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sailormom
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| Posted: July 23 2008 at 11:15pm | IP Logged
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Hi all,
This is the only place I can think of to ask this question, so please bear with me. I have a 2.5yo with a variety of special needs. Along with his developmental delays and other issues, he has severe anxiety and still nurses constantly, especially at night. He's recently been given medication for nighttime seizures that should knock him out, but doesn't.
I nursed and coslept with my older children well into toddlerhood, and they transitioned easily out of my bed and off the breast when they were ready. Only one of them was still nursing at this age, and that was just once or twice a day and not at all during the night. But with my littlest guy, it's nearly impossible to distract him from nursing, either during the day or at night. He has no self-soothing behaviors at all, which go along with his other issues, and that, coupled with his anxiety, are very tiring for me.
Has anyone ever done the extended nursing thing with a special needs toddler? Please tell me he will eventually wean!  Most of the time, I don't mind it, but lately... I'm just tired!
Thanks for any wisdom you can share.
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albeto
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| Posted: July 29 2008 at 1:15pm | IP Logged
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Hi Sharon,
I wish I had some advice for you but have none. I have found a very fine line between "they will get to that developmental stage in their own best time" and "if I don't provide them a push, they will never get out of the nest." And as much as I love my kids, I will be doing them no favors by letting them stay in the nest, fearing everything outside. Your little one is only 2 1/2 so he's still chronologically fine nursing, developmentally he should be okay but I can completely understand the toll it takes on you.
Can he handle routines? Can you have pictures of a clock to show him when it is time for this comfort nursing (you would slowly wean it down to when it works for you but give him lots of time when starting)? Can he handle an economy system - tokens for nursing and when he's done for the day, he's done (again, starting out with more than he'll need so the economy system doesn't start off more stressfull than it needs to be). Just some ideas.
When mine was that age I didn't know he was special needs. I just knew he was a handful and nothing seemed to work and all my in-laws' reassurance of "oh, he'll grow out of it" and "he's probably just teething" drove me nuts (actually, more than nuts).
Praying for insight for you.
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sailormom
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| Posted: July 29 2008 at 4:31pm | IP Logged
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Thank you! :)
An economy system would be over his head right now, but he *is* very routine-oriented, so taking advantage of that might work!
I expressed my concerns to my wonderful pediatrician, and she reminded me that while he's 2.5yo, he's developmentally much younger, so his behavior is appropriate for his developmental age.
Our OT has also been working with me to find some other things we can use as soothers to transition him into nursing less. She's working on finding more oral-motor stimulation stuff for him as well.
I know it'll all work out eventually... Thanks for the ideas, and the prayers! :)
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Sparrow
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| Posted: Aug 22 2008 at 3:30pm | IP Logged
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I think your ped is right on the money. Even many children who are developing at an average pace are still nursing frequently at 2.5
He WILL eventually wean, and as long as you're happy with it most of the time, I definitely wouldn't worry :)
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Katie, blessed wife to Tyson and mom to all girls! Bailey (7) Riley (3) and Rory (3/17)
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Chari
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| Posted: Aug 22 2008 at 6:06pm | IP Logged
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WOW, you DO have a WONDERFUL pediatrician!
I have no special needs kids, really.........but I HAVE had some normal 2 yo who liked to nurse through the night.  Quite a few actually. 
I agree that since your fella is behind developmentally, it could easily mean he would also be a late nurser as well.
sorry, no actual help...but just to let you know.......even non-special needs kids need extended and frequent nursing......even if it is out of habit  .......or because they need that special close-ness with their moms who are busy all day
Blessings!
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mom3aut1not
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| Posted: Aug 22 2008 at 7:31pm | IP Logged
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I nursed all three of my ASD children (and my only non-ASD child as well) as toddlers. They did all eventually get weaned albeit with some gentle pushing when the nursing had dropped to once a day.
I should add that my middle ASD child really seemed to need me as her "nest." So I don't regret my extended nursing. I did try to add in some extra cuddle/comfort time to help the transition when dropping that last nursing time. I also stay nearby when a newly weaned child goes to sleep. It seems to help. (THen it transitions to read aloud time....)
 My youngest ASD child who is the most impaired occasionally asks to nurse. I just tell him it's all gone -- and it is. It's been years since I nursed him, but he remembers. 
In Christ,
Deborah
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Karnak
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| Posted: Aug 23 2008 at 9:03am | IP Logged
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I agree with you Deborah. If your kid needs to breast feed and it doesn't worry you why stop. Most kids normal or special needs eventually stop.
My ASD son stopped at about 2.5 or 3 I have forgotten and it was a mutual stop which made me happy. If you kid is premmie and a slow developer he like most special needs kids is emotionally younger than his normal peers and is probably at the right stage for his emotional age. You can limit nursing to home if you are worried about what people think outside. You need to do what is best for you and your son not what others think
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Karnak
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| Posted: Aug 23 2008 at 9:08am | IP Logged
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HI Sharon
I also wondered if a lot of his nursing is for comfort would a dummy or pacifier as you Americans call it help him with comfort and make it easier for you to wean him. Maybe he needs the comfort of sucking or would he suck his thumb? Does he have a comfort object like a teddy or a blanket that he likes to hold at night, if not can you get him to take one. My ASD son of 7 has a rubber snake for "woggling" to stim on and his teddy bear Beary in bed at night.
Karnak
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sailormom
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| Posted: Aug 23 2008 at 12:20pm | IP Logged
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No, unfortunately he doesn't have any other soothing techniques, including things like pacifiers or blankies.
We've had some success though, since I originally posted this. He was hospitalized a few weeks ago for testing, and in the hospital, we started telling him that he could "nur" (his word for it! ) after he had his medicine. Since the meds are so routine for him, it was an easy thing to "hang" the nursing on.
As a result, he's cut down on his daytime nursing considerably.  We also switched his medication to one that actually does help him sleep at night, so he's sleeping a bit better and nursing less.
Our neurologist also encouraged us by explaining that he sees lots of kids in his practice who are extended nursing. My older son weaned when he was over 3, but I never worried about weaning him. I'm more anxious about my little guy because he's SO dependent on nursing.
But things are now looking much, much better! :D
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Willa
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| Posted: Aug 23 2008 at 1:53pm | IP Logged
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My special needs child was on a G-tube up till age 6. I would have loved to be able to nurse him, because I do think that nursing is one of the best attachment methods going, and attachment is one of the best methods for working on behavior and development that I know. Plus extended nursing has wonderful benefits for development of eye strength, oral motor development, intestinal health, etc.
I tried all sorts of ways to fill in for that missing nursing bond with my child -- I "wore" him in a sling, I lay down with him when he was getting his tube feedings so I could look into his eyes and hold his little hand, and so on. But nursing does all this naturally. So maybe if you think of it as therapy, and a kind that only you can provide?
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Willa
hsing boys ages 11, 14, almost 18 (+ 4 homeschool grads ages 20 to 27)
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4 lads mom
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| Posted: Aug 25 2008 at 11:10pm | IP Logged
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Oh Willa, How beautiful!! I am on g-tube kiddo number two....and I also would LOVE To nurse....BUT...I had one wean when he was 3 1/2 yrs old....and he didn't self soothe, had some anxiety issues as well, and it was hard. He finally did, and you know, I don't think I could have done it much sooner.....he just wasn't developmentally ready!!!!
Hang in there, Sharon, you are a great Mama!!!!
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helene
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Just chiming in to say Sharon and Willa you are great Moms!
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tntreefarm
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Hi Sharon,
My nearly 18 year old son who has Down Syndrome nursed at night until he was about 5. It wasn't all night, just a little nursing to sleep or just a couple minutes, then cuddles to sleep. I can understand how exhausting it can be to have an all night nurser or screamer when you've been doing it for 2 1/2 years. I tried to judge my son mostly by where he seemed to be developmentally. It was also around 5 that he was potty trained. I do remember at one point we felt he was ready and we pushed the going to sleep issue a little further and there were a few nights crying himself to sleep. He's never been an easy child, but it did work out- just not as soon as I'd have liked it to. He did not have any health issues- just a "my way or no way" personality.
It sounds like your little guy might need your nighttime parenting a little longer, if you can manage it. Hope you figure out something to get through. I'm rather burned out after nearly 18 years of special needs parenting- keeping your energy level up for the "marathon" is different than toughing it out through the "sprint" that most people do with more typical children.
God Bless You,
Cathy
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4Real Forums : Special Blessings
Topic: Weaning a special needs toddler?
