Re: Spontaneous Family Gatherings

December 28, 2006

Put your child first of course. Unless you are willing to allow him a huge

meltdown at one of their " spontaneous noise makers " . All those activities

are huge with noise!!!

Elie got over the bowling alley one and actually enjoys bowling now - but it

took YEARS of very small doses when the place was empty until now we can go

for " Rock and BOwl " for a little while. Basketball in a gym?????

OYMYG_D!!!!!!!!!!POOL- Billiards????????? Elie would throw the balls.

I think you should suggest that Grandma takes him - you stay home. See how

they enjoy that!

Sara - Choose to make lemonade, not complain about the lemons.

>

>Reply-To:

>To:

>Subject: Spontaneous Family Gatherings

>Date: Fri, 29 Dec 2006 01:31:06 -0000

>

>How do you all deal with spontaneous family gatherings? Reason i ask

>is because, my in laws are very spontaneous people. When ever out of

>town family comes into town, things are done on the spur of the

>moment, and they get very touchy if we do not participate.

>

>For instance, last night was dinner and playing pool at a local

>establishment(alcohol free). They coudln't really understand why I

>would not take Landon to this establishment.(Firstly, he's never been

>there, that's a huge minus since he doesn't like change. Second, it's

>noisy, and his sensory issues include obsesseive noise.)My husband

>went, and I felt like a huge heel for not participating. At first, he

>wasn't going to go either, but they kept calling, asking him why we

>weren't going to go, and got really put off by the fact that we might

>not attend.

>

>Tonight, they called while we were eating dinner to tell us that

>tonight's activity was bowling, and we should go. My DH tells them

>that we are eating dinner and can not go at the moment. So they show

>up at the door. While we're eating dinner. To tell us that we need to

>participate. I politely explained that Landon would never step foot in

>a bowling alley, and even if I was lucky enough to avoid the " stop,

>drop and flop " long enough to get him in the door, the noise alone

>would send him right back out of it. They could not even begin to

>grasp this concept. They ended up not going to the bowling alley but

>instead going to a local church to play basketball. And again, I feel

>like a huge heel for not going, because I'm really expected to. They

>just can't grasp the concept that bringing Landon to places he's never

>been to before, is a HUGE fight. Plus, he's not going to just sit

>there and watch these people play basketball, and the noise alone

>would probably be enough to send him into a fit of stress and he

>doesn't need.

>

>Why can't people just take my word for it?! Even my husband looked at

>me like, " Why wouldn't you take him to a metal building that has a

>large hardwood floor?? "

>

>I don't do anything spontaneous with Landon, and I can't seem to

>convince my in laws that I don't do things like this for very good

>reasons. Especially since he's having unpredictable seizures right now!

>

>So my question is, how can I convince my family that I must live in a

>well planned, scheduled environment. That I must go to places that

>Landon will have an easy out when he gets too much input, a place

>where he can go to be alone?

>

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December 28, 2006

Liz,

I sooo feel for your situation. Fortunately, I don't have to deal with this

issue because I have no in-laws and Jordan's dad pretty much disowned her

from birth. However from what others on the list have said, I do agree with

this: Let MIL take your son for just a half an hour... let her deal with the

consequences of his behavior. Perhaps it might click with her.

Unfortunately, when family members are not in the picture on a regular basis

(meaning close by enough that there is a strong bond and they are always

around), they don't seem to understand the day to day routine that these

children need and must have. I can still remember when Jordan was born and

my grandmother asked me if her having Down syndrome was something that the

doctors could " fix " . That was 11 years ago and since then, she's been

educated on Down syndrome because she's close by and has frequent

involvement with Jordan. She's learned how to treat Jordan and how to have

patience in waiting for Jordan's processing to kick in before she can answer

a question. I feel for you and your situation.

While I can't imagine how difficult this must be for you, just keep trying

to educate your in-laws about autism. Perhaps you could invite them to an

Autism fund-raiser in your community? We have a walk for autism day here, I

believe. Perhaps that would be a start so that your in-laws could get

involved in " your " world. The next time they are in town, have things

planned for them to do that would get them involved in the awareness aspect

of Autism. Maybe they should visit your son's school (if that's possible

without interruption) so they can see first-hand for themselves. Just some

ideas off the top of my head. I hope something can be of help to you.

Hugs,

Judi S.

December 29, 2006

Hi Laci,

I can say I feel your pain in having relatives that just don't get it. My mom

is a perfectionist and at Christmas would hardly look at Hannah. I opened up

one of those really nice DS calendars that a friend gives me every year and I

was showing my mom how cute the kids are pictured and she refused to even look

at it. Oh well, my dad more than makes up for it. He pops in at school and

the verbal kids in her class yell, hey everyone grandpa's here! Hmmmm, no wonder

they're divorced. But I love my mom dearly too - probably my best friend.

Anyways, how old is Landon? One thing that has helped us take Hannah to

places is her pushchair. Do you have such a thing? When she outgrew her

stroller,

we got her a " glorified " stroller so we wouldn't have to deal with the stop,

drop and flop. It is a place of security for her. We can take her nearly

anywhere with it, plus with a handicap placard that helps too. It holds kids up

to

120 pounds, bought it online. Hannah is nearly 10 and now I am working on

transitioning her out of it for certain things like the grocery store. She will

hold

onto the cart and can do a short grocery run.

Hannah will cover her ears at times when we can't figure out what is wrong.

she cries everytime she hears someone singing the Happy Birthday song. But

the places that shocked me that she loves is the gym and bowling! I think her

love of balls outweighs the hatred of the noise. I know it may be hard, but

could you take 2 cars and try it once? If he hates it then the next time they

ask

you to go, you can say, " no, remember we went there, did that, couldn't stay

long enough to get the t-shirt? "

Also I remember someone posting on here around Christmas what life is like

for a kid with Autism from the kid's point of view. " When things get loud, it is

scary for me, so I may run to my room and slam the door, etc..... " Anybody

remember that? You could send that to them with his picture at the top ahead of

time.

Just some ideas,

a (Hannah 9)

December 29, 2006

In a message dated 12/28/2006 8:37:42 P.M. Eastern Standard Time,

laciwife@... writes:

So my question is, how can I convince my family that I must live in a

well planned, scheduled environment. That I must go to places that

Landon will have an easy out when he gets too much input, a place

where he can go to be alone?

I have issues with my in laws but for other reasons. No matter what was

said it did not always sink in.

One suggestion that may work is to put all of your thoughts on paper. Make

a chart/document/throw in some Internet, medical facts and create a how to

list for those in your life that just do not get it.

Explain that you must live your life this way and would appreciate it if

they would be considerate of how things must be for the sake of your child and

their well being. While you are sure they mean well you are also sure they

would not want to put any undue pressure or stress on your child so you are sure

they will understand!!!!!.

Add that now that you have explained everything you do not expect any more

pressure in the future.

I would not feel the slightest bit guilty for their inability to grasp the

concept. That is their selfish problem and their issue, NOT yours.

All the best and good luck!

Blessings, W

in CT

homeschooling mom to AJ (12), (8), ^l^,

(just turned 5, Trisomy 18 mosaic aka syndrome) and Birgitta (age 3,

adoption finalized 2/1/05 !!, Trisomy 21 aka Down's Syndrome, Fetal Alcohol

Syndrome, Autism, SID )

December 29, 2006

In a message dated 12/28/2006 8:51:04 P.M. Eastern Standard Time,

pastmidvale@... writes:

I think you should suggest that Grandma takes him - you stay home. See how

they enjoy that!

Love that idea, even better.

My MIL is always telling me I need to get out and let her take the kids.

Well, one day while I was home I let her deal with them all. Birgitta started

banging her head on the floor and that was that. I only let my mother

babysit or my sister with her 2 daughters will help out.

One of the biggest reasons for that is because I trust them to know when

Birgitta has had it and I might need to come home. It has only happened once

that I was called to come back and it was at the end of the evening anyway.

But I know my MIL would allow Birgitta or to go ballistic and bang away

before she would call me, if she would call me. By then it is too late.

Birgitta really needs someone one on one and my MIL just can't handle it.

She means well but she can't handle it well.

Blessings, W

in CT

homeschooling mom to AJ (12), (8), ^l^,

(just turned 5, Trisomy 18 mosaic aka syndrome) and Birgitta (age 3,

adoption finalized 2/1/05 !!, Trisomy 21 aka Down's Syndrome, Fetal Alcohol

Syndrome, Autism, SID )

December 29, 2006

Hi Laci,

You deal with it like what you have mentioned and that is working

around Landon.

I too, did not attend family or friends events for quite awhile.

I was not ready to deal with it, especially was not ready too

deal with these issues.

This is why I brag away about as now he is one of the first one

out the door when we go out and about where he is able to interact with

family and friends at restaurant, bowling, theatres, malls, just any

event in a group and not left behind, able now to tolerate his

surroundings but it took some detective work to figure out what was

going on with him and of course was I ready to deal with it if any

meltdowns? Stress? Chasing? Self-injury to myself or others? This

always had to be planned ahead if possible with a sitter or which

parent would end up staying or going. No you dealt with it alright

which I would of done when I had to deal with it in the past.

You tell them or give them copies of the Disability Solutions

Newsletter, give them a copy of what you just wrote in regards to

something stressful for you and could be traumatizing for Landon. This

is not to offend them just would like for them to understand Landon's

issues. It is not easy to just get up and go, my family did have to

learn all of this whether they liked it or not. They did not had to

deal with what I had to, when they would visit they always saw him calm

at home until I would have someone come over to my house to watch him

just for at least half an hour as I was still overprotective &

overworked due to always worrying of something happening as he was a

runner, escape artist, poop artist, etc. My house use to be Fort Knox.

Give them copies of the Family gathering letter, have you seen this?

Its usually passed around during the holidays. Thank them for wanting

to always include y'all then let them know there are many Landon's and

you belong to this support group list or that you have been praying for

some answers/solutions/strategies to learn how to deal with them but it

takes time as it all revolves around Landon. That you are educating

yourself in the mean time in regards to reading up about most people

with autism need specialized services over their entire lifetime and

you would like for Landon to learn how to adapt/to generalize in

different settings but once again, working around Landon or you will

never be able to go out and do the things like so-call family events.

Once they understand you will not feel like having to explain plus you

will also not feel alone as they might want to learn some more and will

lend a helping hand.

Irma,18,DS/ASD

December 29, 2006

Thank you, everyone for the ideas. I think I will get some printed

information to give to the family about Ds-Autism dual. I do also

think that alot of the problem stems from the fact that, they have not

witnessed his behaviors for themselves to know just how destructive to

himself and others he can get....perhaps it's time to change that.

>

> Hi Laci,

> You deal with it like what you have mentioned and that is working

> around Landon.

> I too, did not attend family or friends events for quite awhile.

> I was not ready to deal with it, especially was not ready too

> deal with these issues.

> This is why I brag away about as now he is one of the first one

> out the door when we go out and about where he is able to interact with

> family and friends at restaurant, bowling, theatres, malls, just any

> event in a group and not left behind, able now to tolerate his

> surroundings but it took some detective work to figure out what was

> going on with him and of course was I ready to deal with it if any

> meltdowns? Stress? Chasing? Self-injury to myself or others? This

> always had to be planned ahead if possible with a sitter or which

> parent would end up staying or going. No you dealt with it alright

> which I would of done when I had to deal with it in the past.

> You tell them or give them copies of the Disability Solutions

> Newsletter, give them a copy of what you just wrote in regards to

> something stressful for you and could be traumatizing for Landon. This

> is not to offend them just would like for them to understand Landon's

> issues. It is not easy to just get up and go, my family did have to

> learn all of this whether they liked it or not. They did not had to

> deal with what I had to, when they would visit they always saw him calm

> at home until I would have someone come over to my house to watch him

> just for at least half an hour as I was still overprotective &

> overworked due to always worrying of something happening as he was a

> runner, escape artist, poop artist, etc. My house use to be Fort Knox.

> Give them copies of the Family gathering letter, have you seen this?

> Its usually passed around during the holidays. Thank them for wanting

> to always include y'all then let them know there are many Landon's and

> you belong to this support group list or that you have been praying for

> some answers/solutions/strategies to learn how to deal with them but it

> takes time as it all revolves around Landon. That you are educating

> yourself in the mean time in regards to reading up about most people

> with autism need specialized services over their entire lifetime and

> you would like for Landon to learn how to adapt/to generalize in

> different settings but once again, working around Landon or you will

> never be able to go out and do the things like so-call family events.

> Once they understand you will not feel like having to explain plus you

> will also not feel alone as they might want to learn some more and will

> lend a helping hand.

>

> Irma,18,DS/ASD

>

December 29, 2006

Another thing that you might try is giving a suggestion list of things that

Landon does enjoy. Maybe just once they would be willing to participate in

something that he would enjoy. Even if later they moved on to more " non autism

liking " enjoyment. Does that make sense?

We are lucky that Jake actually likes all the noise and the loud booms that go

along with bowling and other activities. His is not so much the loud noise as

the tons of people. He at times just needs to get away from everyone.

Holly

Spontaneous Family Gatherings

How do you all deal with spontaneous family gatherings? Reason i ask

is because, my in laws are very spontaneous people. When ever out of

town family comes into town, things are done on the spur of the

moment, and they get very touchy if we do not participate.

For instance, last night was dinner and playing pool at a local

establishment(alcohol free). They coudln't really understand why I

would not take Landon to this establishment.(Firstly, he's never been

there, that's a huge minus since he doesn't like change. Second, it's

noisy, and his sensory issues include obsesseive noise.)My husband

went, and I felt like a huge heel for not participating. At first, he

wasn't going to go either, but they kept calling, asking him why we

weren't going to go, and got really put off by the fact that we might

not attend.

Tonight, they called while we were eating dinner to tell us that

tonight's activity was bowling, and we should go. My DH tells them

that we are eating dinner and can not go at the moment. So they show

up at the door. While we're eating dinner. To tell us that we need to

participate. I politely explained that Landon would never step foot in

a bowling alley, and even if I was lucky enough to avoid the " stop,

drop and flop " long enough to get him in the door, the noise alone

would send him right back out of it. They could not even begin to

grasp this concept. They ended up not going to the bowling alley but

instead going to a local church to play basketball. And again, I feel

like a huge heel for not going, because I'm really expected to. They

just can't grasp the concept that bringing Landon to places he's never

been to before, is a HUGE fight. Plus, he's not going to just sit

there and watch these people play basketball, and the noise alone

would probably be enough to send him into a fit of stress and he

doesn't need.

Why can't people just take my word for it?! Even my husband looked at

me like, " Why wouldn't you take him to a metal building that has a

large hardwood floor?? "

I don't do anything spontaneous with Landon, and I can't seem to

convince my in laws that I don't do things like this for very good

reasons. Especially since he's having unpredictable seizures right now!

So my question is, how can I convince my family that I must live in a

well planned, scheduled environment. That I must go to places that

Landon will have an easy out when he gets too much input, a place

where he can go to be alone?

December 29, 2006

Irma,

You always know how to give advice. I wish I had your experience