Anyone experience this when telling?
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| Sun, 07-08-2007 - 11:53pm |
At church today (church is always so trying). I was one of the volunteers to watch the kids. During summer there is no Sunday school the kids are in the playground and there are crafts until we enter the church before communion.
So I mention to the head of the children's ministry that Liam is on the Autism Spectrum. i was trying to explain some of the unusual behaviors he was displaying at the time. Plus, later he was holding her ds hand as we walk towards the church just kissing the boys hand over and over (lol). Her ds was saying "EWWWWW"
Anyway when I first said it she listened but went on like I had said nothing. Others have responded this way too. I don't get it. I immediately felt isolated. i was so wishing one of the moms from here attended my church.
Is this:
1) They didn't hear me?
2) They didn't understand what I said?
3) They think I am nuts?
4) They don't know what to say?
It's no secret I have been having a difficult time lately. With summer I am seeing more autistic behaviors and the dx just stabs me a little deeper. I don't want to sound pityful but I'm not in the place I want to be just now. Any thoughts? Do you have people who have reacted like this?
Molly

Yes, yes and yes (to your question in the title anyways).
I had a similar experience with my younger guy Nic with Tourettes. I was trying to explain to his day camp director some of Nic's tics, and I would like it if he told the counselors. Nic has resisted going for a bit, because he's afraid he will get in trouble for certain tic's he has.
So finally I was talking to his "Favorite" counselor lol (she's real pretty and he wants to marry her lol) and I was surprised to see he never told anyone. WTH? He was kinda like how you describe your experience recently. I felt like it was going in one ear and out the other.....
So after I told her I asked her if she would spread the word. I think I might even make sure everyone knows.
Its really frustraiting at times isn't it?
Lainie
Carey
Exactly why I don't tell many people. They just don't have a clue. It took me long enough to explain to my father about AS. He would forever ask me if I wasn't sure that Haley's behavioral issues were just about trying to get attention. Now he finally understands.
Haley told one of her friends that she has Asperger's and the whole family acts like it is some kind of contagious disease or something. Makes me so angry!!
I wish there was some easy way to educate the entire world in one single effort. :(
-- Jill
Mom to Erin (19) and Haley (10yo Asp
Molly,
I have experienced that reaction along with a myriad of others both positive and negative. I think you were very observant in the reasons for her reaction other than not hearing you. I would bet she did hear. There is one other option that unfortunately is all too common in our area, shallowness. I have met a plethora of parents that are more worried about their vacations, the activities their perfect children are involved in and their perfect house/car/yard to even come close to comprehending what you were trying to say.
I think you did the right thing regardless. It isn't always easy being the agents of change. If we want understanding for our kids and for our kids to be able to be included in society that means society needs to have an understanding for our kids. That happens one person at a time. Even if they don't seem to listen they did hear and what you said will have an impact even if it takes a while and lots of such conversations from various people for them to really get it.
Give me a call later when you are up and moving. Mike took today off and maybe we can do the park after Liam is off school. If you don't want to do the park you guys can come over for a playdate or something. I have nothing until 6:30.
Renee
i,ve experienced this quite alot lately,especially by his teaching aid at school.
i picked him up about 6 weeks ago,teacher said he's been acting silly and giddy all morning.was asked is he exited about something he's doing at the weekend,i said no,don't YOU know why?it was non school uniform day and the change of clothes was what had made him giddy,along with half of his class too,but that wasn't mentioned.
why couldn't an sna work that out?
they always make you feel like a bad parent,don't they?
he also had a target board in class,they'd move up for good bh,move down for bad.
good idea i thought until i found out they'd get moved down if they needed the loo during class time.ahhhh,how can you punish a child for needing the loo?i asked the teacher if he could be taken off the board because it was causing alot of problems for ds.i was told no because that would make him different to all his class.hold on a minute,he is,he has pdd/nos,do the rest of the class?if its causing soooooo many problems get a target board of his own that he can understand and follow?
a lot of people in our family don't know due to the same reason,think its all your fault.
yvonne xxx
Molly,
I have snappy comebacks for almost every occasion, but I have never figured out a
visit my blog at www.onesickmother.com
dang writers. Keep saying everything I say better.
(ROFL, j/k Dahlink! It was better but it is ok)
Renee
I have experienced this too. Some people just look at me like I'm talking a foreign language when I mention Lily's pdd-nos dx. Then again, up until Lily I didn't know much about autism either. I didn't know about the autism spectrum. I knew about classic autism, but that was about it. Oh and of course, I knew about "Rainman", but that's about as far as my knowledge went. I think that as time goes by there will be more and more people who know what an ASD is. I can't remember who said it, but I know someone on the board mentioned something about how over time, with enough exposure to explanations of ASD, that eventually those who are ignorant about it will finally have that light bulb go off in their head. I totally agree with that. I think there are also people who are afraid to talk about autism because it's something they are afraid to even think about. The people that bother me most though are the doctors who have no idea about the autism spectrum. I mean I know they can't know everything about everything, but they could at least try to learn the basics. For example, I really like Lily's geneticist and he is obviously a very intelligent man, but he absolutely refuses to believe that Lily has a form of autism. I think he knows nothing about the spectrum and thinks that only classic autism qualifies. He keeps saying how intelligent Lily is and that she just can't have autism. Since he's an adult, she gets along great with him. I've tried to explain the spectrum to him and about how she loves adults, but could care less about playing with other kids, but he just gives me a blank stare. I've decided that there's no point in wasting my breath. As far as his medical treatment of Lily, there is really not much need at this point for him to understand the pdd-nos dx. He is supposed to focus on her genetic syndrome, so I think for now I will just let the autism issue with him go. Anyways, that's my two cents.
Amy~Natalie & Lily's mom