feel like I'm in a dark room and I can't find the light switch, or a window, or a door.

The chart I was given to show the down syndrome development must have been a joke. I said to them, why would you give this to me, you don't know what he's going to do and around what time he will do it lol. You can clearly see this by the giant gaps in age range. I feel like screaming, my son is not chartable. He will do what he is going to do when he's good and ready to do it. I can't force him to anything he isn't ready to do. It would be like trying to potty train him right now. It would never work. He doesn't understand when someone is upset with him, he doesn't connect it, he thinks that I am trying to play with him when I say no. Yes I am sure he's not just trying to be naughty, I live with him everyday and trust me, I know exactly where he is in his mental develpment.

Please, tell me that someone else has gone through this, or is going through this, and that I'm normal and not some kind of freak. I'm so tired of people telling my that my son's disability is a blessing. It's not. Noah, my baby, my 2 year old baby, is most DEFINATELY a blessing. The down syndrome he was born with, is not. I can't bear to watch him struggle day in and day out, it's frusterating for both of us. I just don't know what to do anymore.

- A very mixed up mother

_________________
Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

[Nicola]

A big hug, momof5. Welcome to this site. I'm so glad you have come. I can't claim that this site will fix all your problems, but I haven't come across a person yet who hasn't come to see DS in a more positive light from being here. This is a big community and there is a huge amount of knowledge, friendship and support available here.

I am Nicola, mum to 7 kids and living on the Australian east coast. Gianna with DS is also my second youngest. She is 6, doing well in a regular kindergarten and a barrel of mischief and energy.

While I didn't struggle the way you have, I can assure you that so many do and all your feelings are perfectly natural and normal. It is a hard thing to accept that your child is different. It is hard to raise a child with extra needs, especially with a large family. It is hard to have so many little ones close in age. You have a lot on your hands, and I think that there wouldn't be a person amongst us who would not find that difficult. All I can suggest is that if you hang around the boards for long enough you WILL gradually change and begin to see Down syndrome differently. You have clearly spoken to doctors, about your depression and done what you can medication wise. I'm so sorry that hasn't helped. Is it worth going back and asking for something else to try? I am sure there are plenty of others on here who have experienced depression who will have good advice for you.

You clearly love your son. That will take you a long way. Please stay around with us so we can support you to get through this and see the light at the end that you are so desperately seeking. I wish I could reach across the ocean and give you a big hug and help you out a bit.

_________________
https://fbcdn-sphotos-f-a.akamaihd.net/hphotos-ak-frc1/457305_4140051469588_391538551_o.jpg
Mum to Brendan 18, Chiara 17, Kiernan 15, Aidan 13, Lachlan 12, Gianna 10 (DS) and Sienna 8.
"This then is what Yahweh asks of you: to act justly, to love tenderly and to walk humbly with your God."

[violettesmom]

Welcome,
I only have a few moments - I have to go to work.
Have you gotten involved with your local DS group?
What were your early experiences with people with disabilities, and DS specifically?
Has your son participated in EI?
Did you have the antidepressents before or after this most recent pregnancy?
Did you have any ppd after the births of your other children?
Where is your hubby in all of this?

_________________

[Momof6]

First off let me give you some cyber hugs.

My name is Christine and I have 6 kids. My last Austin is almost 10 months with DS.

I agree with everything Nicola wrote to you. I myself have my good days and bad days, and when I'm having a bad day I try to come here because I know I'm not alone. You are doing everything you can and your strong enough to realize you need help and thats the biggest step. YOur a good mom and a good person and try not to get down on yourself. Like Nicola said, please come here often. Everyone here are just awesome and someone will be that person who can really help you because they have gone through the same feelings. Hang with us hon and I look forward to getting to know you and your family better. Sounds like a beautiful family.

_________________
~Christine~
Mom of 6
Brandon ADD/ADHD 19, Chelsea 16, Connor 14, Logan 9, Cody 6 & Austin 4 ( DS & Hirschsprungs pull through 12/8/08 ) diagnosis 10/28/10 Colonic Neuropathy, 12/16/11 dx with seizure disorder, neurogentic bladder...Monti Cath 11/9/12
http://www.caringbridge.org/visit/austinpaquin

I think I can, I think I can.
Climb the highest hills in all the land.
(If you think you can, you can.)
He could and he did !

I say CHEESE !

[eroch]

Hi Christina,

I understand how you feel. My daughter is 19 months old and she has down syndrome and several congenital malformations. I find there is no help available with respite where I live and that is a problem. Where are you in Canada? Is there any respite care available?

My daughter is tube fed so I totally understand the feeding frustration. I'm glad my other children are older because I could not imagine taking care of her if I had younger children.


Evelyne

_________________
Evelyne
Mom to
Benjamin (99)
Jeremy (01)
Alexandrine - DS (Nov 07)

[TheBradyBunch]

violettesmom wrote:

Welcome, I only have a few moments - I have to go to work. Have you gotten involved with your local DS group? What were your early experiences with people with disabilities, and DS specifically? Has your son participated in EI? Did you have the antidepressents before or after this most recent pregnancy? Did you have any ppd after the births of your other children? Where is your hubby in all of this?

Yes I have been in touch with my local DS group, for a while now, and everyone else you can think of.

I went to church with people who had down syndrome and about my only interaction was making sure I said hi, as I did with all the church members I'd walk past every sunday morning.

Yes, he has people who come to see him. I have had to cancel some people in the past because they were just upsetting him trying to force him to do things he wasn't ready to do.

I have never been on anitdepressants before Noah.

I have never had PPD with any of my pregnancies except Noah.

I'm a stay at home mom, he works full time throughout the day. He comes home and helps with what he can, but my house is my prison, I can escape only to do more things for the house. Respite is not available to me, they tell me my son "only" has down syndrome. I'm about ready to pull my hair out.

Everyone and anyone you can think of to call for help, I have called. I have cried, begged, and finally given up. I can't get help, respite, counselling, nothing.

_________________
Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

[TheBradyBunch]

eroch wrote:

Hi Christina, I understand how you feel. My daughter is 19 months old and she has down syndrome and several congenital malformations. I find there is no help available with respite where I live and that is a problem. Where are you in Canada? Is there any respite care available? My daughter is tube fed so I totally understand the feeding frustration. I'm glad my other children are older because I could not imagine taking care of her if I had younger children. Evelyne

I live in Surrey BC. The WORST place to need help. They blame it on lack of funding, and then they try to minimize his difficulties. CLBC wouldn't even let me apply for the at home Program the first time, they said he's not even a year old and that I shouldn't need help, afterall, he only has down syndrome.

After a long conversation, mostly me telling them how I felt and what I have been going through, they have allowed to me to apply. They warned me first though, they said he's ONLY got down syndrome, you probably won't be approved.

It's like a sick joke our government plays with us "oh yes there is so much help out there, so many programs out there for parents"...and then you try to access that supposed help...and get told "no" over and over and over again.

_________________
Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

[anthony]

I'm new to parenting. My son is 16 months old, he's my only child, and as far as I'm concerned, -he's perfect.

You will feel better. I promise. Try to enjoy this wonderful journey.

[MamaCarrie]

Wow... many hugs, you sound so discouraged. I agree w/making sure you come here often if you can... there is so much support.
Also, give yourself some grace, too. You have had 3 children in 4 years, right? That'll wreak havoc on your hormones and have you questioning your sanity, Down syndrome or not. (Ask me how I know!!)

When I'm feeling overwhemed (often these days) I try to prioritize my tasks. I write down what I want to accomplish during the day, and the older kids pitch in and help me try to get some of those things done. We never get it all done, but it helps me to see we are making progress. And on the days where nothing is checked off, I remember that I've held, rocked, fed, diapered, read to, and played with my children. And that is the most important accomplishment of each day... nurturing them and building our relationship.

Is there any other kind of support you can get in your corner? Family nearby? Friends? Church community? I know I can get tunnel vision where I feel like I should be doing it all, but I have lots of folks who are thrilled to help out if I just let them know I need it. Even having someone over to visit and hold babies helps. (If I'm really lucky, two friends will come over and insist that I take a long bath or a nap!)

You are doing the most difficult job on earth right now: being a Mommy to little children. Despite your feelings, you are the exact best Mommy for each of your precious children. Rest in that knowledge.

_________________
Carrie
Mama to:
Bennett (9/96), Merrick (1/99), Giselle (11/04), Calder (4/07), Isaac (7/08 ) and Jotham (4/09)

http://mommypress.com/itllturnup/

[TheBradyBunch]

I did have kids pretty close together. I had one after Noah as well, so it's like, 3 kids in 3 years. Not fun, since my pregnancies suck, I'm sick all the time, I can't do basic housework without having to take several breaks, I can't even stand to fold a load of laundry lol...it's really quite rediculous. I'm not sure how I survived being pregnant with kids, it's all so blurry lol.

Does anyone receive respite where they are?

_________________
Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

[Willow]

I feel so sad for you,you sound so downhearted,i had 3 children in quick sucsession but am now caring for my Sister with DS and it so hard work,i feel i never gave birth to her but am looking after her,she is 53 and sometimes i feel like you,i wish i could give up but my conceince won't let me so we struggle through each day,she is so loving as i have arthritis in my hips and she brings me endless cups of tea,but she has started playing up at night and won't go to sleep until i go to bed,i wonder why i have had this as i am 56 and think i should be free as a bird now,am thinking of you xxx molly

[~Ben'smum~]

Hi, i'm sorry that you are in this dark place, it must feel so lonely.(((hugs))) you've done the right thing by joining this group as you'll see that even a person with ds can lead a fairly normal life. Try not to focus on the negative stuff and the things that your baby can't do, but look at the things he can do and celebrate that! Your child WILL learn to do things but in his own time.

_________________
Karen- Mum to the world's cutest baby!! Ben

[SherryinWI]

I am hearing that you are really stressed out with the Down syndrome and haven't gotten passed it. I also hear that you are blaming the Down syndrome on your mood and ability to care for your children or your sanity. Having children in general is tough. I had a very very slow feeder too so I know just how much time it took out of my day to feed him. It was difficult with having two siblings that still very much needed my attention too. I had to give up alot. Yet I never had that resenting feeling towards Nate or really even towards Down syndrome.

I do hope this passes for you. I know some families have adopted children who were 2 or 3 years old with Down syndrome. Maybe they just couldn't handle the stress that it was for them. I do know getting some respite could help. I have my parents take my children for an overnight once every 3-4 months and this helps me. Otherwise I am pretty much it 24/7. My husband works unpredictatable hours so he is either here alot or not at all and it has been pretty much like not at all. Do you have any friends, nieghbors, familes from your church or school that may be able to help out. Sometimes just asking is all it takes. I know it is difficult to ask and I personally am terrible at asking. {{{HUGS}}}

_________________
Sherry
Evan 12, Olivia 11, and Nate 8*

Hosted on Fotki

[eroch]

I did receive respite before my daughter's open heart surgery (2 hours twice a week for 2-3 months). It wasn't much but it was enough to help. Now that I'm back to work, I can't get respite anymore and finding a babysitter is very difficult because my daughter is tube fed. We have trained one already but she left after a few weeks.

It sounds like respite would help you.

Unfortunately, I'm in Quebec so I'm not sure how BC services work. When qualifying for respite, they took a whole bunch of factors into account including help I was receiving from family (none since they're all a few hours drive away), difficulties in taking care of the child (that would include extra time for feeding, medical appointments, etc), my emotional status and my needs.

Even if you were told no before, you need to ask again. When I was denied services in the past, I was told that the only way to get services was to formulate a complaint.

If you are in a DS association, you can ask help from other parents or the association to find respite that suits your needs.

Evelyne

_________________
Evelyne
Mom to
Benjamin (99)
Jeremy (01)
Alexandrine - DS (Nov 07)

[violettesmom]

I've been thinking a lot about you...and today I was sent an article that was really about business and the way people need to behave to fight through the current economic crisis. For some reason I though this section might be helpful to you.

-----------------------------------------------------
Q: You have found that resilient people handle change in a more positive way. What's different about their strategy?

A: The resilient person faces exactly the same circumstances -- they are not protected from the trauma of life -- but their first reaction is, ‘How am I going to get around this thing?' Their basic DNA is optimistic rather than pessimistic; so when a negative change happens, they don't have a clue how they're going to come out of it in good shape, but their sense is that they will. Resilient people are very focused, very mission-oriented. They are flexible and creative.

Change blows you off course, but that's the whole point of change. They know what the course is -- they are clear about what they are trying to do with their lives -- so they know how to get back on course. They might say, ‘Even though what I thought the next five years were going to mean for my retirement has changed, I have a core sense of where I'm headed.' They go into problem-solving mode rather than blaming mode. Low-resilient people take a great deal of energy being lost.

Q: You say that resilient people are also organized.

A: It has nothing to do with what your closet looks like at home. This is a psychological organization -- the ability to walk into a chaotic environment where nothing makes sense and quickly determine what's relevant and what's noise. When faced with chaos, resilient people go into categorization -- this is relevant, that's not -- and they start moving toward the adversity. Victims pull away. The victim's reaction is, ‘I don't think I'm going to succeed, I'm not sure where I'm headed, this has been so disruptive, I'm overwhelmed with the chaos -- fetal position is not such a bad option here.'

Q: You suggest that the loss of control is the most disorienting aspect of change.

A: We have the highest control need of any animals on the planet. That's what allowed us to float to the top of the food chain. We are addicted to control -- physiologically and psychologically. When you have direct control, you know what you want and you know what button to push to make it show up. The trouble is, in a changing, turbulent environment, it gets harder and harder to have direct control -- you're not sure what buttons to push because the buttons you pushed yesterday don't work today.

Q: Are there ways to increase your sense of perceived control in situations such as job loss or financial loss, such as the Bernie Madoff scandal?

A: Rather than telling people what they should do or say, let me tell you the patterns that people apply who typically succeed with this. This is a little zen, but the people who self-counsel typically say three things to themselves: It is what it is. It is as it should be. It is in my best interest.

‘It is what it is' is a wake-up call for me not to make this bigger or smaller than it is -- don't add drama or deny what has happened: ‘I lost my money. I did not lose my life.' Secondly, ‘It is as it should be' tells me that in order to get through this I have to learn some important lessons. What are those lessons?

The third is the kicker -- ‘It is in my best interest.' The idea is, let me think back on every negative thing that's ever happened to me. How many turned out to my advantage? This doesn't excuse the horrible person or event. I don't have to like what's going on to believe that it will be yet another example of how a negative situation turned out to be positive. Can you go into the change with that attitude?

I've seen many successful people do this. Some do it from a spiritual standpoint, for some it's just practical. They say, ‘There are some important lessons in here for me, and I will operate through it as if it's in my best interest.' It's a kind of mindfulness. The antithesis of mindfulness is reactive: I'm angry or resentful. Clearly I have a great case to be angry -- but when I look back, that anger or blaming doesn't help me very much. What if I were to make a decision to go in a different direction? That's the difference between being mindful and reacting to the moment.

http://finance.yahoo.com/expert/article/moneyhappy/175514

_________________

[nora]

My kids are space out 24, 16, 12, 4, and Turner 5 months with ds. I had a friend when I was young who had kids close like yours and she needed a lot of meds. I thought I would never be crazy enough to have them that close. The thing now is she has no kids at home now and I have four. Who's crazy now. Just give it some time. Get whatever help you can. If I lived close I'd help you. Even if your two year old didn't have Downs you would have your hands full. God Bless!!! Welcome to the forum.

_________________
Lenora 46 kids 23,16,13,4,and 9 months ds

[luvnlife]

Hi! I sent you a pm but I'm not sure if it worked - if you didn't get it, can you let me know?
Thanks!

_________________
Jenita
Mommy to Blake (Nov 14, 2008)

[julesinottawa]

I just wanted to say hello from another Canadian on the board. I'm on the opposite coast from you so I don't know how the services work there. Is it possible that you have post partum depression? I know you said the medication isn't working but wouldn't that be something that would help qualify you for respite through community services? I know you said you've tried everything but I'm just trying to think of things. I will echo what some others have said, that your kids, so close together would be hard enough without the Down syndrome. I hope you are able to find some peace with it. Hopefully time will help.

_________________
Julie, wife to Jason, mama to Olivia (Sept 00), Ethan, (Sept 02) and Leo (July 08)Ds