Parents of kids with invisible special needs?

[ilovefh]

Any parents of kids with invisible disabilties/special needs that would be willing to PM me? We've just dealt with our first case of ignorance and I just need some advice from people who have been there and understand.

Thanks!

 

[Mum23]

You can PM me if you wish.

 

[Aladora]

Same here, feel free to pm me!

 

[gap2368]

I am not a parent but someone with a few invisible disability you can PM me if you would like

 

[theduhaimes]

I am a parent of a child with juvenile arthritis. I deal with ignorance often. Unfortunately, it is often from family. Please PM.

 

[nikkislaght]

fire away. I have a son with a number of issues.. plus I have worked with people with special needs for 20 odd years.. and I now work in an inclusive preschool with a birth to 3 program attached... hope all is well with you

 

[lilmissdisney216]

PM me as well! Don't have children but I do have some invisible disabilities and use a service dog.

 

[sleepingbean]

Happy to help if possible. Daughter has Ehlers Danlos Syndrome. She looks very healthy, but people cannot see, nor understand, that her joints are dislocating and she is in incredible pain. We have had wonderful experiences at Disney parks, though. If we have had rude looks, I haven't noticed them.

 

[MaggieMollyMom]

Absolutely! pm away!

 

[Princess Disney Mom]

You can PM me also. My daughter has autism and I've heard it all. As hard as it is just try to "Let it go". It's heartbreaking I know, but some people can be just terrible.

 

[Glittercat]

I had juvenile rheumatoid arthritis (diagnosed age 9), now have RA, and Ehlers Danlos (EDS), and though I've been in a chair a fair bit of life, have dealt with the "invisible illness" stuff too. In other words you're among friends , and if you decide to share your problem, many of us may be able to help.

 

[cornflkgrl]

Feel free to PM me as well. I'm happy to help or advise as best I can. I have "invisible" disabilities myself and I have two kids with multiple mental health dx and developmental issues with letters that cover half the alphabet. I have spent A LOT of time advocating for them. I know it can be frustrating at times.

 

[FeralCatRogue]

I do not have children with a invisible disability but have one myself. I have also had to deal with ignorance quite often while helping out with in-community placements for people I have worked with. Feel free to pm as well, though you've had quite a few supporters pop up already to help.

 

[ammag]

Definitely feel safe to share here! So sorry you had to deal with a terrible person,

 

[kaytieeldr]

May I suggest, given the large number of responses - instead of multiple PMs, perhaps start what would be a very helpful thread on the disABILITIES Community Board?

 

[seashoreCM]

Would it be a good idea ... would it be fair ... would you want to ... wear something that points out an invisible disability although with little detail or specifics?

Like a T shirt, which I have often mentioned in other posts, with printed words like "I can run, only to first base"? (Or second if you have a little more stamina.)

Like a fake bandage on a strategic location such as on a knee? (May be switched to the other knee the next day to not leave a suntan irregularity.)

 

[redberyl]

My daughter has both visible and invisible disabilities. You get rude comments either way. She cant walk far because of her heart condition, but people are constantly telling me shes too big for her stroller and i should just let her walk. From behind she doesnt look sick, and I once had a man call me an a**hole for abusing handicapped spots.She has an immune disorder, and even people who know about it all the time criticize me for being overcautious about germs. They insist she needs to "build up" her immune system, even after I explain why medically that wont work for her. But she has a trach for her lung disease, and thats just as bad because people constantly stare and ask rude questions, ehich upsets my dsughter. Once I had her hooked up to her oxygen via her travh, and someone called the police on me fir putting a leash aroynd my daughters neck. Its bad either way, visible or invisible. People need to just mind their own businedd

 

[seashoreCM]

... but people are constantly telling me shes too big for her stroller and i should just let her walk ... Once I had her hooked up to her oxygen via her travh, and someone called the police on me fir putting a leash aroynd my daughters neck. Its bad either way, visible or invisible. People need to just mind their own businedd

OT: Walking casts are not intended for walking long distances except when specific doctor's orders are given for so much walking.

You do not have to do what strangers say or to even do (follow through with) what you yourself say in cases such as this.

 

[ForeverAlice]

I agree with you redberyl... People should mind their own business but for some reason find their life's mission is to give their unsolicited advice/comments etc....

 

[FeralCatRogue]

I find that to be the worst when working in-community placements, I'm trying to get the people to feel a part of community and it tends to be questioning people that push them even more away.

@redberyl, wow I hope the police put that person in their place for wasting their time.