Parents of kids with invisible special needs?

[smusiak]

fallowing

 

[Baklava]

If one more person tells me that my daughter, "doesn't look autistic" I am going to bite them.

 

[TheRustyScupper]

I just need some advice from people who have been there and understand.

If one more person tells me that my daughter, "doesn't look autistic" I am going to bite them.

.
1) Do not let it both you.
2) If your child has a valid problem, let others think what they wish.
3) People can be rude and cruel.
4) Especially if they think YOU are getting special treatment.
5) If you hear comments, just look at them and smile (a little "skip" in your step also helps).
6) Most of the time, this is more hurtful to them than swearing.

NOTE: I hate it when others condemn without knowing circumstances. I saw an instance that I thought was priceless . . . a woman got insults about her kid, who did not have a visible handicap. She just smiled and started to lowly sing "Heigh-Ho" as she passed by the offending person, She then muttered, not so silently, "We must be in the VIP line." That offender got red, red, red. What a great scene !

 

[happymommy]

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.

My daughter also has EDS. She now uses a wheelchair at Disney, as her ankles can't handle the walking.
I've found that folks at Disney are great. It's often extended family that sometimes just doesn't get it. I try to let it just go in one ear & out the other.

 

[DisneyOma]

It's a fine line people are being asked to walk - we are told to 'mind our own business' but then when child abuse or neglect happens, people are amazed that no one ever said anything about it! So I could see how someone who mistakenly thought an oxygen device/trach was a collar around a child's neck, and notified the police. Don't condemn someone for showing that they cared about your child's welfare. Be grateful people care enough.

Now, family members giving unsolicited advice - maybe once it would be acceptable (because we all get in a rut/blinded by daily stress, and miss things) but constant harrassment? Never allowed, but you need to speak to that person, explain what is going on, and then tell them you can handle things just fine without the "unwanted advice".

 

[ErinTwinmom]

All you can do is embrace your inner Elsa and let it go. I have tried the dress the parents in autism gear but the real jerks think that means you should try spanking.