Tough, tough, really tough situation (m)

[rockys]

My son will be four in November and has Autism. He has always been the world's worst sleeper. He is very high energy, probably hyperactive (if we are looking for additional labels). He is still nursing. He can't slow his body down to sleep w/o it. He still wakes up at night and has to nurse back to sleep.

I have tried just about everything to wean. My older son is multiply disabled and gets seizures if he looses too much sleep. My husband is a doctor and can't help me at night (dosen't think right w/o enough sleep). So, I can't be looking at endless screaming.

And then, I am pregnant. My first was born early b/c of preterm labor. So, I can't be nursing much longer b/c of the possibility of triggering contractions.

The options I have been presented with are (1) medicate him. I already kind of do. I give him Melatonin most nights (gets him to sleep but dosen't stay asleep) and Benedryl when things are bad. Medication now would be really serious stuff and I can't bear the thought of it. (2) putting him in his own room and locking the door all night. Two really, really bad options.

I have no one to talk to about this b/c people either don't know he has Autism (he is high functioning, so we don't want to label him) or I just know that people will pass judgement about me still nursing.

Any thoughts. This looks and feel totally impossible.

Thanks

Raquel

[stockingup99]

Please have his mercury levels checked. Recent studies have linked immunization with a mecury containing substance to autism. www.909shot.com You might check the immunization pages at mothering.com forums. His age puts him in the set of kids who recieved the highest doses of mercury. Other autistics kids have made a full recovery once they renamed it mercury poisoning.

The nursing causes contractions so you must stop when pregnant myth has not been proven to be linked to pre-term labor. It is another bit of nonsense which the doctors spew. They err on the side of caution, thinking that weaning is no big deal.

I feel that mercury removal therapy will be a wonderful thing for your family. Just a feeling, but I hope this is the answer which may change your life.

Sue

[Isis]

I don't have much to add b/c I really have no idea what to tell you. I only wanted to offer you a & say what a wonderful mother I know you are!

[jeanine123]

I just wanted to give you this link for more info on nursing while pregnant. I'm sorry but I don't have any other ideas or suggestions other than to give you big and say that I'm hoping you're able to find something that works for everyone involved.

http://www.kellymom.com/bf/tandem/index.html

[TortelliniMama]

If the pre-term labor concern is the only reason why you're trying to wean now, then I would agree that you might want to do more research and seek out a second opinion. I'm certainly not qualified to say it's not an issue, but I do know that it's not necessarily a problem.

It sounds like you'd like to wean anyway, though, and it sounds like your life is plenty full of challenges, so I'm definitely not going to judge that choice. I'll give you the ideas that immediately came to mind.

Have you ever used Social Stories with your son? There's a description at http://www.polyxo.com/socialstories/introduction.html . Maybe if you wrote him a story about the other things he can do/ask you for to get comfort, it would help?

I've also known a lot of very visual kids with autism. If your son is very visual, you might want to wear something like stop signs or circles with lines through them on your chest. (Boy, that sounds silly, doesn't it? :LOL But I've known some kids who actually would have been helped by that.)

And, possibly it might help to really ritualize the nursing, and always do it at the same times, according to a schedule that you show him. Then you can change the schedule in front of him, taking out a nursing session, and make a new routine, then repeat this a few days later, and so on, until he's weaned.

Does he has an OT? Maybe he/she would have some good ideas for calming activities (weighted blankets/vests, tactile stuff, etc.).

Good luck!

[Ellien C]

There is a book called the No Cry Sleep Solution by Elizabeth Pantley that might provide you with some more options. I haven't read it, I doubt it's considered NFL, certainly isn't Family Bed, but from what I've read other places, it will certainly give you more ideas besides CIO and drugs.

[natashaccat]

Originally Posted by Ellien C

There is a book called the No Cry Sleep Solution by Elizabeth Pantley that might provide you with some more options. I haven't read it, I doubt it's considered NFL, certainly isn't Family Bed, but from what I've read other places, it will certainly give you more ideas besides CIO and drugs.

this book is really about putting you kid on a routine, not really sure how applicable it would be for an autistic kid.

[captain optimism]

Originally Posted by Ellien C

There is a book called the No Cry Sleep Solution by Elizabeth Pantley that might provide you with some more options. I haven't read it, I doubt it's considered NFL, certainly isn't Family Bed, but from what I've read other places, it will certainly give you more ideas besides CIO and drugs.

Sure, the No Cry Sleep Solution is NFL! Pantley is actually pro-family bed! (I know because I actually read the book!) Her tone in this book is perfect, she is accepting of co-sleeping and non-co-sleeping, nursing and non-nursing parents alike. A really great book! She also uses social stories for children who are typically developing. This is a great book, you will see it recommended up and down MDC. I'm not sure it fits the "weaning a four year old" scenario, though. I liked reading it because Pantley has such a supportive authorial voice.

I first learned about social stories from my friend whose son is also on the autism spectrum. I think that's a really brilliant idea! My friend's son has had great success with speech therapy and he has met all the goals on his IEP, every year. He is in elementary school now and is fully mainstreamed.

Are you getting speech therapy for your son? did you have Early Intervention? I'm concerned that you are missing an opportunity to help your child with the autism piece. From what you said it sounds like you are trying to hide that he has autism, but that can't be right? You can get a lot of support from other parents of children on the autism spectrum, they know about the discipline challenges.

On the weaning, my guess is that your best bet is La Leche League. I still haven't weaned yet either . I imagine that there will be a lot of challenges to doing it with a child on the spectrum. Your local LLL won't judge you for not having weaned and should have access to resources about weaning a toddler with autism.

I also want to say: it's GREAT that you are nursing a four year old. Please don't feel bad about doing something that is good for your child. Please don't feel bad about weaning, either. Be good to yourself, because you sure are being good to your family in all of this!

[MarcyC]

My son is also high-functioning autistic. Really, we don't even tell most people he's autistic because he's so high functioning. He's even been released from speech & occupational therapy, but still needs psycho-therapy, kwim?

Well, when he was three we went through this horrible sleep and discipline phase. It's a LONG story, but it was awful and brought me to tears most of the time. DH and I are totally against medicating him - never have. I ended up putting a doorknob cover on the inside of his bedroom door so he couldn't get out. It was an absolutely agonizing decision, but mainly it was for his own safety. Again, it's just a LONG LONG story! Anyway, for two nights he laid on his floor and kicked the door and screamed and ended up falling sleep on the floor next to his door. It was horrible for me, but we knew it was what had to be done. But two nights was it. That's it. It's not easy when you have a child with special needs. You sometimes have to make decisions or do things that you might not normally do. Those two nights KILLED me...but I'm sure he has no memory of it (I've even asked him if he remembers and he says no). Of course, 20 years from now, I'm sure it'll come up in one of his therapy sessions!

[rockys]

Originally Posted by stockingup99

Please have his mercury levels checked. Recent studies have linked immunization with a mecury containing substance to autism. www.909shot.com You might check the immunization pages at mothering.com forums. His age puts him in the set of kids who recieved the highest doses of mercury. Other autistics kids have made a full recovery once they renamed it mercury poisoning.

The nursing causes contractions so you must stop when pregnant myth has not been proven to be linked to pre-term labor. It is another bit of nonsense which the doctors spew. They err on the side of caution, thinking that weaning is no big deal.

I feel that mercury removal therapy will be a wonderful thing for your family. Just a feeling, but I hope this is the answer which may change your life.

Sue

We have had his mercury levels tested and they are fine. I also did not vaccinate him until after the autism was diagnosed.

Thanks though!

[rockys]

Thanks so much for your support! I feel like a failure because he is still nursing. I don't want to do it anymore. But, maybe there is still some good in it? All I know is that I am ready (and need) to stop.

I have read both Pantley books and have implemented many of her suggestions (i.e., lovey, pull-off, routine). No help. I will use them for the baby though!

I should clarify. We know he is Autistic and am giving him lots of services (OT, ST, music therapy, special needs and typical preschool, home ABA). We live in a small community here. I am not telling folks in our community b/c I don't want my son labeled by them if there is any hope of mainstreaming later on.

Thanks again for the support.

[Luvmyboyz]

I don't know if this will help....

but my friend's dd (5) is autistic. She attends a regular kindergarten and it is very hard to tell off the bat that she is autistic. She had horrible sleep problems and a doctor suggested putting a tv/vcr in her bedroom. My friend was totally opposed to kids having a tv in their room, she barely lets her children watch tv at all during the day. But out of total desparation, she put one in her dd room with some Baby Mozart type tapes. Her dd could use the remote and used the soothing video to help herself back to sleep. I oftened wondered if calming music might have the same result. This has worked for my friend and her dd now gets enough sleep at night to go to kindergarten.

I have no idea if this is "OK" but I thought I would share what is currently working for my friend.

Also, I would like to add that I nursed through a high risk pg and I completely understand your fears. I had bouts of contractions beginning at 15 weeks but made the choice to take things day by day and I am thankful that I did. Good luck and I second the idea of seeking out LLL. If you decide to wean or not, they are a terrific resource. Good luck!

[Isis]

Originally Posted by rockys

Thanks so much for your support! I feel like a failure because he is still nursing. I don't want to do it anymore. But, maybe there is still some good in it? All I know is that I am ready (and need) to stop.

I have read both Pantley books and have implemented many of her suggestions (i.e., lovey, pull-off, routine). No help. I will use them for the baby though!

I should clarify. We know he is Autistic and am giving him lots of services (OT, ST, music therapy, special needs and typical preschool, home ABA). We live in a small community here. I am not telling folks in our community b/c I don't want my son labeled by them if there is any hope of mainstreaming later on.

Thanks again for the support.

Why would you be a failure for still nursing at 4? A lot of women choose to do this and I personally think it is ANYTHING but negative. It's healthy and obviously something your son enjoys. I understand why at this point you need to wean and I respect you for doing this for 4 years!

I really hope you find something to help your precious boy back to sleep. I wish you a successful pregnancy. I sure hope other ladies here can help with some more ideas!

[G-Dawg]

My son is almost 4 and he is Autistic. We started having sleep issues as soon as he could climb out of the crib. Things were really bad for awhile. What we ended up doing was putting up two gates on his door. One stacked on top of the other. If we didn't do that, he would stay up all night and when he woke up in the night, he would wander all over and get into things and wake everyone up. Now we have a routine where he brushes his teeth, says prayers with us (listens and kneels anyway) and he actually goes and gets into his bed. His dad sings him some songs and puts up the gates and he goes to sleep. This has taken some time and practice. He isn't high functioning. I believe that our kids can catch onto things, it just takes longer and it is harder!

I think the social stories would be a great idea! Have you tried Epsom Salt baths in addition to the melatonin? Those are so relaxing! It also helps my son a great deal to spend a lot of time jumping on the trampoline.

You are so amazing to be nursing a 4yo! You should feel proud of yourself. That is a huge accomplishment. Imagine how much that has helped him, especially with the gut issues that are so common in Autistic kids.

I really feel for you that you don't have night-time help. I could never do it. You must be exhausted.

Hang in there, you will figure this out. It will just take some time. Its not as impossible as it seems.

G

[callmemama]

I just wanted you to know you're not alone in nursing a 4-year-old. My son still nursed every night throughout "the 4's". After turning 5, he began to skip days, then weeks. We'll see if he's still nursing (however sporadically) in a couple of months when he turns 6.

[dancindoula]

You are so amazing to be nursing a 4yo! You should feel proud of yourself. That is a huge accomplishment. Imagine how much that has helped him, especially with the gut issues that are so common in Autistic kids.

:

This thread caught my attention because my 8yo cousin is high functioning autistic. One thing I was curious about: have you considered testing him for gluten or casien intolerance, or celiac disease? A lot of parents with autistic children have found that eliminating/replacing food triggers works wonders with helping them to sleep well and function better. It's not a simplistic or blanket statement by any means, but it may be worth looking into. I have seen fantastic descriptive articles on it in the magazine Living Without (tried to add a link, but they don't have those particular articles on their website right now. You would have to order the back issues, but I would be glad to pm you the volume #'s). Here is a link to search results on www.celiac.com for autism as it relates to food triggers: www.celiac.com/st_sresults.html?p_keyword=autism

Hope that helps a bit.

Peace and blessings to you and your family during this transition,
Aron

[rockys]

Thanks for your email. We haven't had him tested for celiac disease but we did do a trial of the gluten casein free diet. Five weeks. No real progress, certainly not in sleep. It was so hard and showed no real benefits, so we went off.

[MarcyC]

Fisher Price Aquarium

One thing my son got really attached to was his FP aquarium. I had a monitor in his room for a long time and I'd hear that thing going all night long!

[callmemama]

RockyS, we're vegan and did a gluten-free trial for several months - part of my family is still gluten-free. Even though my ds didn't test positive for celiac's (through the blood work), his tummy aches went completely away after a few weeks off gluten (in addition to our already dairy-free diet). I say this to let you know it just takes some getting used to reading labels and learning new recipes, then it really isn't that hard. There are many resources to help you if you're interested. It sounds like you're really overwhelmed right now - with good reason! You have support here.

[luvmy3boys]

Originally Posted by MarcyC

I ended up putting a doorknob cover on the inside of his bedroom door so he couldn't get out. It was an absolutely agonizing decision, but mainly it was for his own safety. Again, it's just a LONG LONG story! Anyway, for two nights he laid on his floor and kicked the door and screamed and ended up falling sleep on the floor next to his door.

This suggestion makes me very uncomfortable as a mother to a child with autism. How did you know your son wasn't having a meltdown when he was screaming and kicking? I realize autism presents itself differently in different children, but self-injuring behavior especially during meltdowns seems fairly common. Even the safest room (is there even such a thing in referrence to a room a child with autism is in?) can not protect a child from himself. Also, children with autism see, hear, feel the world differently than you or me, things are already chaotic for them as they try to make sense of the neutrotypical world, having a child with autism "cry it out" even if the parent(s) were somehow able to ensure the child would not injure himself it seems like a good way to set a family up for even more sleep issues (it seems as though this hasn't occured with your family, but I could see it as a real issue for other families who might try this approach).