Re: how to cope in a world not built for us

[Guest guest]

I agree with this suggestion. Any time my son and I are traveling he wears some kind of autism awareness shirt. We also have bumper stickers on the car as many of our meltdowns are in the parking lot. It makes it so much easier in the middle of a meltdown. Also since my son has a service dog, it is easily noticeable that he has a disability and autism. Most of the time, we no longer get snide remarks, but offers for assistance.

 

Hi e,

 

I can remember a parent saying that she was tired of explaining

that her son had autism. My suggestion is every time you take your son out in

public wear an autism t-shirt. If they can do simple addition they will make

the connection between your son and the t-shirt.

Then if they approach you and have questions they already know the problem. I

think this might also eliminate the need to explain things. It will

automatically tell them a little bit about the problem.

 

In fact I would encourage any parent who takes their child out

into the public to wear an autism t-shirt. In this way you really don't have to

try and explain why your son is acting that way. Then if you get questions it

will be about your son and autism. If they don't ask questions they will still

know why the atypical behavior.

 

 -- AutismOnTheGo.com

[Guest guest]

I agree with this suggestion. Any time my son and I are traveling he wears some kind of autism awareness shirt. We also have bumper stickers on the car as many of our meltdowns are in the parking lot. It makes it so much easier in the middle of a meltdown. Also since my son has a service dog, it is easily noticeable that he has a disability and autism. Most of the time, we no longer get snide remarks, but offers for assistance.

 

Hi e,

 

I can remember a parent saying that she was tired of explaining

that her son had autism. My suggestion is every time you take your son out in

public wear an autism t-shirt. If they can do simple addition they will make

the connection between your son and the t-shirt.

Then if they approach you and have questions they already know the problem. I

think this might also eliminate the need to explain things. It will

automatically tell them a little bit about the problem.

 

In fact I would encourage any parent who takes their child out

into the public to wear an autism t-shirt. In this way you really don't have to

try and explain why your son is acting that way. Then if you get questions it

will be about your son and autism. If they don't ask questions they will still

know why the atypical behavior.

 

 -- AutismOnTheGo.com

[Guest guest]

I can understand people looking at us in strange ways when those things happen.

Before our son I and dare I say most of us probably would have glanced at the

situation and commented to the person we were with " can you believe that " .

I am one of those people who in most instances can just not care what other

people are thinking. If you can't then it probably would make you feel better

just to apologize for the disturbance and briefly explain that your child has

autism and can't help himself sometimes. I am certain that most people would

then see the situation in a different light making you feel better too.

>

> I just experienced yet another embarrassing public moment with my son, and its

moments like these that drive home the reality that this world is not always

built for us. Not every place or situation is accommodating for our kids, and

like many of you I wish that more people understood what it is like for children

with autism. I refuse to keep my son locked in the house, I want him to

experience things and enjoy activities just like other children. I know our

limitations, and try to avoid events that I know ahead of time are not going to

work well for us. But I still want to continue to try new things from time to

time to provide exposure and give my son a chance. My son is 6, and he has a

severe delay in speech & cognition. (Its much like having a 2 yr old trapped in

a 6 yr old's body.) So when he doesn't understand or is trying to cope with

sensory issues, to a stranger viewing us at a glance it may seem as though he is

just a very defiant child, or

> that I am a bad parent. Do you have any advice for dealing with situations

where we end up becoming a spectacle b/c of a meltdown or sensitivity to over

stimulation? Its easy to say " you shouldn't care about what other people think "

But I still feel embarrassed and sad when we have those moments. As much as I

celebrate my son's successes and enjoy seeing him achieve a milestone or goal,

it is as equally depressing for me when I am hit with the cold reality that we

still can not do some typical activities. I love my son very much, and am

extremely proud of him. I would never wish he were someone else, but I do wish

the world would be more understanding, compassionate and less judgmental.

>

[Guest guest]

I would rather advertise that my son has autism, than deal with the police being called and reports to DCF. When a child is no longer a little child, no longer cute and their behavior way out of proportion for their age, you must do something to keep them safe. I have less fear of a predator as my son is with me 24/7 than I do of the police being called and responding to my son inappropriately.

 

Some parents have mentioned that advertising that their child has autism in public may make their child more vulnerable to predators. Something to think about I guess- as if we don't have enough!

-- AutismOnTheGo.com

[Guest guest]

I would rather advertise that my son has autism, than deal with the police being called and reports to DCF. When a child is no longer a little child, no longer cute and their behavior way out of proportion for their age, you must do something to keep them safe. I have less fear of a predator as my son is with me 24/7 than I do of the police being called and responding to my son inappropriately.

 

Some parents have mentioned that advertising that their child has autism in public may make their child more vulnerable to predators. Something to think about I guess- as if we don't have enough!

-- AutismOnTheGo.com

[Guest guest]

One great thing about America is we're all entitled to our opinion. We can use just about anything to spread awareness.. generally when I give out a pamphlet on A.S.D. it's not during a 'meltdown' it's when someone stares rudely at why ' ny ' is playing oddly with something, not talking 'right' in their sense anyway, or something such as that. I think that ignoring ignorance is a smart thing to do when it's bothering you to a point of not being able to concentrate on what you're doing that's important. When someone looks at one of my 'kids' that I'm directly working with now on a daily basis... as they inappropriately do something that the 'staring party' thinks they shouldn't do.. or thinks that we're bad parents

etc... handing them a pamphlet with a smile and saying " have a nice day ' ... is worth the time it takes. Now if the child is melting down.. it's time to remove them from the situation and I agree to not give them a second thought 'at that time'.. If I knew who it was.. they would still get the smile, pamphlet, and 'have a nice day' . No reason to be rude is there ?' E. , Sr. Nationwide Spec. Ed. Advocate/AdviserThe Office of Special Education Advocacy, Inc. " O.S.E.A. " Founder, The Office of Advocacy for Autistic Children, est.1996NOTE: OFFICE has MOVED TO CALIF...Hm/office #(530)605-3548You can also reach my Sr. Advocate and Business Manager at the Home Office # aboveCELL # *best way to reach me is by cell**BAN Illegal Restraint, Seclusion, and Arrest of Dev. Disabled** JOIN US AT: http://groups.yahoo.com/group/EveryoneUnited4DisabilityReform/ http://groups.yahoo.com/group/ParentsUnitedforSpecialEd/This electronic mail message and any attached files contain information intended for the exclusive use of the individual or entity to whom it is addressed and may contain information that is proprietary, privileged, confidential, and/or exempt from disclosure under the Electronic Communications Privacy Act, (18 U.S.C. §§ 2510-2521.)To:

sList Sent: Mon, February 1, 2010 1:48:59 PMSubject: Re: how to cope in a world not built for us

It's people like the person described below that made me give up trying to explain autism to a stranger while I try and deal with a meltdown. People like will never "get it."

The appropriate way to deal with negative behavior, whether it be fron an NT adult or an autistic child is the same:

Ignore it.

Anything else just reinforces negative behavior.

Steve

>

> I'm a nanny to a child on the spectrum. One day we were at a store and the fire alarm went off for a couple of seconds. "My" little boy had a melt. There were people watching but there was this one lady who grab my arm and told me "control your son, if you can't control him out in public we should stay home". I tried to explain to her that he autism and she told me that wasn't an excuse at all. And that instead of coming up with excuse I should take a look at "my" parents skills. All I wanted to do was hit her. After that I don't bother explaining.

>

> When he is having a melt down, hugging works. Or tickle him. Or have him behind me or under a sweater. Or leaving.

[Guest guest]

You made me think of something , thank you . Now the ultimate way of showing them awareness would be to just extend my left forearm... the inside has a 3" x 4" tattoo of the ' Puzzle ' logo.... along with " Autism ' in script below... I guess that could be a 'silent' way of showing them... although the other arm with the 14" very detailed tatt of the last Nascar S.W. tour car I drove before I ended my career racing with a 'bang' somewhat takes away from that. Now I could always go around with a long sleeve shirt.. one sleeve up.. one sleeve down... Peace to all... E. , Sr. Nationwide Spec. Ed. Advocate/AdviserThe Office of Special Education Advocacy, Inc. " O.S.E.A. " Founder, The Office of Advocacy for Autistic Children, est.1996NOTE: OFFICE has MOVED TO CALIF...Hm/office #(530)605-3548You can also reach my Sr. Advocate and Business Manager at the Home Office # aboveCELL # *best way to reach

me is by cell**BAN Illegal Restraint, Seclusion, and Arrest of Dev. Disabled** JOIN US AT: http://groups.yahoo.com/group/EveryoneUnited4DisabilityReform/ http://groups.yahoo.com/group/ParentsUnitedforSpecialEd/This electronic mail message and any attached files contain information intended for the exclusive use of the individual or entity to whom it is addressed and may contain information that is proprietary, privileged, confidential, and/or exempt from disclosure under the Electronic Communications Privacy Act, (18 U.S.C. §§ 2510-2521.)To: sList Sent: Mon, February 1, 2010 3:21:26 AMSubject: Re: how to cope in a world not built for us

I agree with this suggestion. Any time my son and I are traveling he wears some kind of autism awareness shirt. We also have bumper stickers on the car as many of our meltdowns are in the parking lot. It makes it so much easier in the middle of a meltdown. Also since my son has a service dog, it is easily noticeable that he has a disability and autism. Most of the time, we no longer get snide remarks, but offers for assistance.

On Sun, Jan 31, 2010 at 8:34 PM, Heifferon <gary00001msn (DOT) com> wrote:

Hi e,

I can remember a parent saying that she was tired of explaining

that her son had autism. My suggestion is every time you take your son out in

public wear an autism t-shirt. If they can do simple addition they will make

the connection between your son and the t-shirt.

Then if they approach you and have questions they already know the problem. I

think this might also eliminate the need to explain things. It will

automatically tell them a little bit about the problem.

In fact I would encourage any parent who takes their child out

into the public to wear an autism t-shirt. In this way you really don't have to

try and explain why your son is acting that way. Then if you get questions it

will be about your son and autism. If they don't ask questions they will still

know why the atypical behavior.

-- AutismOnTheGo. com

[Guest guest]

I agree with you Carly.

From: sList [mailto:sList ] On Behalf Of Carly Sax

Sent: Monday, February 01, 2010

8:41 PM

To: sList

Subject: Re: how to

cope in a world not built for us

From: Carly Sax <carlysaxme>

Date: February 1, 2010 8:33:58 PM EST

To: sList

Subject: Re: how to cope in a world not built for us

I don't believe in God, but I believe they are here to teach.

On Feb 1, 2010, at 3:00 PM, avrvp wrote:

All I have learned or better yet, been conditioned

to do, by people who are not blessed with our type of children, is to #1, pray

for those people who don't know any better #2 tell them that my child is a

special needs child.

I had an incident once @ a boutique in the mall. I was @ the register waiting

in line to pay. My son, who has CP accidentally bumped into a lady. Almost

instantly, she snapped @ my son said... " You'd better be more careful

say sorry! " ...I felt the blood in my body burn up into my head said to the

woman that he had CP he has issues with his balance. It was as if though I had

poured a gallon of cold water on her head because after she paid walked outside

the store, she waited for us apologized profusely said she believed in God

actually told my son she loved him...Go figure!!!

I think that day was a day she will never forget nor will she ever, hopefully,

jump to judgement as quickly again.

God has blessed us all with these pure souls I think they teach us so much more

than we can ever teach them.

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