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Breastfeeding Moms Breastfeeding Moms

special needs children....UPDATE

Posted by on Aug. 3, 2014 at 12:21 AM
  • 25 Replies
I have so much respect and admiration for moms who have special needs children, especially those moms who stand up and are great advocates for their children. My mom has a son with downs syndrome and autism and I saw how she has given so much for him, breastfeeding was just the start......its a dedication like no other. I have friends and family as well who have done the same. My niece was born with PMG. My sil is such an advocate for her daughter, I am amazed. The docyor first wanted to diagnose her with autism, but my sil knew that wasnt it (her niece has autism). Anyways, she is making sure that her daughter gets the therapies that she needs etc. I asked her what she wanted me to get her for her bday. She said no toys, but diapers and formula and clothes. It made me sad a bit. I know how much breastfeeding is such a great source of nutrience for baby's growth and developement. She will be having speech therapy soon, had she breastfed she would probably still need it honestly, but I am sure she would be developing so much quicker than she is now, just by nursing instead of using an artificial nipple helps the shaping of the mouth. Anyways, my niece is so blessed to have caring parents, it just makes me sad that there was something so wonderful and natural that could have helped their baby.

UPDATE:
I am sorry if this post came off as insensitive or judgemental. It wasnt intended that way. I know that there are many moms here and elsewhere who are faced with so many challenges and decisions that come with caring for a special needs child, and it can be overwelming to put it mildly. I completely admire the dedication parents have for their children and I know that feeding them is only a part of the equation. However I dont think it is fair for breastfeeding to be seen as one choice to make when caring for a child, especially a special needs child. I do, think that the decision shouldnt be held lightly. I do believe that there are so many benefits that simply cant be met with a bottle of formula. This doesnt mean that if they decide not it its the end of the world, or that their child isnt cared for. I do think though that there should be more support, especially from health care professionals, and that when it doesnt happen it is a sad thing..if you disagree with me, that is ok.
by on Aug. 3, 2014 at 12:21 AM
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Replies (1-10):
BraniOut
by Member on Aug. 3, 2014 at 3:36 AM
My DD is also special needs and has low muscle tone. When she was born, she couldn't latch and suckle properly and my body wouldn't respond to a pump. I tried desperately for 8 weeks, but the only time I was able to nurse was when someone was available to help her and I latch. I went back to work at 8 weeks and then she just flat out refused to even try, so she was on bottles and formula basically her entire life. This was 8 years ago and I lacked the resources that I have now. I had no idea about SNS or anything that could have helped, and the lactation consultant I spoke to could only say to keep trying, but offered no further advice. I assumed that my milk was gone when she stopped trying. I feel bad that I didn't know what I know now. My 2 month old son is my second baby and I was much better prepared this time. He also had no issues with nursing right away, so he has only had breast milk. Anyway, maybe your SIL just didn't have enough information to help her?
kajira
by Silver Member on Aug. 3, 2014 at 9:36 AM
1 mom liked this

MY belief in breastfeeding is why I've torterously pumped for 15 weeks for my nicu baby, he's going to have a weak suck, and be tired easily, but the couple times i've been able to get him to latch and he sucked for a minute straight, I started to have a let down... I think i'll end up responding to him a lot easier then I do the pump, I also think that by pumping one side and he nurses the other, I can help stimulate a let down for him if he gets tired, or worse case scenario, I've hand expressed 2oz in one sitting just to see if I could do it, and how long it takes (about 5 minutes. LOL) so I have a back up plan in case he's too tired....

And worse case scenario I have probably 500oz in my home freezer sitting there, plus 2 months of frozen milk of 24-50oz a day they've stored too.

iSMILEheCRIES
by Bronze Member on Aug. 3, 2014 at 9:43 AM
4 moms liked this
I agree!!!! I got chills reading that. I believe the reason Gemma is doing so well is because of breastfeeding. I have a hard time sayin that on her page because a lot of other Krabbe moms didn't survive breastfeeding. But IMO Gemma uses her suck as swallow muscles every 2 hours so she won't lose that skill as soon as others. Plus she can control the flow because my body an her body just understand each other. And on top of all that she gets anti germ juice! Oh and no metal breath smell either!
Precious333
by Group Mod-Julia on Aug. 3, 2014 at 11:01 AM
1 mom liked this
Great job mama! I hope that you can nurse more and pump less as times goes by. I have admired your strength mama, and love hearing your updates!

Quoting kajira:

MY belief in breastfeeding is why I've torterously pumped for 15 weeks for my nicu baby, he's going to have a weak suck, and be tired easily, but the couple times i've been able to get him to latch and he sucked for a minute straight, I started to have a let down... I think i'll end up responding to him a lot easier then I do the pump, I also think that by pumping one side and he nurses the other, I can help stimulate a let down for him if he gets tired, or worse case scenario, I've hand expressed 2oz in one sitting just to see if I could do it, and how long it takes (about 5 minutes. LOL) so I have a back up plan in case he's too tired....

And worse case scenario I have probably 500oz in my home freezer sitting there, plus 2 months of frozen milk of 24-50oz a day they've stored too.

Precious333
by Group Mod-Julia on Aug. 3, 2014 at 11:04 AM
1 mom liked this
I admire you so much, you have no idea! I agree with everything you say. And I LOVE baby breastmilk breath!

Quoting iSMILEheCRIES: I agree!!!! I got chills reading that. I believe the reason Gemma is doing so well is because of breastfeeding. I have a hard time sayin that on her page because a lot of other Krabbe moms didn't survive breastfeeding. But IMO Gemma uses her suck as swallow muscles every 2 hours so she won't lose that skill as soon as others. Plus she can control the flow because my body an her body just understand each other. And on top of all that she gets anti germ juice! Oh and no metal breath smell either!
Precious333
by Group Mod-Julia on Aug. 3, 2014 at 11:08 AM
Every drop counts mama!

I have given my sil many resources and allowed her to ask whatever questiom and have whatever bfeding support she needed..she made it quite clear that she didnt want my help. Her first she pumped and then.switched for formula. The second I am not sure if she ever gave breastmilk, but maybe she did at the beginning.

Quoting BraniOut: My DD is also special needs and has low muscle tone. When she was born, she couldn't latch and suckle properly and my body wouldn't respond to a pump. I tried desperately for 8 weeks, but the only time I was able to nurse was when someone was available to help her and I latch. I went back to work at 8 weeks and then she just flat out refused to even try, so she was on bottles and formula basically her entire life. This was 8 years ago and I lacked the resources that I have now. I had no idea about SNS or anything that could have helped, and the lactation consultant I spoke to could only say to keep trying, but offered no further advice. I assumed that my milk was gone when she stopped trying. I feel bad that I didn't know what I know now. My 2 month old son is my second baby and I was much better prepared this time. He also had no issues with nursing right away, so he has only had breast milk. Anyway, maybe your SIL just didn't have enough information to help her?
SuprMom12042702
by Bronze Member on Aug. 6, 2014 at 2:11 PM
I agree that breastmilk is needed especially for special needs babies/kids. Right now we still do not know what is going on with Ryland. He is getting breastmilk all the time now. I am pumping around the clock (I even have a hand pump in the car) for him. To make sure he gets what is best for him.
We go Monday to the gastroenterologist hopefully they will have answers to why Ryland won't gain weight
Precious333
by Group Mod-Julia on Aug. 6, 2014 at 6:11 PM
Praying for him. He is blessed to have such a great mama :)

Quoting SuprMom12042702: I agree that breastmilk is needed especially for special needs babies/kids. Right now we still do not know what is going on with Ryland. He is getting breastmilk all the time now. I am pumping around the clock (I even have a hand pump in the car) for him. To make sure he gets what is best for him.
We go Monday to the gastroenterologist hopefully they will have answers to why Ryland won't gain weight
SuprMom12042702
by Bronze Member on Aug. 6, 2014 at 7:41 PM
Thank you :)

Quoting Precious333: Praying for him. He is blessed to have such a great mama :)

Quoting SuprMom12042702: I agree that breastmilk is needed especially for special needs babies/kids. Right now we still do not know what is going on with Ryland. He is getting breastmilk all the time now. I am pumping around the clock (I even have a hand pump in the car) for him. To make sure he gets what is best for him.
We go Monday to the gastroenterologist hopefully they will have answers to why Ryland won't gain weight
austinsmama1106
by Bronze Member on Aug. 6, 2014 at 11:29 PM
My oldest has down syndrome. I wanted to breastfeed himoso bad but I had no one helping me get him to latch and I didn't know what to do then. I pumped for 5 weeks before drying up. If I had known then what I know now, I would have made it much farther. But I know he got what was best for as long as I could keep up with him. He is 7.5 now and I've breastfed both his sisters, he has always sat with me while they nursed rubbing their heads or hands.
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