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

[Guest guest]

I can relate to this situation. Usually when an environment gets to be too much

for my son, we go outside and take deep breaths or let the meltdown run it's

course and I let my son get back in control, or his dad takes him to the

restroom and he splashes water on his face and calms down, then we try again. If

my son can't regain control we just leave. I don't think it is worth letting him

continue to be upset, and it isn't worth me being upset to stay. Often by the

time we get back from our little 'break' away from where he had his meltdown,

most of the people who were around are gone and it helps prevent me from being a

little embarassed. My husband who is very self confident, just takes the

attitude that we will probably never see these people again, and they've

probably had some uncomfortable public moments too(since no one is perfect.), so

get over it and move on (easier said than done for me).

G.

>

> 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 can relate to this situation. Usually when an environment gets to be too much

for my son, we go outside and take deep breaths or let the meltdown run it's

course and I let my son get back in control, or his dad takes him to the

restroom and he splashes water on his face and calms down, then we try again. If

my son can't regain control we just leave. I don't think it is worth letting him

continue to be upset, and it isn't worth me being upset to stay. Often by the

time we get back from our little 'break' away from where he had his meltdown,

most of the people who were around are gone and it helps prevent me from being a

little embarassed. My husband who is very self confident, just takes the

attitude that we will probably never see these people again, and they've

probably had some uncomfortable public moments too(since no one is perfect.), so

get over it and move on (easier said than done for me).

G.

>

> 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 can relate to this situation. Usually when an environment gets to be too much

for my son, we go outside and take deep breaths or let the meltdown run it's

course and I let my son get back in control, or his dad takes him to the

restroom and he splashes water on his face and calms down, then we try again. If

my son can't regain control we just leave. I don't think it is worth letting him

continue to be upset, and it isn't worth me being upset to stay. Often by the

time we get back from our little 'break' away from where he had his meltdown,

most of the people who were around are gone and it helps prevent me from being a

little embarassed. My husband who is very self confident, just takes the

attitude that we will probably never see these people again, and they've

probably had some uncomfortable public moments too(since no one is perfect.), so

get over it and move on (easier said than done for me).

G.

>

> 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]

You might try one of these two designs from cafepress...http://www.cafepress.com/dd/25695504http://www.cafepress.com/autismrules.430231213

 

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.

-- Lydia Glider-Broward County Special Needs Parents Examinerwww.examiner.com<3  <3  <3  <3  <3  <3  <3

WE CAN DO THIShttp://www.nopom.info<3  <3  <3  <3  <3  <3  <3Hear the REAL Voices of Autism:www.iamautism.org

<3  <3  <3  <3  <3  <3  <3 " First they ignore you, then they ridicule you, then they fight you, then you win. " ~~Mahatma Gandhi

[Guest guest]

You might try one of these two designs from cafepress...http://www.cafepress.com/dd/25695504http://www.cafepress.com/autismrules.430231213

 

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.

-- Lydia Glider-Broward County Special Needs Parents Examinerwww.examiner.com<3  <3  <3  <3  <3  <3  <3

WE CAN DO THIShttp://www.nopom.info<3  <3  <3  <3  <3  <3  <3Hear the REAL Voices of Autism:www.iamautism.org

<3  <3  <3  <3  <3  <3  <3 " First they ignore you, then they ridicule you, then they fight you, then you win. " ~~Mahatma Gandhi

[Guest guest]

You might try one of these two designs from cafepress...http://www.cafepress.com/dd/25695504http://www.cafepress.com/autismrules.430231213

 

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.

-- Lydia Glider-Broward County Special Needs Parents Examinerwww.examiner.com<3  <3  <3  <3  <3  <3  <3

WE CAN DO THIShttp://www.nopom.info<3  <3  <3  <3  <3  <3  <3Hear the REAL Voices of Autism:www.iamautism.org

<3  <3  <3  <3  <3  <3  <3 " First they ignore you, then they ridicule you, then they fight you, then you win. " ~~Mahatma Gandhi

[Guest guest]

e, I'm with you...I'm good with letting my son know that I won't tolerate

a meltdown and I'm past the phase where I thought our kids were the only ones

who scream and cry a river...All kids have meltdowns and for the most part, I

tell him to stop and I walk away. Now, what bugs me the most is when he's making

voices, or flapping... it is embarrassing, I won't lie.

I've been trying to listen to what 2 wonderful ladies have been telling me

lately, that my kid is like anyone else's, all kids have bad days and good days.

If people stare at you while you're talking to him or he's crying, shame on

them, they shouldn't stare. talk about manners...

Focus on what's important, on the message you need to get through to him. So

whenever my kid starts I tell him " that's not how we talk baby " or " what are you

now? A monster? " , and I keep walking, and that normally makes people move on.

My typical daughter also embarrasses me in public, and my friend's typical sons

do it all the time.

I think we make it worse than it is, at times.

You will find nasty people out there but don't let them put you down. Parenting

is not easy, any way you look at it. Hang in there!

Gabi

>

> 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]

e, I'm with you...I'm good with letting my son know that I won't tolerate

a meltdown and I'm past the phase where I thought our kids were the only ones

who scream and cry a river...All kids have meltdowns and for the most part, I

tell him to stop and I walk away. Now, what bugs me the most is when he's making

voices, or flapping... it is embarrassing, I won't lie.

I've been trying to listen to what 2 wonderful ladies have been telling me

lately, that my kid is like anyone else's, all kids have bad days and good days.

If people stare at you while you're talking to him or he's crying, shame on

them, they shouldn't stare. talk about manners...

Focus on what's important, on the message you need to get through to him. So

whenever my kid starts I tell him " that's not how we talk baby " or " what are you

now? A monster? " , and I keep walking, and that normally makes people move on.

My typical daughter also embarrasses me in public, and my friend's typical sons

do it all the time.

I think we make it worse than it is, at times.

You will find nasty people out there but don't let them put you down. Parenting

is not easy, any way you look at it. Hang in there!

Gabi

>

> 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]

e, I'm with you...I'm good with letting my son know that I won't tolerate

a meltdown and I'm past the phase where I thought our kids were the only ones

who scream and cry a river...All kids have meltdowns and for the most part, I

tell him to stop and I walk away. Now, what bugs me the most is when he's making

voices, or flapping... it is embarrassing, I won't lie.

I've been trying to listen to what 2 wonderful ladies have been telling me

lately, that my kid is like anyone else's, all kids have bad days and good days.

If people stare at you while you're talking to him or he's crying, shame on

them, they shouldn't stare. talk about manners...

Focus on what's important, on the message you need to get through to him. So

whenever my kid starts I tell him " that's not how we talk baby " or " what are you

now? A monster? " , and I keep walking, and that normally makes people move on.

My typical daughter also embarrasses me in public, and my friend's typical sons

do it all the time.

I think we make it worse than it is, at times.

You will find nasty people out there but don't let them put you down. Parenting

is not easy, any way you look at it. Hang in there!

Gabi

>

> 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]

You can't take the time to explain it to everyone that gives you that funny

look. And even if you did have the time some of them would still be convinced

that your son was just a brat or that you are a bad parent.

Ignore them and focus on your son's needs in those situations. I flip an

internal switch and just focus on what needs to be done to either deescalate the

situation or move him to a safe place.

Our son has a fascination with bald men. He will go right up to a stranger and

rub his head, and that's at the low end of the enbarrass spectrum. He also has

seizures, now you want to talk about funny looks, well thats another story.

Some people have made up cards to hand out that explain and some have had

t-shirts made that say: " I'm autistic, whats your excuse. "

Steve

>

> 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]

You can't take the time to explain it to everyone that gives you that funny

look. And even if you did have the time some of them would still be convinced

that your son was just a brat or that you are a bad parent.

Ignore them and focus on your son's needs in those situations. I flip an

internal switch and just focus on what needs to be done to either deescalate the

situation or move him to a safe place.

Our son has a fascination with bald men. He will go right up to a stranger and

rub his head, and that's at the low end of the enbarrass spectrum. He also has

seizures, now you want to talk about funny looks, well thats another story.

Some people have made up cards to hand out that explain and some have had

t-shirts made that say: " I'm autistic, whats your excuse. "

Steve

>

> 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 can certainly relate with those moments…have had my share and

still do. I remember once seeing a post where someone mentioned cards

that they had to pass out in moments like this that shared the diagnosis and a brief

explanation. I thought it was a clever idea even though we never used

it. I find my self going in circles with wanting to explain the behaviors

to then feeling guilty that I feel I NEED to explain my child’s behavior

to feeling angry than anyone would pass judgment w/o knowing my full

situation. I think it is something we all struggle with – so maybe

one time the cards will be helpful and yet another, the thought of your

middle finger up at the staring viewer would suffice. J

Cohane, LCSW

creating connections and strengthening families by providing

developmental-behavioral interventions and psychotherapy services

Cohane@...

From: sList [mailto:sList ] On Behalf Of e sen

Sent: Saturday, January 30, 2010

4:26 PM

To: sList

Subject: how to cope

in a world not built for us

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.

No virus found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.432 / Virus Database: 271.1.1/2659 - Release Date: 01/31/10 06:39:00

[Guest guest]

I can certainly relate with those moments…have had my share and

still do. I remember once seeing a post where someone mentioned cards

that they had to pass out in moments like this that shared the diagnosis and a brief

explanation. I thought it was a clever idea even though we never used

it. I find my self going in circles with wanting to explain the behaviors

to then feeling guilty that I feel I NEED to explain my child’s behavior

to feeling angry than anyone would pass judgment w/o knowing my full

situation. I think it is something we all struggle with – so maybe

one time the cards will be helpful and yet another, the thought of your

middle finger up at the staring viewer would suffice. J

Cohane, LCSW

creating connections and strengthening families by providing

developmental-behavioral interventions and psychotherapy services

Cohane@...

From: sList [mailto:sList ] On Behalf Of e sen

Sent: Saturday, January 30, 2010

4:26 PM

To: sList

Subject: how to cope

in a world not built for us

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.

No virus found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.432 / Virus Database: 271.1.1/2659 - Release Date: 01/31/10 06:39:00

[Guest guest]

I can certainly relate with those moments…have had my share and

still do. I remember once seeing a post where someone mentioned cards

that they had to pass out in moments like this that shared the diagnosis and a brief

explanation. I thought it was a clever idea even though we never used

it. I find my self going in circles with wanting to explain the behaviors

to then feeling guilty that I feel I NEED to explain my child’s behavior

to feeling angry than anyone would pass judgment w/o knowing my full

situation. I think it is something we all struggle with – so maybe

one time the cards will be helpful and yet another, the thought of your

middle finger up at the staring viewer would suffice. J

Cohane, LCSW

creating connections and strengthening families by providing

developmental-behavioral interventions and psychotherapy services

Cohane@...

From: sList [mailto:sList ] On Behalf Of e sen

Sent: Saturday, January 30, 2010

4:26 PM

To: sList

Subject: how to cope

in a world not built for us

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.

No virus found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.432 / Virus Database: 271.1.1/2659 - Release Date: 01/31/10 06:39:00

[Guest guest]

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!Subject: RE: how to cope in a world not built for usTo: sList Date: Sunday, January 31, 2010, 8:34 PM

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.

From:

sList@ yahoogroups. com [mailto:sList @yahoogroups. com] On Behalf

Of e sen

Sent: Saturday, January 30, 2010 4:26 PM

To: sList@ yahoogroups. com

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

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]

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!Subject: RE: how to cope in a world not built for usTo: sList Date: Sunday, January 31, 2010, 8:34 PM

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.

From:

sList@ yahoogroups. com [mailto:sList @yahoogroups. com] On Behalf

Of e sen

Sent: Saturday, January 30, 2010 4:26 PM

To: sList@ yahoogroups. com

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

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]

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!Subject: RE: how to cope in a world not built for usTo: sList Date: Sunday, January 31, 2010, 8:34 PM

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.

From:

sList@ yahoogroups. com [mailto:sList @yahoogroups. com] On Behalf

Of e sen

Sent: Saturday, January 30, 2010 4:26 PM

To: sList@ yahoogroups. com

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

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 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 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]

For me, I found that I didn't want my son hearing that he had autism to explain his negative behavior. That is my concern. And, like another listmember said, making him vulnerable to potential predators.

From: Hawk

Sent: Monday, February 01, 2010 12:12 PM

To: sList

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

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.

On Mon, Feb 1, 2010 at 1:13 AM, M T C <cammarata01> wrote:

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]

For me, I found that I didn't want my son hearing that he had autism to explain his negative behavior. That is my concern. And, like another listmember said, making him vulnerable to potential predators.

From: Hawk

Sent: Monday, February 01, 2010 12:12 PM

To: sList

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

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.

On Mon, Feb 1, 2010 at 1:13 AM, M T C <cammarata01> wrote:

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]

For me, I found that I didn't want my son hearing that he had autism to explain his negative behavior. That is my concern. And, like another listmember said, making him vulnerable to potential predators.

From: Hawk

Sent: Monday, February 01, 2010 12:12 PM

To: sList

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

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.

On Mon, Feb 1, 2010 at 1:13 AM, M T C <cammarata01> wrote:

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'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.Sent from my Verizon Wireless BlackBerryDate: Mon, 1 Feb 2010 12:12:45 -0500To: <sList >Subject: Re: how to cope in a world not built for us 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. On Mon, Feb 1, 2010 at 1:13 AM, M T C <cammarata01> wrote: 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