update: weaning special needs child

Bride2bMO

So, since I last posted here we did get to see the developmental pediatrician due to a cancellation. Our 3 year old son was diagnosed with autism. Neither of us were surprised, and at first we kept telling ourselves "no big deal, nothing has really changed here." 

But of course we are learning that things will be different, particularly in our strategies. In retrospect, this has touched every aspect of parenting him and helps us understand why we could never find our way. Our style has been a mish-mash of everything from attachment parenting to CIO for the sleep problems that we still struggle with. Nothing was ever terribly effective.

Anyway, back to the point of the post, we were very open about the breastfeeding and she didn't bat an eye at this. But she also said she would not expect him to ever self-wean. While she said there is no rush, pinning our hope on him one day letting go on his own is probably unrealistic. So that kind of sucks. For years, I am always amazed and very jealous when I read about "easy" weaning stories.

In the meantime, I'm going to continue. She said that trying to keep it to 3 times a day or less would be ideal. It's good that we do not nurse to sleep. We got through that tough milestone around age 2.

We are supposed to find an ABA therapists, not sure if that will happen through the school or privately, but she said that ABA is probably the best approach to weaning him (as well as working on eating, dressing, pottying and all the other adaptive skills he's struggling with). He already has an IEP that includes speech, OT and SPED services, so this will be in addition to that.

One question, which I may ask the SN board, too, but I know there are extended breastfeeders here. Would you be nervous about sharing that information as part of his school records? The diagnosis letter from the pediatrician is very comprehensive and includes this information. I'm sure we'll need to submit the letter to alter his IEP. Should I ask her to rewrite it to omit the breastfeeding? I worry about privacy issues affecting us down the road -- embarrassing my son, or discriminating against us somehow (adopting a child someday is not out of the question -- would the fact that I breastfeed my almost 3.5 year old be considered negative? If some agency worker thought it was deviant, which I know it's NOT.)

Thanks for letting me talk it out here.  

WiggleBaby

i am so glad you got into the specialist sooner, and that you have a diagnosis so you can move forward with therapies, etc.  i'm sorry that the easy weaning might not be in the cards for you (and i feel bad for posting our easy weaning story below...).  but you WILL be able to do it, it will be just another hurdle that you will cross - and kudos to you for continuing with it for now.  what a comfort it must be for him.

i have no clue what i'd do about the paperwork... hopefully someone else has some ideas about that.  good luck!

ToastieSimons

That's a tough one.  As a mom of a SN child (we couldn't BF so it's not the same) I do ANYTHING I can to keep my child comfortable and happy and confident in our relationship.  That is the role you have been fulfilling for 3years with BF.  If you feel the need to share, I would present it as that.  That to keep his anxiety to a minimum you are still comfort nursing and you would like help redirecting that comfort so that you can successfully wean him.

I would talk to a therapist, maybe ABA they may offer advice on how to successfully wean.  I think it's something that you're going to have to do sooner than later because kids on the spectrum have a hard time with change and when their desired routine isn't met. 

Can you make story books and talk to him about it?  Maybe post on the SN board and ask for advice.  I don't think this situation will be that similar from what others have gone through.  Your son wants to nurse.  When he doesn't nurse it ruins his routine and everything he expected.  Ask how others have dealt with this situation in other forms, not necessarily nursing.

rboisvert

The report your Dr. wrote is what is considered PHI (protected health information) and while yes you'll want to include it in his record for increased services fewer people than you'd think will ever see it.  I am a sped teacher and while I see the reports I really just skim them for the information I am looking for.  I can't think of any way that a case worker for a future adoption would ever see this unless you volunteered it.  You must sign a release for the Dr. to send it anywhere (you can give it to whomever you want) and the school CANNOT send it anywhere without your written permission and often not even then because they didn't generate it.  Good luck with finding your way down this new path.  It's great you got your dx when you did and can begin getting your son the services that he needs.

Bride2bMO

WiggleBaby:

i am so glad you got into the specialist sooner, and that you have a diagnosis so you can move forward with therapies, etc.  i'm sorry that the easy weaning might not be in the cards for you (and i feel bad for posting our easy weaning story below...).  but you WILL be able to do it, it will be just another hurdle that you will cross - and kudos to you for continuing with it for now.  what a comfort it must be for him.

i have no clue what i'd do about the paperwork... hopefully someone else has some ideas about that.  good luck!

Don't give it a second thought, that was not directed at you. Most people have an easier time, so I've gotten used to it. I have always gotten the advice, "drop a session every few weeks," to which I say "what sessions?" He just paws at my shirt (or now asks "nurse? nurse?") all day long. I either give in or I don't. But he's never really been satisfied with a limited number of sessions.

We've definitely got some work to do...but oh, to know I can have my boobs back eventually! On the plus side, nursing 2 means that at 12 months PP, I still have no periods and I can eat like a horse and have lost the baby weight. Silver lining!

mkaltsas

I'm a social worker and I have a lot of autistic children on my case load. As for the paperwork side of things I really don't think including it will make a huge difference. I read about a lot of similar stories from the AEA records. We do what is called a "social history" for our consumers that may go out to providers that may give the family services. I would say the only time I have included that is if the provider needed to know that when you talk about their diets or any special instructions. Or if you were trying to wean, might include that but that is for a short amount of time as that is updated each year and then it would be changed.

WiggleBaby

Bride2bMO:

WiggleBaby:

i am so glad you got into the specialist sooner, and that you have a diagnosis so you can move forward with therapies, etc.  i'm sorry that the easy weaning might not be in the cards for you (and i feel bad for posting our easy weaning story below...).  but you WILL be able to do it, it will be just another hurdle that you will cross - and kudos to you for continuing with it for now.  what a comfort it must be for him.

i have no clue what i'd do about the paperwork... hopefully someone else has some ideas about that.  good luck!

Don't give it a second thought, that was not directed at you. Most people have an easier time, so I've gotten used to it. I have always gotten the advice, "drop a session every few weeks," to which I say "what sessions?" He just paws at my shirt (or now asks "nurse? nurse?") all day long. I either give in or I don't. But he's never really been satisfied with a limited number of sessions.

We've definitely got some work to do...but oh, to know I can have my boobs back eventually! On the plus side, nursing 2 means that at 12 months PP, I still have no periods and I can eat like a horse and have lost the baby weight. Silver lining!

 good work being positive!  i know it's hard but i definitely gained weight since weaning.  BOO for that! 

Quazel

First of all, as hard as it  is, congratulations on a diagnosis.  As you said, it doesn't change anything but it does open up worlds of help and support.  And it sounds like you guys have been really proactive with getting services and your LO will benefit from that for the rest of his life.  On the other hand, I am sorry, though logically it makes no difference, I am sure it is still very hard to hear.

As for the nursing, I am a teacher who has worked in both an autistic class and a severe class.  Disclaimer: I worked at the high school level so it may not apply.  I was the music teacher so I came in one period a day.  The teachers and aides in the classroom knew a LOT about what went on at home and speculated about what they didn't know.  It was a class of three combined classes and all three sets of teachers were very aware of what went on and to be honest, they could be quite judgemental.  Again, this was high school, I have no clue how an elementary/pre-K class would be.  I think you should just decide what YOU are comfortable with people knowing.  If you don't mmind people knowing you are still nursing then leave it in there.  I am still nursing my 2.5 year with eating difficulties.  Once he was over a year, I started feeling uncomfortable telling people.  Over time though, I was able to make the decision that I am taking care of my LO and meeting his unique needs the best way I knew how and I should be proud of that.  I am now much more comfortable saying I am still nursing.  I think you are doing a great job recognizing your LO's unique needs and meeting them.  I am sure nursing is very important in your relationship and for a child who is prone to sensory and space concerns, I bet nursing is like therapy, I bet he is further along because of the constant physical closeness than he would have been if you had weaned.

BTW, my doctor said the same thing about DS not weaning on his own.  It broke my heart to hear it as well.  I so badly want him to make the decision and us to not force it but I think the pedi is right.  At some point soon I will probably wean, in part because of pressure from my DH, and it makes me incredibly sad DS wasn't able to make this decision on his own.  I feel your pain