Any extended breastfeeders with special needs child?

[DJAngel]

I'm just wondering if there are any other mums out there breast feeding toddlers with special needs? I'm still feeding my 3.8 yr old dd2 who has Tuberous Sclerosis, involving epilepsy and learning disability due to multiple benign tumours particularly in the brain..and although it feels completely right to still be feeding for lots of reasons, I'm finding people are now being a bit judgemental about it (including new health visitor) and could do with any support/thoughts.
I wrote about my reasons for continuing with b/f in more detail in a thread about saturdays Guardian article about extended breastfeeding - don't know how to link to it I'm afraid - but I wonder if there any others in my position or have been? Or any others with any words of encouragement or wisdom.. I am happy continuing for now but I also don't know how I'll ever be able to stop if it's not initiated by her. DD1 self weaned at 18 months so that was fine but no signs yet of dd2 doing that..

What did the HV say to you?

My view is that if mother & child are happy then what's the harm.

DD2 self weaned at 17 months & I was gutted as I would happily have continued feeding her. She has Cystic Fibrosis and lost dramatic amounts of weight before she was diagnosed during which time GP & HVs did everything they could to get me to switch to bottle feeding. Once she stabilised my HV did come out with a few remarks about me having enough to cope with without breastfeeding as well, but I think knew better than to go any further

Do you think people are judgy because your DC has SN? or just because of her age? soory I haven't been able to find that other thread, so maybe you answered this already

What kept me going - and nowhere near as long as you - was not only the obvious health benefits for DD, but also for myself. It definately helped my own mental health to feel that I was doing everything I could, in the face of DD having an incurable & progressive condition over which I really had no control

Carry on feeding for as long as you and your DD want it - noone has the right to judge you

Mooching.. My new health visitor said

' oh god well we'll have to stop that then.. I have to tell you that she'll be getting nothing of any nutritional value at all from you now at this stage.. it's just for comfort..'

I was very cross.. The nutritional value is debateable in my opinion from stuff I've read and also comfort in any way shape or form is good for you!! Especially when communication is so complex with her .. It remains the most effective way of soothing and calming her.. I was supposed to contact HV as we may need her to write a report gor dd2 statement for school but I can't face it..

Also - I agree bubble it may be that the judgement is about both her being older and her SN but I'm not sure.. She is really tall as well so looks about 5 years.. I feel similarly to you in that I feel it is such a great thing I can do for her with everything she has to have done to her, and as you say none of which I have any power to make better for her.. This is something so precious. At the end of a really shitty day if I've been grumpy or stressed it helps to calm me as well as her! We have yet another MRI next week and I know that when we're in hospitals she is always anxious often very groggy and distraught and I can't imagine comforting her in any other way.. I see other parents using hugs and words and gestures and sometimes that works sometimes not.. I feel privileged to still be able to offer her soothing in the form of breastfeeding..
One day it will stop - somehow - and then I may be after some advice on how to manage that.. LeonieDelt you obviously managed it with your dd1.. I hope dd1 will make the decision for us.. but that's sometime in the future I hope..

I think I just needed to know that I wasn't alone out there and now I know I'm not so thanks so much..

That HV sounds uninformed and very judgemental, to be honest whether DD is getting 'nutritional value' or not is not the question, it comforts her and is doing her no harm at all.

Maybe you could choose a sign to show comfort and also bf so she will link them and should bf end she will be comfortable with the 'comfort' sign?