Scary, Sad or Just ME

[bookwormde]

I am trying to figure out if this thread ends up just sad, scary (for our kids) or if it is just me.

http://www.disboards.com/showthread.php?t=2544763



I run into people all the time who do not understand our kids with hidden disabilities, but for the most part it is from lack of knowledge and/or fear and nothing else, but upon occasion......
Just doing a reality check with other parents
Thanks
bookwormde

 

[Kat77]

I was bothered by it. It baffles me. I do not think anything productive will come out of arguing over it.

 

[J'aime Paris]

WOW...
I had many replies lined up for that thread, but chose to remain silent. "Someone" seems to know all the rules and the jargon, but doesn't seem to understand people at all.

I work with children with all sorts of "hidden" disabilities. My biggest respect for the the parents of these precious little souls. It's a long, hard road they must travel through life.

Just know that there are some people who "get it"

 

[GraceLuvsWDW]

I think sensitivity training for people in these positions should be a three hour flight sitting next to a person with a "hidden" disability (or "emotional" as she put it ) from boarding to deplaning. That would give him/her a better understanding of the issues these parents are dealing with!

 

[Luv Bunnies]

Sometimes I think people who work with the public are so programmed to follow the rules that they can't seem to make adjustments when they're really necessary.

When we were flying out of Orlando a few years ago, we had a little problem with my my DS15 w/Asperger's (he was 11 at the time) going through security. On his plane ticket, I had listed the full version of his first name. He much prefers the shortened version of his name and tells people that that's his real name. The security agent looked at his ticket and asked his name and he gave the shortened version. She got annoyed and asked him his name repeatedly. I told her he was autistic and she said, "I don't care. You should get him a picture ID if he's going to be like that." I thought she was very rude. I understand the need for the passenger's name to match the ticket, but he was just giving his name verbally and I, his mother, was there to verify his name and identity.

I have learned now to put his shortened name on his ticket so it won't be an issue. But, when he does get a picture ID someday, I will have to list his full name and he will have to learn to say it without complaint (we're working on that one!).

 

[CajunMomof3]

Personally, I thought it was just sad.

My son has autism, and despite years of therapy for him, training for the whole family, and a Master's degree in the field for me, there is not always a way to predict what will set him off and lead to a meltdown.

I can't begin to count the number of times I have been given advice or loudly commented upon by others. I have had to learn that I can't fix everyone... So I reply when it is feasible, ignore it when it isn't, and fantasize about wearing a t-shirt I saw that says: If you don't have a child with autism, keep your parenting advice to yourself.

 

[CajunMomof3]

I think sensitivity training for people in these positions should be a three hour flight sitting next to a person with a "hidden" disability (or "emotional" as she put it ) from boarding to deplaning. That would give him/her a better understanding of the issues these parents are dealing with!

I LOVE this idea! I think it would definitely be an eye-opener!

 

[mcraft17]

Personally, I thought it was just sad.

My son has autism, and despite years of therapy for him, training for the whole family, and a Master's degree in the field for me, there is not always a way to predict what will set him off and lead to a meltdown.

I can't begin to count the number of times I have been given advice or loudly commented upon by others. I have had to learn that I can't fix everyone... So I reply when it is feasible, ignore it when it isn't, and fantasize about wearing a t-shirt I saw that says: If you don't have a child with autism, keep your parenting advice to yourself.

I agree with wanting to wear a shirt/ or pass out cards. My dd (14) has Asperger's and last year at Hollywood Studios she had a major meltdown, sat down on the ground and wouldn't budge. You should have seen the stares/dirty looks. One guy was especially rude in his comments and I even told him she had Asperger's and he was like "so what". It is easy for outsiders to look at us/ our children and think they would do things differently, or their child wouldn't act that way, but until you have walked in the parent's shoes you have no idea.

 

[CajunMomof3]

mcraft17- Hope you guys have a great trip!

I ended up going with the less "in your face" shirt. It says "If you think my hands are full, you should see my heart" and has the autism ribbon on it. I may wear it on my next trip...

 

[KPeveler]

I agree, it bothers me - but unfortunately ignorance and attitude are not against board rules...

I HATE the terms "real" and "fake" disability. Makes me all twitchy.

I hate people who think that we need accomodations because we just dont "feel like" learning coping skills. There is a reason I generally ignore boards other than this one!

 

[Schmeck]

Actually bookwormde, it is you - you instigated quite openly on that thread, and got the response you were digging for. Your interpretation of situations can be very narrow, and that leads to confrontation.

 

[bookwormde]

Thanks everyone
It helps to know that many other see it for what it is.
bookwormde

 

[mcraft17]

CajunMomof3- thanks, we are getting excited for it to be here. DD has been marking the days off of our countdown calendar. I like that shirt idea, that way it doesn't sound rude and reiterates how even on our rough days we love our children very much!

 

[CajunMomof3]

CajunMomof3- thanks, we are getting excited for it to be here. DD has been marking the days off of our countdown calendar. I like that shirt idea, that way it doesn't sound rude and reiterates how even on our rough days we love our children very much!

I live in TN so you may see me around in it- LOL!