Why don't others "get it"?

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Registered: 03-26-2003
Why don't others "get it"?
13
Mon, 05-16-2005 - 1:04pm
I am so tired of explaining my ds to everyone including my dh and my il's.

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iVillage Member
Registered: 03-26-2003
Mon, 05-16-2005 - 2:07pm

I don't know why but I certainly do empathsize with how exhasperating it is.

I am getting better at getting a thicker skin for one thing so I really could give a care about what others think. Also, I don't know how to say this but to just say it. It is easier since Mike is more "noticably" different, KWIM? When he was younger he blended pretty well but now not so much. The other 2 do blend well but Cait was delayed so they understand that and I have told precious few about Dave actually. I just don't feel like dealing with the oppinions and criticism. But I have noticed that since they accept the one as special needs then they are more accepting about the others.

Honest, when people question about Dave's behavior, I might blow them off, make a sarcastic comment or just something to the effect of "I'm working on it". I have gotten pretty private about it and only tell on a need to know basis for now, especially since I don't know for sure what is up with him. Prime example. THe other day my mom and I were going to Lowes. We had to pick up Dave first and I mentioned a plan for the store so we could get what needed to be done. Mom says "by his age he should learn to behave with you in public", to which I answered "yep, mom, you'd think he would". Then I changed the subject. Believe it or not she got the hint too. Changed the subject but didn't give me a hard time when I had to take him for a walk while in the store.

I have to say, people are pretty oppinionated. WHen someone doesn't "look" special needs to them then often they mustn't be special needs. It is sad, but there are times when I wished that I had 1 child with more significant noticable needs than 3 with "invisible" disabilities.

Keep working on them, especially DH. DH's tend to come around eventually. I dont know what else to say then I understand and try not to take it personally. This is one of those things where you just have to get a real thick skin for.

Renee

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iVillage Member
Registered: 02-25-2005
Mon, 05-16-2005 - 2:36pm

I'm right there with you too!

Robbie is a smart and polite kid, so friends or teachers tend to overlook his issues and try to reassure me that he's really fine. I wish they could spend a few days with him to see what a hard time he has. On the other hand, I wish total strangers could understand why he has to hold my hand no matter where we go, why he hums all the time, why he won't sit still like the younger kids in church... all that stuff! MIL wants us to threaten him with no kindergarten if he won't poop in the toilet - as if that would solve anything, even if it wasn't so outrageous!

At least we've got each other!

Maribeth

iVillage Member
Registered: 05-03-2005
Mon, 05-16-2005 - 3:14pm

We have been, and still are, dealing with the same. Our 41/2 yo daughter AS/HFA is "just fine and will grow out of it" in everyone's eyes. My MIL insists she's fine and won't listen to what Professionals say. She started preschool 3 weeks ago, and since she is doing well, it's "see! I told you she's fine". I would like to for her to witness one of her 1 1/2 hr tantrums!! It's heartbreaking to know you can only do so much without screaming that there is a legit reason for the "behavior". Just focus on his needs and celebrate that he can get thru whatever situation is difficult for him. Easier said than done sometimes!! Hang in there.

Julie

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Registered: 10-27-2004
Mon, 05-16-2005 - 3:38pm
OMG do I feel your pain. I am so frustrated and completely overwhelmed. I am SOOOO tired of hearing "he'll just have to learn" or "he'll just have to learn to deal" or the worst "your gonna have to make him grow up" GOD SHUT UP YOU IGNORANT SIMPLE MINDED FOOLS!!!!!!!I want to help my ds but I get no support from anyone. Mil while not around much ( she lives 2500 miles away, thank god) is an instigator, I've tried explaining it to her but then when she's here ( and she is all this week, OH YEAH) she won't even let him finish a sentence and then goes all bi*&#y on him b/c his tone of voice is inappropriate, and then of course he gets upset and then she's at him even more, then when I go handle it, she wants to tell me I'M not helping him, or myself, oh PLEASE. Dh's grandparents say they are here for me but then they are just as bad when he's over there. What really ticks me off is everyone giving my ss all the attention b/c he's a suck up. He is "such a good boy" until he comes home that is, then he's all attitude and everything makes him mad, I've tried telling dhs family that he's manipulating them and of course b/c I'm stepmom they don't believe me, I just don't like him so I don't want anyone else too, blah blah blah.. The truth is I don't like him, he's two-faced and manipulative. I have to take a bunch of crap from him everyday but he always behaves around others so they all think he's an angel and ds looks horrible, b/c god love him he is who he is and he doesn't care who knows it.Ds gets my respect for that. He's trying and I don't know whether to laugh cry or scream most of the time, but he at least is not the incredible flipping personality kid like ss is. okay I had a really bad weekend and I am ranting sorry!
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Registered: 03-26-2003
Mon, 05-16-2005 - 3:40pm

Funny you mention the 1 1/2 hour tantrums.

My MIL's were the same way until one day when we were visiting they let DH and I go out for a date (this was pre-cell phone time for us 8 years ago when she was 3). When it was bed time they messed up the routine and she screamed until we got home more than an hour later. That was the first time MIL was a believer, lol. She could not get Cait to stop no matter what she did. She felt hopeless, nervous, etc. Gave her a bit of insight anyway.

Renee

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iVillage Member
Registered: 12-24-2004
Mon, 05-16-2005 - 7:39pm

Bari,

Sometimes people need to hear this stuff from an expert source, instead of the parent or person they know well. I would try to send books, articles, videos, or whatever to the people you keep having to explain things to. Steve Gutstein's RDI video, available at www.connectionscenter.com, is one of the best I've seen, but it is expensive ($150 for about 6 hrs of info). The NBC specials on autism were available on a free video, but I hear they ran out of copies. There are many short articles on the WWW and lots of books that might help, but I would specifically choose one that fits your child's characteristics well. Also, think about the learning styles of the people you want to show these materials to. My MIL has a rather severe form of dyslexia, which makes it hard for her to derive information in written form. I have had very good luck with getting her to view TV or video programs on autism, however, and watching these has really made her more understanding of Cassian's needs. Good luck.

Suzi

Avatar for sheila3xblessed
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Registered: 03-26-2003
Tue, 05-17-2005 - 12:02am

Oh boy, do I understand what you're saying. Just wanted you to know you aren't alone.

I too am sick of trying to explain my 5 yr old son (PDD, ADHD, SID, etc.) to others, especially family members. After years of this you'd think they would start to understand. And the older he gets, the more obvious it is that he's not a normal little boy. At age 2, 3, 4 he could appear to just be an out of control, immature, spoiled little boy. But now that he's getting close to 6 yrs old, yet often still seems like a 2 or 3 yr old, I think they are finally starting to see it. His 2 yr old brother is passing him up, and now they can all start to see the difference.

Everytime we have a family get-together, I have to explain why he doesn't want to eat in the same room with 20 noisy other people, why he needs quiet time alone, why he doesn't get their jokes, what he's upset about and why, etc.

I give them books and articles to read. That has helped with some of the relatives who enjoy reading. I tell them what various doctors and therapists have said, so they don't think I'm the only one in the world who thinks he's not "normal".

Mostly they don't "get it" simply because they've never dealt with a child like this before. They are simply naive and uninformed and inexperienced. They literally have no clue. It's up to us to educate them. At one time we had no clue either!

Hugs to you Bari.

Avatar for bari1
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Registered: 03-26-2003
Tue, 05-17-2005 - 7:38am
I agree, but here is the kicker....I am an SLP, I have worked with children on the spectrum since my undergraduate days(looong time ago), as well as some very severely involved children.

Avatar for bari1
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Registered: 03-26-2003
Tue, 05-17-2005 - 7:56am

Renee, I read your letter and your post after mine.

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Registered: 04-11-2003
Tue, 05-17-2005 - 7:58am

LOL, Renee. That is the best way to get others to "get it". Just let them have to really deal with it sometime. You know my dh never really got the jist of dd's problems untill this yr when I started working late hrs and he became the primary caretaker. He suddenly became on board for therapy for her.

Samantha

Samantha

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