Can anyone please help me think through a special weaning situation?

Bride2bMO · July 2011

I'll try to be brief, there is lots I could tell you. But I am tandem nursing. It was never my intention to nurse #1 so long (though I don't judge and know several people who've gone longer). He turned 3 in March.

Here's the thing, he has special needs, possibly autism (we are on long waiting list for developmental pediatrician, but he's been in EI and the special school district). I really don't think he will ever voluntarily give up the "booies." I say no quite often, but he begs to nurse all.day.long. He's been overly dependent on nursing since the beginning, and still doesn't have age-appropriate self-soothing skills.

It doesn't help that he is very underweight due to aversions to most foods. It's a bit of a chicken and egg thing -- I don't know if he wants to nurse so much because he's starving or if he's not hungry for food because he nurses, or if one has nothing to do with the other. He's 27 lb and ranges between -3 and 3% on the weight chart.

Baby #2 just turned 1 and has a much different (more typical?) relationship to BFing. He's a fan, sure, but I think I could probably use the tactics that failed with DS (don't offer, don't refuse). He is a fantastic eater and hefty baby. I do not worry about his nutrition post-weaning.

I can't nurse #2 without #1 wanting it, too. I don't give in unless I want to, and when I don't, he has a big meltdown. Big.

I'm starting to wonder if it will ever be possible to wean my oldest without weaning my youngest at the same time. This makes me feel guilty, but their nursing years are certain to be inequitable regardless because I am definitely NOT nursing the youngest over 3 years. I would like to get pregnant again by this winter, and my cycle hasn't even returned (I haven't night nursed either of them for 6 months).

I am not enjoying nursing my oldest anymore. I get the creepy crawlies, and now that he is quite talkative (thanks to lots and lots of speech therapy), he regularly embarrasses me in public or in front of my very conservative ILs (who we are pretending don't know, but I don't know how they couldn't). Perhaps because of his special needs, he can't keep it to himself. It has been the first thing out of his mouth to people, "This is my mommy, she has BOOIES! I wanna nurse!" :P

We do have various supports, an OT, SLP, SPED teacher, but I can tell that they are not the extended BFing type and I don't think they'd have much advice. We are not under the care of a developmental pediatrician, yet. His regular pedi, his neurologist, and various GIs don't seem to have the behavioral insight to my son that would help with this issue.

So, has anyone been in a remotely similar situation or care to weigh in from what little of the long story I've shared? I feel quite lost and this is one of the few places where I don't imagine people's jaws are dropping at the mention of a nursing 3 year old. Thank you!

radak · July 2011

First, Wow, you are an amazingly dedicated and loving mama. Second, I think you need the help of an expert and that I am not, nor have do I have any personal experience with the situation that you are facing. I am guessing though that there is a large community of mothers with autistic children that have faced the same things you are talking about. I am guessing an autistic child's propensity for routine makes any changes, especially one as big as weening a challenge, and also an autistic child's textural gratification is also probably satisfied by the breast which would make weening all the more challenging.

I think a mama's gut is the best thing, and you have to trust that. It seems your gut is telling you you need to ween without taking away the nutritional value of the breast milk. Maybe you could at least try to transition to a bottle. I am guessing you have tried pumping and bottle feeding. I am also guessing because it is such a different experience then breastfeeding and texturally different, that 3yo won't do it.

Can you try to associate the bottle feeding with a textural item that your 3yo loves? maybe that will help? Maybe you can also hold the 3yo in the same manner you would when breastfeeding to see if you can simulate the experience the same way. I don't know. I really think you need to seek an expert opinion. Are there any autistic message boards you can go to?

Good luck mama.

ananas19 · July 2011

I don't have any advice to offer, but wanted to say that it sounds like you're a great mother and that's what counts. I hope you are able to find a solution that works for everyone in your family. Best of luck mama, and many hugs!

Dreamsicle23 · July 2011

Are there any drinks he loves, but are generally off limits? I'm thinking pre-packaged chocolate or strawberry milk or something horrible and sugary like Hi-C. I know bribing is generally frowned upon but I think you might need it to get over the initial hump. Also, have you ever been separated for a few days? (Don't know if that's do-able or not due to his special needs.)

cocadoll · July 2011

I am really just a lurker here, but I wanted to help. I am a part of LLL (la leche league) and was wondering if you mind me sharing your story in hopes that some of moms or LC have advice for you? I would post your story, but only moms and members of our local LLL will have access to see it.

Dreamsicle23 · July 2011

This forum looks like it fits your issues as well

https://www.mothering.com/community/forum/thread/910394/child-led-weaning-and-cognitive-delays-weaning-an-autistic-child

PS - I never got your PM from a while back. I think the Bump ate it.

Bride2bMO · July 2011

Cocadoll, yes, by all means! I'd love more opinions. My cousin is a LLL, too, and I've picked her brain a little. She's always been very helpful, she's so knowledgeable. But I'm not sure she relates to my desire to wean. Hers have all self-weaned older than age 3, and that's totally cool for them, but it's farther than I'm willing to go. Dreamsicle, no worries! I was just responding to a super old PM you sent me, and basically said thanks for your nice PM.

rboisvert · July 2011

Wow. I am a special ed teacher for children on the specturm. My gut guess is that nursing has become his "stim". And the more I think about it's acutally one of the more functional stims I can think of. If this is what it is my guess is you are facing a long road but really you are looking at finding a replacement behavior. You might even look to find a replacement behavior that isn't food related, a different soothing technique. I wish you luck.

Bride2bMO · July 2011

rboisvert:
Wow. I am a special ed teacher for children on the specturm. My gut guess is that nursing has become his "stim". And the more I think about it's acutally one of the more functional stims I can think of. If this is what it is my guess is you are facing a long road but really you are looking at finding a replacement behavior. You might even look to find a replacement behavior that isn't food related, a different soothing technique. I wish you luck.

This seems very possible to me (that it's a stim). It's been his "everything" his whole life. Which is why I think I may need to wean my youngest with him and say the milk is all gone. I appreciate the comments so far. There are so few people IRL who I can talk to about this. I hate that something so important to us has become a source of anxiety.

WiggleBaby · July 2011

you are amazing. i wish i could offer some sort of amazing helpful advice, but i only have a 2.5 year old that i'm trying to wean now so i dont have a lot to offer. like the pp said, we used juice boxes while trying to cut down on weaning at various times (first thing in morning, after nap)... sure she had a lot of juice boxes for a while, but now that she doesn't ask to nurse anymore, we dont do that 'treat' anymore.

have you tried posting on the special needs board? i dont know if any of them might have advice, even if not BF'ing related, they might be able to offer advice on transitioning to a different 'stim'/calming behavior.

best of luck to you!!!!!!

Harper'smom · July 2011

I feel for you. DD weaned, with very little resistance, at 28mos and that was hard. I can't imagine being in your shoes. It is awesome you have continued for so long. I don't think it is a bad idea to wean both at once if you are ready if you think it is the best choice for your family as a whole. I beleive you said you are waiting for some therapy? I wonder if this is something that you can tackle with your son's therapist. I'm sure you could use the extra support. Please keep us posted and feel free to express yourself here if you need an outlet for your emotions.

superMiller · July 2011

I have no clue where I read this - I think it was on a thread on Facebook, so either the Leaky B@@b, Kellymom, peaceful parenting...something like that - but there was a discussion about weaning the younger child before the older one. For various reasons there were mom's who had all weaned their younger kids first. It's not out of the question and sounds like it may be necessary for your situation. Like everyone else said - you're doing a great thing for your child I can only imagine what you're going through socially. I get enough sideeye and my son is only 8 mos. But I read this and it helps me to combat some of the negativity:

https://www.kathydettwyler.org/detwean.html

cocadoll · July 2011

Ok, here are some of the responses I got. I will just post them all regardles of whether or not I thought they would help. I know most of the responses were from actual LC. I am not sure about one of them because I do not know her as well. Hope that helps.

Oh my! This mama has a lot to think about! I think the 3 year old still has a NEED to nurse. But this must be balanced with the mother's feelings. She must consider that something (more of herself) will need to be a substitute for this special needs child. He has a need, she is meeting (with resistance at times) it is not going away and will need to be replaced. Is there a father that can take over lots of physical attention and snuggling? Maybe the mom would feel better about continuing if she met other mothers who had nursed into toddlerhood or read "Mothering Your Nursing Toddler". Carla

Ginger, I do feel for your concerns. I am a mom that did not intend to nurse toddlers but I had a difficult time weaning my first one so I ended up tandem nursing. Both of mine weaned after their 3rd birthday, more by the fact that I want...ed the nursing to end in a mutual way. This worked well for my first and not very well for my second. I don't have any words of wisdom but I'm sure you will find someone on here that has been in a similar situation and alot of support and understanding from like minded moms. Good Luck,

oops, I did read that it was not you but forgot as I was writing....hope you have some luck finding her some assistance/ideas

I thought about this all night. This poor mama! Some children with speech delays have more complex oral motor issues. Maybe this is his resistance with eating more/different solids. To increase his solid intake how about nutritious other liquids such as smoothies. (You can hide all sorts of things in a smoothie to boost its nutritional content.) It is very unlikely that weaning will increase his intake of solids.

Sounds like great advancements in speech! This is a good time to begin setting limits for any child not just the nursing child. She could talk with him about a code word for "boobies" if that bothers her. She could offer to nurse before they leave the house and set a kitchen timer with an agreed amount of time. This mama might be amazed at what her child can comply with and understand and she might feel better about continuing to nurse with some limits. Also what about keeping SUPER busy and active? She might find the very busy schedule limits his nursing or it could backfire and he could need it more when they are home. She could also make regularly scheduled times to show attention and give positive touch in a non nursing way. Sometimes when nursing a toddler you get so "touched out" that you forget about loving pats, backrubs and hugs that do not invole nursing. I would love for her to come to a meeting or at least hear follow up about her situation.

futrkingsley · July 2011

I'm sorry you are having such a hard time. I think I'd try some of the suggestions here (code words, time limits, nursing before leaving), while you wait for the dev pedi appointment. A LLL meeting would also likely be a good resource for you as you try to wade through this. No one there is going to look at you strangely for continuing to nurse two kids, nor for wanting to stop on your own terms.

I am also nursing an older toddler. He's three. He too has always been all about the boob, and he also had a speech delay, though we don't believe that he has ASD or the like (though I suspected it at various other points and it was ruled out). It is sometimes his only (or maybe his best) method of "self" soothing. Sometimes it makes me insane, sometimes I refuse, and sometimes it's the only thing that holds it all together.

You aren't alone and you are doing an amazing thing despite how it makes you feel. I hope you get some great advice that helps all three of you work through it together.

ClaireBennett · July 2011

I am a special education teacher and I'm gonna throw some ideas at you... One- a picture schedule might help. Where you can show him his day in simple pictures, as detailed as you think he'd need with a special place/picture for nursing. If he asks to nurse, you can show him that breakfast, changing clothes and whatever come first. Don't know if that would help him to visualize his day. We've had parents put these on the fridge, a velcro strip in the car and one in their room. The velcro allows you to move events around. Two- Give him a binder ring of pictures with special treats on them (flavored milk, juice boxes, fruit snacks, things you can have in your bag and nursing, which you can eventually remove or only add for certain times) so he can choose one of those things when he feels overwhelmed. Three- you can create a social skills book(s) with simple pictures, or even pictures of himself and his brother, explaining what we do with our day, how we introduce ourselves (sans boobie talk), etc. to structure his interaction with new people. It sounds like he might get nervous around others and immediately announce his intent to nurse. Also, it sounds like his vocabulary is really good and you are an awesome, patient, devoted momma!

Bride2bMO · July 2011

I am sorry I'm just now responding. You all are so wonderful to take the time and thought to help. Great ideas to work with here. He has responded well to picture schedules and social stories, I should make some of my own. Also, I felt "touched out" the day I wrote this post, but no, it's not all bad. I feel really good about the nutrition angle. He got carsick yesterday but refused all liquids all day. If not for nursing, he'd have been dehydrated and sick. Thanks again, I plan to keep you updated.

Mrs. TLC · July 2011

Dreamsicle23:
This forum looks like it fits your issues as well
https://www.mothering.com/community/forum/thread/910394/child-led-weaning-and-cognitive-delays-weaning-an-autistic-child
PS - I never got your PM from a while back. I think the Bump ate it.

wow - even though this is an older forum post- it DOES sound perfect for this mama's situation - nice find ,Dreamsicle!

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