Re: Dealing with relatives over the holidays

[Guest guest]

It's time to post my " Holidays " essay and time to confess--I recently had a

" melt down " at my MIL's 80th B-day party.

One of Mom's 80 year old best friends asked me if I had a DIAPER BAG for my 30

year old. We have a red backpack with autism awareness embroidery on it, which

carries extra clothes, dark glasses (when Russ needs to retreat), games and few

things to distract him when he needs something to do in a social environment he

isn't interested in. I brought the bag (and we call it the " autism bag " )in to

the restaurant because I knew he wouldn't care about anything other than the

food and we might need some of it. This lady hadn't see Russ since he was a

little kid but I was shocked at her bluntness and literally ran sobbing from the

room. One of my BILs followed me and was comforting to a point but, geez, it

does get to me every once in a while! Especially since most family members

finally *get* .

It's still hard and hard to know what to say. We may never see this person

again and I just am tired of having to educated the whole dang world all the

time!

Marie

>

> Surviving the holidays: Tips for getting relatives to interact with your child

and dealing with insensitive comments by family members.

> http://bit.ly/bV5frR

>

[Guest guest]

You are not alone.  We have all felt this way at one point or another.  Hang

in there.  Autism has come along way because you have educated so many people

in the last 30 years.  It just took you by surprise because so many other

people you where with know what Russel needs to be included in family events and

don't think anything out it. 

Maybe Russel should carry it and call it his MAN bag. lol.

Have fun during the holidays.

Maureen

From: teteme55 <teteme@...>

Subject: Re: Dealing with relatives over the holidays

IPADDUnite

Date: Sunday, November 14, 2010, 2:49 PM

 

It's time to post my " Holidays " essay and time to confess--I recently had

a " melt down " at my MIL's 80th B-day party.

One of Mom's 80 year old best friends asked me if I had a DIAPER BAG for my 30

year old. We have a red backpack with autism awareness embroidery on it, which

carries extra clothes, dark glasses (when Russ needs to retreat), games and few

things to distract him when he needs something to do in a social environment he

isn't interested in. I brought the bag (and we call it the " autism bag " )in to

the restaurant because I knew he wouldn't care about anything other than the

food and we might need some of it. This lady hadn't see Russ since he was a

little kid but I was shocked at her bluntness and literally ran sobbing from the

room. One of my BILs followed me and was comforting to a point but, geez, it

does get to me every once in a while! Especially since most family members

finally *get* .

It's still hard and hard to know what to say. We may never see this person

again and I just am tired of having to educated the whole dang world all the

time!

Marie

>

> Surviving the holidays: Tips for getting relatives to interact with your child

and dealing with insensitive comments by family members.

> http://bit.ly/bV5frR

>

[Guest guest]

Great topic to bring up!! This is an area that can be so stressful for so many.

In addition to all the info shared at the link- I wanted to share the following

" letter to friends and relatives over the Holidays " which was written first hand

from the perspective of a person with autism, but can easily be adopted to be

written by a parent who has a child with any condition (perhaps some of you can

share how you tweaked it so we have it for the archives?). There are however

many more suggestions and discussions on this in the archives but you'd have to

dig for them. Again this is something that comes up yearly, and again a great

and much needed topic:

This could easily be adapted for apraxia, sensory integration, etc.

A Note About the Holidays - From the Autism Perspective

The holidays can be wonderful, but they are also stressful in unique ways.

The following " letter to family " has been circulated widely and shares the

possible perspective of the holidays by a person on the spectrum. We are

resending the info at this time. Feel free to share with your chapter

members, friends, and family.

This was written for the purpose of it being sent to relatives, friends, and

hosts of holiday gatherings that might need a crash course in what to expect

from their guest on the autism spectrum. This letter is written as if the

individual on the autism spectrum is writing it personally.

Dear Family and Friends:

I understand that we will be visiting each other for the holidays this year!

Sometimes these visits can be very hard for me, but here is some information

that might help our visit to be more successful. As you probably know, a

hidden disability called autism, or what some people refer to as a Pervasive

Developmental Disorder (PDD), challenges me. Autism/PDD is a

neurodevelopment disorder, which makes it hard for me to understand the

environment around me. I have barriers in my brain that you can't see, but

which make it difficult for me to adapt to my surroundings.

Thanksgiving & Christmas is one of the roughest holidays for me. With large

crowds and holiday shopping it can be very overwhelming, even a bit scary.

When planning a party remember that with my over sensitive hearing and eye

sight, Christmas trees and holiday smells can cause me mild to severe pain

or discomfort. If the noises are impossible to control a personal stereo

with headphones set to a safe level for children may help drown out

background noise and ease my discomfort.

Sometimes I may seem rude and abrupt, but it is only that because I have to

try so hard to understand people and at the same time, make myself

understood. People with autism have different abilities: some may not speak,

some write beautiful poetry, others are whizzes in math (Albert Einstein was

thought to be autistic), or may have difficulty making friends. We are all

different and need various degrees of support.

Sometimes when I am touched unexpectedly, it might feel painful and make me

want to run away. I get easily frustrated too. Being with lots of other

people is like standing next to a moving freight train and trying to decide

how and when to jump aboard. I feel frightened and confused a lot of the

time. This is why I need to have things the same as much as possible. Once I

learn how things happen, I can get by OK. But if something, anything,

changes, then I have to relearn the situation all over again! It is very

hard.

When you try to talk to me, I often can't understand what you say because

there is a lot of distraction around. I have to concentrate very hard to

hear and understand one thing at a time. You might think I am ignoring you-I

am not. Rather, I am hearing everything and not knowing what is most

important to respond to.

Holidays are exceptionally hard because there are so many different people,

places, and things going on that are out of my ordinary realm. This may be

fun and adventurous for most people, but for me, it's very hard work and can

be extremely stressful. I often have to get away from all the commotion to

calm down. It would be great if you had a private place set up to where I

could retreat.

If I cannot sit at the meal table, do not think I am misbehaving or that my

parents have no control over me. Sitting in one place for even five minutes

is often impossible for me. I feel so antsy and overwhelmed by all the

smells, sounds, and people--I just have to get up and move about. Please

don't hold up your meal for me--go on without me, and my parents will handle

the situation the best way they know how.

Eating in general is hard for me. If you understand that autism is a sensory

processing disorder, it's no wonder eating is a problem! Think of all the

senses involved with eating. Sight, smell, taste, touch, AND all the

complicated mechanics that are involved. Chewing and swallowing is something

that a lot of people with autism have trouble with. I am not being picky-I

literally cannot eat certain foods as my sensory system and/or oral motor

coordination is impaired. Don't be disappointed if Mom hasn't dressed me in

starch and bows. It's because she knows how much stiff and frilly clothes

can drive me buggy! I have to feel comfortable in my clothes or I will just

be miserable. When I go to someone else's house, I may appear bossy and

controlling. In a sense, I am being controlling, because that is how I try

to fit into the world around me (which is so hard to figure out!) Things

have to be done in a way I am familiar with or else I might get confused and

frustrated. It doesn't mean you have to change the way you are doing

things—just please be patient with me, and understanding of how I have to

cope. Mom and Dad have no control over how my autism makes me feel inside.

People with autism often have little things that they do to help themselves

feel more comfortable. The grown ups call it " self regulation, " or

" stimming'. I might rock, hum, flick my fingers, or any number of different

things. I am not trying to be disruptive or weird. Again, I am doing what I

have to do for my brain to adapt to your world. Sometimes I cannot stop

myself from talking, singing, or doing an activity I enjoy. The grown-ups

call this " perseverating " which is kind-a-like self-regulation or stimming.

I do this only because I have found something to occupy myself that makes me

feel comfortable. Perseverative behaviors are good to a certain degree

because they help me calm down.

Please be respectful to my Mom and Dad if they let me " stim " for a while as

they know me best and what helps to calm me. Remember that my Mom and Dad

have to watch me much more closely than the average child. This is for my

own safety, and preservation of your possessions. It hurts my parents'

feelings to be criticized for being over protective, or condemned for not

watching me close enough. They are human and have been given an assignment

intended for saints. My parents are good people and need your support.

Holidays are filled with sights, sounds, and smells. The average household

is turned into a busy, frantic, festive place. Remember that this may be fun

for you, but it's very hard work for me to conform. If I fall apart or act

out in a way that you consider socially inappropriate, please remember that

I don't possess the neurological system that is required to follow some

social rules. I am a unique person—an interesting person. I will find my

place at this celebration that is comfortable for us all, as long as you'll

try to view the world through my eyes!

*Author, Viki Gayhardt

=====

[Guest guest]

I hope someone (anyone) can help me with this issue:

My son has issues with germs. It has grown progressively worse lately:

He will not touch a grocery cart, door knob, hand rail for an escalator, or

button for an elevator.

He will not lean back in a chair. When I put a towel on the chair, I have to

reassure him that the towel just came out of the dryer.  He will get up from

dinner and wash the fork, knife and spoon - even at a relative's home.

Any ideas??????

Thank you in advance.

-Sherri

________________________________

From: Maureen Hartnett <maureen-hartnett@...>

IPADDUnite

Sent: Sun, November 14, 2010 3:06:10 PM

Subject: Re: Re: Dealing with relatives over the holidays

 

You are not alone.  We have all felt this way at one point or another.  Hang

in

there.  Autism has come along way because you have educated so many people in

the last 30 years.  It just took you by surprise because so many other people

you where with know what Russel needs to be included in family events and don't

think anything out it. 

Maybe Russel should carry it and call it his MAN bag. lol.

Have fun during the holidays.

Maureen

From: teteme55 <teteme@...>

Subject: Re: Dealing with relatives over the holidays

IPADDUnite

Date: Sunday, November 14, 2010, 2:49 PM

 

It's time to post my " Holidays " essay and time to confess--I recently had a

" melt down " at my MIL's 80th B-day party.

One of Mom's 80 year old best friends asked me if I had a DIAPER BAG for my 30

year old. We have a red backpack with autism awareness embroidery on it, which

carries extra clothes, dark glasses (when Russ needs to retreat), games and few

things to distract him when he needs something to do in a social environment he

isn't interested in. I brought the bag (and we call it the " autism bag " )in to

the restaurant because I knew he wouldn't care about anything other than the

food and we might need some of it. This lady hadn't see Russ since he was a

little kid but I was shocked at her bluntness and literally ran sobbing from the

room. One of my BILs followed me and was comforting to a point but, geez, it

does get to me every once in a while! Especially since most family members

finally *get* .

It's still hard and hard to know what to say. We may never see this person again

and I just am tired of having to educated the whole dang world all the time!

Marie

>

> Surviving the holidays: Tips for getting relatives to interact with your child

>and dealing with insensitive comments by family members.

> http://bit.ly/bV5frR

>

[Guest guest]

You are dealing with contamination OCD. It responds well to medication or

cognitive behavioral therapy.

Good luck finding a competent therapist.

Jean

On Sun, Nov 14, 2010 at 9:05 PM, Sherri Schneider

<benefithelpss@...>wrote:

>

>

> I hope someone (anyone) can help me with this issue:

> My son has issues with germs. It has grown progressively worse lately:

> He will not touch a grocery cart, door knob, hand rail for an escalator, or

>

> button for an elevator.

>

> He will not lean back in a chair. When I put a towel on the chair, I have

> to

> reassure him that the towel just came out of the dryer. He will get up

> from

> dinner and wash the fork, knife and spoon - even at a relative's home.

>

> Any ideas??????

> Thank you in advance.

> -Sherri

>

> ________________________________

> From: Maureen Hartnett

<maureen-hartnett@...<maureen-hartnett%40sbcglobal.net>

> >

> IPADDUnite <IPADDUnite%40>

> Sent: Sun, November 14, 2010 3:06:10 PM

> Subject: Re: Re: Dealing with relatives over the holidays

>

>

>

> You are not alone. We have all felt this way at one point or another.

> Hang in

> there. Autism has come along way because you have educated so many people

> in

> the last 30 years. It just took you by surprise because so many other

> people

> you where with know what Russel needs to be included in family events and

> don't

> think anything out it.

>

> Maybe Russel should carry it and call it his MAN bag. lol.

> Have fun during the holidays.

> Maureen

>

>

>

> From: teteme55 <teteme@... <teteme%40ameritech.net>>

> Subject: Re: Dealing with relatives over the holidays

> IPADDUnite <IPADDUnite%40>

> Date: Sunday, November 14, 2010, 2:49 PM

>

>

>

> It's time to post my " Holidays " essay and time to confess--I recently had a

>

> " melt down " at my MIL's 80th B-day party.

>

> One of Mom's 80 year old best friends asked me if I had a DIAPER BAG for my

> 30

> year old. We have a red backpack with autism awareness embroidery on it,

> which

> carries extra clothes, dark glasses (when Russ needs to retreat), games and

> few

> things to distract him when he needs something to do in a social

> environment he

> isn't interested in. I brought the bag (and we call it the " autism bag " )in

> to

> the restaurant because I knew he wouldn't care about anything other than

> the

> food and we might need some of it. This lady hadn't see Russ since he was a

>

> little kid but I was shocked at her bluntness and literally ran sobbing

> from the

> room. One of my BILs followed me and was comforting to a point but, geez,

> it

> does get to me every once in a while! Especially since most family members

> finally *get* .

>

> It's still hard and hard to know what to say. We may never see this person

> again

> and I just am tired of having to educated the whole dang world all the

> time!

>

> Marie

>

>

>

> >

>

> > Surviving the holidays: Tips for getting relatives to interact with your

> child

> >and dealing with insensitive comments by family members.

>

> > http://bit.ly/bV5frR

>

> >

>

>

[Guest guest]

How about carrying a small container of disinfecting wipes and letting him clean

the grocery cart with them? Or you can carry a pair of disposable gloves and

have him wear one on the hand that does the bulk of the touching?

My daughter doesn't like to get her hands dirty, so when she goes to the

washroom, she uses disposable gloves to clean herself. When she helps me with

Christmas cookies, she wears gloves also

In public washrooms, I use a paper towel to touch the faucets and doors.

I don't have any ideas about the other things. Maybe if he can carry a special

towel in a backpack (sealed in a zip lock bag) and this can be his 'safe towel'.

>

> >

>

> > Surviving the holidays: Tips for getting relatives to interact with your

child

> >and dealing with insensitive comments by family members.

>

> > http://bit.ly/bV5frR

>

> >

>

>

[Guest guest]

Especially a therapist that accepts IL Medicaid.

Thank you for your input.

-Sherri

________________________________

From: Kulczyk <advocate4kids@...>

IPADDUnite

Sent: Sun, November 14, 2010 9:10:56 PM

Subject: Re: Re: Dealing with relatives over the holidays

You are dealing with contamination OCD.  It responds well to medication or

cognitive behavioral therapy.

Good luck finding a competent therapist.

Jean

On Sun, Nov 14, 2010 at 9:05 PM, Sherri Schneider

<benefithelpss@...>wrote:

>

>

> I hope someone (anyone) can help me with this issue:

> My son has issues with germs. It has grown progressively worse lately:

> He will not touch a grocery cart, door knob, hand rail for an escalator, or

>

> button for an elevator.

>

> He will not lean back in a chair. When I put a towel on the chair, I have

> to

> reassure him that the towel just came out of the dryer.  He will get up

> from

> dinner and wash the fork, knife and spoon - even at a relative's home.

>

> Any ideas??????

> Thank you in advance.

> -Sherri

>

> ________________________________

> From: Maureen Hartnett

><maureen-hartnett@...<maureen-hartnett%40sbcglobal.net>

> >

> IPADDUnite <IPADDUnite%40>

> Sent: Sun, November 14, 2010 3:06:10 PM

> Subject: Re: Re: Dealing with relatives over the holidays

>

>

>

> You are not alone.  We have all felt this way at one point or another.

> Hang in

> there.  Autism has come along way because you have educated so many people

> in

> the last 30 years.  It just took you by surprise because so many other

> people

> you where with know what Russel needs to be included in family events and

> don't

> think anything out it.

>

> Maybe Russel should carry it and call it his MAN bag. lol.

> Have fun during the holidays.

> Maureen

>

>

>

> From: teteme55 <teteme@... <teteme%40ameritech.net>>

> Subject: Re: Dealing with relatives over the holidays

> IPADDUnite <IPADDUnite%40>

> Date: Sunday, November 14, 2010, 2:49 PM

>

>

>

> It's time to post my " Holidays " essay and time to confess--I recently had a

>

> " melt down " at my MIL's 80th B-day party.

>

> One of Mom's 80 year old best friends asked me if I had a DIAPER BAG for my

> 30

> year old. We have a red backpack with autism awareness embroidery on it,

> which

> carries extra clothes, dark glasses (when Russ needs to retreat), games and

> few

> things to distract him when he needs something to do in a social

> environment he

> isn't interested in. I brought the bag (and we call it the " autism bag " )in

> to

> the restaurant because I knew he wouldn't care about anything other than

> the

> food and we might need some of it. This lady hadn't see Russ since he was a

>

> little kid but I was shocked at her bluntness and literally ran sobbing

> from the

> room. One of my BILs followed me and was comforting to a point but, geez,

> it

> does get to me every once in a while! Especially since most family members

> finally *get* .

>

> It's still hard and hard to know what to say. We may never see this person

> again

> and I just am tired of having to educated the whole dang world all the

> time!

>

> Marie

>

>

>

> >

>

> > Surviving the holidays: Tips for getting relatives to interact with your

> child

> >and dealing with insensitive comments by family members.

>

> > http://bit.ly/bV5frR

>

> >

>

>

[Guest guest]

I will definitely try these. I will have to hand him the wipe - he won't touch

the container.

Thank you for the suggestions.

-Sherri

________________________________

From: cmfinato <cmfinato@...>

IPADDUnite

Sent: Sun, November 14, 2010 10:37:52 PM

Subject: Re: Dealing with relatives over the holidays

 

How about carrying a small container of disinfecting wipes and letting him clean

the grocery cart with them? Or you can carry a pair of disposable gloves and

have him wear one on the hand that does the bulk of the touching?

My daughter doesn't like to get her hands dirty, so when she goes to the

washroom, she uses disposable gloves to clean herself. When she helps me with

Christmas cookies, she wears gloves also

In public washrooms, I use a paper towel to touch the faucets and doors.

I don't have any ideas about the other things. Maybe if he can carry a special

towel in a backpack (sealed in a zip lock bag) and this can be his 'safe towel'.

>

> >

>

> > Surviving the holidays: Tips for getting relatives to interact with your

>child

>

> >and dealing with insensitive comments by family members.

>

> > http://bit.ly/bV5frR

>

> >

>

>

[Guest guest]

Hi,

My son has some OCD issues along with his autism.  He had some individual

sessions with a therapist from the Center for the Treatment of Anxiety and

Agoraphobia (maybe not quite the exact name) on the North Shore that were very

helpful. The therapist used a cognitive-behavioral approach practicing some

things with Jonathon and then behavioral " homework " to do between sessions.

The germ issue sounds obsessive-compulsive ?? -- so maybe the above could help.

Best wishes,

Bonnie Dohogne

From: Sherri Schneider <benefithelpss@...>

Subject: Re: Re: Dealing with relatives over the holidays

IPADDUnite

Date: Monday, November 15, 2010, 9:09 AM

 

I will definitely try these. I will have to hand him the wipe - he won't

touch

the container.

Thank you for the suggestions.

-Sherri

________________________________

From: cmfinato <cmfinato@...>

IPADDUnite

Sent: Sun, November 14, 2010 10:37:52 PM

Subject: Re: Dealing with relatives over the holidays

 

How about carrying a small container of disinfecting wipes and letting him clean

the grocery cart with them? Or you can carry a pair of disposable gloves and

have him wear one on the hand that does the bulk of the touching?

My daughter doesn't like to get her hands dirty, so when she goes to the

washroom, she uses disposable gloves to clean herself. When she helps me with

Christmas cookies, she wears gloves also

In public washrooms, I use a paper towel to touch the faucets and doors.

I don't have any ideas about the other things. Maybe if he can carry a special

towel in a backpack (sealed in a zip lock bag) and this can be his 'safe towel'.

>

> >

>

> > Surviving the holidays: Tips for getting relatives to interact with your

>child

>

> >and dealing with insensitive comments by family members.

>

> > http://bit.ly/bV5frR

>

> >

>

>

[Guest guest]

Thank you Bonnie. I will check it out.

-Sherri

________________________________

From: Bonnie Dohogne <bdohogne@...>

IPADDUnite

Sent: Mon, November 15, 2010 12:22:01 PM

Subject: Re: Re: Dealing with relatives over the holidays

 

Hi,

My son has some OCD issues along with his autism.  He had some individual

sessions with a therapist from the Center for the Treatment of Anxiety and

Agoraphobia (maybe not quite the exact name) on the North Shore that were very

helpful. The therapist used a cognitive-behavioral approach practicing some

things with Jonathon and then behavioral " homework " to do between sessions.

The germ issue sounds obsessive-compulsive ?? -- so maybe the above could help.

Best wishes,

Bonnie Dohogne

From: Sherri Schneider <benefithelpss@...>

Subject: Re: Re: Dealing with relatives over the holidays

IPADDUnite

Date: Monday, November 15, 2010, 9:09 AM

 

I will definitely try these. I will have to hand him the wipe - he won't touch

the container.

Thank you for the suggestions.

-Sherri

________________________________

From: cmfinato <cmfinato@...>

IPADDUnite

Sent: Sun, November 14, 2010 10:37:52 PM

Subject: Re: Dealing with relatives over the holidays

 

How about carrying a small container of disinfecting wipes and letting him clean

the grocery cart with them? Or you can carry a pair of disposable gloves and

have him wear one on the hand that does the bulk of the touching?

My daughter doesn't like to get her hands dirty, so when she goes to the

washroom, she uses disposable gloves to clean herself. When she helps me with

Christmas cookies, she wears gloves also

In public washrooms, I use a paper towel to touch the faucets and doors.

I don't have any ideas about the other things. Maybe if he can carry a special

towel in a backpack (sealed in a zip lock bag) and this can be his 'safe towel'.

>

> >

>

> > Surviving the holidays: Tips for getting relatives to interact with your

>child

>

> >and dealing with insensitive comments by family members.

>

> > http://bit.ly/bV5frR

>

> >

>

>