I have a9 year old daughter that has rett syndrome. Granted it's a mild caseand she's been having more good days, but it sucks big time when people say she's normal, there's nothing wrong with her, maybe it's her diet or you need to see a herboligist to cure her. I'm tired of explaining all of her struggles and everything we have tried to help her function. How cani politely get these people to back off without them offering more advice? I have told a few people they are welcome to take her for a few days and try their methods, plus i hope they have some good headache medicine for when she has her meltdowns lol
This cant be easy for you. Hugs ! Have you thought about not explaining yourself anymore? And then, "We're consulting with medical experts and while it isn't simple or easy, we're going to stick with that."
Wow. Just googled this. I think you need to come up with something simple that you can learn to repeat easily, something along the lines of the above. This isn't something that most people have probably ever heard of, I know I hadn't. Hugs and good wishes to you and your girl.
What's wrong with you?? Your cheese done slid off its cracker?!?!
Don't be so polite? Start out as Stryder suggests, "Thank you for your concern, but we are working with qualified medical experts and have the information we need.". If they persists, drop polite and say "Look, our diet is none of your business". Don't worry so much about being polite...the folks pushing you aren't being polite.
Everyone playing amateur dietician and armchair herbalist pisses me off too, and I'm not even dealing with a serious health issue like you are. It's the new religion...everyone proselytizing.
When it's about a horse, we say "thanks for the ideas, but we're on a program that's working for us." Sort of a "well, bless your heart" equivalent.
Are there parent groups in your area that you can turn to for support? or maybe those are the source of the well-intentioned but crazy advice? Rett's is tough and I would imagine it might help to have friends who "get it."
I wouldn't even give a sentence of explanation, if I were feeling grumpy. I would just say "Thanks" and repeat that as many times as needed. Even if "thanks" is not an appropriate answer to the question being asked.
"Have you looked into herbal medicine?" "Thanks"
It still is polite while very clearly making the point.
If I were less grumpy I'd give one of the answers suggested above.
Lol a squirt bottle would be funny especially the looks on their faces! Thanks everyone for the ideas. The recent people with suggestions is my boss's daughter and my supervisor. That's why i TRY to be nice about it. You should see the looks and hear what is said to me from the elderly. I don't look my age and they think i'm a teen mom with an unruly child lol
I can understand your fustration but maybe these folks realize how difficult your situation is and are just trying to offer something that might help. That's why I'd just smile and politely say we are working with her doctor on her treatment plan but I appreciate your concern.
Hugs to you, it takes a special person to take care of a special needs child.
I like Styder's response - got a medical professional and we got this covered. thanks. Sure, people may not know what the situation is,w hich is why it would be great if they would find out before offering totally unsolicited advice.
If I was crabby, i'd be tempted to ask if they have MD after their name and if they specialize in childhood neuro disorders. If they say yes I'd take their card, if they say no, I would be very confused as to why they were offering advice.
Don't get me started on the ignorant whack jobs who talk about "curing ADHD with diet". Well intentioned, may be, but it would be like me offering treatment suggestions to a cardiologist. Just thinking about it is likely to lead me back to the forgiveness page...sigh.
That's a good idea about the donations. A few people have looked it up. Her teachers did research it so they know exactly what they are dealing with. I feel bad for her because people aee afraid of her because of her disability, so she doesn't have many play dates. I just hope she doesn't lose her ability to walk and talk