Re: My first I hate autism post

[Guest guest]

Re: My first " I hate autism " post

> ((((Debbie))))

> I'm sorry you're feeling this way. Right now, the diagnosis is

new. You

> know why he's feeling this way, but no one (outside of friends and

family)

> else does. It's bound to color how you look at him right now,

especially

> when he's acting up in public. Also, even if he wasn't autistic,

I'm sure

> you'd be comparing the twins behaviors. This doesn't mean you

love him

> less. I do think that this will pass though and you'll go back to

looking

> at him as your beautiful little boy who just happens to have

autism, instead

> of thinking of the autism first. Give yourself time. Except for

the lunch

> time episode, it sounds like you had a nice outing.

> As for almost missing the camel ride for him, I would have

probably done the

> same thing. Neither of my kids had an interest in that type of

thing when

> they were younger, and only one has an interest in horses now. I

would

> definately look into the horseback riding for him!

> Try to relax and not be so hard on yourself.

Jacquie's response here is dead on target!

--You'll find, though, that this knowledge will HELP you in these

situations

in a way you couldn't foresee before. When he freaks in a crowded

place,

instead of thinking, " well, he just needs to learn to be around

people and

behave, " now you'll be able to say to yourself, " he's autistic. His

senses

are overwhelmed by this. We need to find a quiet space. " and then

go to a

quiet space and see him calm right down, and know that your

knowledge of his

autism is helping you to make his life (and yours) easier.

> Sue

>

[Guest guest]

> We continue walking around, me pointing out animals and talking to a

> wall otherwise known as Jordan. I feel guilty for thinking that I'm

> talking to a wall otherwise known as Jordan ... and force myself to

> continue talking to him about the animals even though I feel like he

> could care less. >

Debbie,

One thing that you will learn about autism is that kids who don't

look like they are paying attention to anything are actually taking

in quite a lot...hang in there--it isn't always as bad as it seems.

You gave Jordan an opportunity...fresh air, sunshine, people to

relate to in your group, and a chance to look at different animals.

Don't discount what he may have learned or taken in during the day.

> Well he loves the camel ride, laughs and sings the whole circuit

they

> make. Now I feel badly for almost denying my son that

experience ...

> and why? Because he's autistic. <sighs> >>

You are still adjusting to the word " autistic " ...cut yourself some

slack. It is a stunning diagnosis for a parent to get handed. Takes

time to take it all in.

> I'm gritting my teeth and getting flustered because he's now turning

> bright red as he screams and cries. I'm embarrassed that this is

> happening in front of everyone and in a restaurant too. My SIL

diffuses

> the situation for me by taking him and walking him around. He's now

> quite happy to run between the tables and spin and spin ... and spin

> some more. <sighs> " My autistic son. " I think to myself. >

Sounds like you have a great SIL...I'm really glad she was there to

help you.

As for the issue of public displays of " unfortunate " autistic

behaviors...if you can, let go of it. Over time I have come to feel

that it is actually rather freeing to get embarrassed in public so

often...heck, I can go into any place with and (almost) never

get upset with what he does...after you've found yourself sitting on

the floor of a pharmacy with a kid pulling your hair, trying to bite

you, and howling while a crowd gathers, nothing much flusters you, ya

know? Let other people blush over their kids...mine may be stimming,

but that's just who he is...if someone can't accept that, it's their

problem, not mine.

I have a 13 yr old daughter whose greatest fear in life is to be

publicly humiliated...she HATES going out with in tow. We are

going to a family reunion this weekend, and when we were discussing

what she should take to wear, she said something that really struck

me... " I don't want to stand out. We ALWAYS stand out " --glancing

toward . I hate for her that she is in a stage of life where

it matters so much what others think...at this point in the game,

you'd be hard pressed to make me blush. And you know what? Life is

good. It's nice to realize that you can be free from the burden of

other people's judgemental glances.

> During all this, my daughter quite happily munches away on her

hotdog,

> French fries, and pieces of chicken strips. I unhappily eat my

hotdog

> as I watch Jordan twirl around in between tables. >

It must be very hard to have a second child of the same age to

constantly remind you of what Jordan " should " be doing. I struggle

with this, as well...comparing to his same age/younger

cousins. That will come up this weekend...I have a nephew who is six

months younger than , and I honestly can't say how that is

going to feel to see them side by side.

I had a very hard time coming to terms with the reality of '

challenges. I could look at the pieces of it, but I couldn't look at

the whole of it. I didn't take photos of for a while because

I couldn't stand to be confronted with how his disability showed up

in that empty little face. It was part of going through the

grief/acceptance process. But, as my dad would say, " It is what it

is " .... is who he is, and he has a right to be that person. A

very wise therapist once told me that an important part of helping

is accepting him as he is...and that has turned out to be so

true. Now that I am letting him be him, he is making real

progress...he is happy. It's not that you have to embrace

autism...but I do think that you have to look it straight in the face

and not be afraid of it. Sometimes I can do that...sometimes I can't.

> 2 months ago ... the same thing would have happened. But I would

have

> thought. " he's tired and hungry and can't decide which he wants so

he's

> just gonna be upset. " Today I thought " my autistic son can't cope

and

> is having a tantrum. " >>

Which gives you the tools to help him, doesn't it? Two months ago,

you didn't know WHY he was upset...now you do. That's better...even

if it doesn't feel that way right now.

> I really hope that eventually I'll stop looking at him like that and

> start seeing what I used to see ... before the diagnosis.>

I'm not sure that really happens, to be honest. Autism changes the

way we see our kids...but it doesn't change the way we love them.

THAT is what doesn't need to change...and that is what never will.

Remember...you are in the middle of one of the hardest parts of this

whole deal...that slap in the face they call " reality " . Don't be too

hard on yourself...it takes time. How much time? Not sure...still

doing it.

Raena

[Guest guest]

>now you'll be able to say to yourself, " he's autistic. His

> senses

> are overwhelmed by this. We need to find a quiet space. " and then

> go to a

> quiet space and see him calm right down, and know that your

> knowledge of his

> autism is helping you to make his life (and yours) easier. >

Exactly.

Raena

[Guest guest]

>

>The day went well, all the kids ooo'ing and ahh'ing over the animals ...

>except for Jordan of course. <sigh>

OH, I can remember those first months after the dx, and the differences were

SO big then. It doesn't help you at all that Jordan has an NT twin.

>Well he loves the camel ride, laughs and sings the whole circuit they

>make.

This is a wonderful thing, and yes, you should check out therapeutic riding,

BUT only when you are ready. He is still young, and there is plenty of time

to check into that sort of thing.

He decides to

>have a major meltdown.

The meltdowns continue, but they do get easier to handle. Eventually, you

don't notice the stares as much. You are entering THE hardest stage. Kep

was AWFUL from 2-4. He still has meltdowns and tantrums, but they are fewer

and farther between and I've gotten better at learning how to handle them.

It does get easier, believe me. I didn't believe anyone that told me the

same thing, but they were right.

>I really hate how it's changed what I think about him.

>

>I really hope that eventually I'll stop looking at him like that and

>start seeing what I used to see ... before the diagnosis.

Well, it will never be exactly the same, but you won't always see AUTISM

when you look in his face. Every once in a while, it still hits me (like

when he's spinning himself out of control), but most of the time, I just see

the beautiful, weird kid that has taught me more about life than any other

person in the world.

It's OK for you to feel this way Debbie. I hope you aren't feeling guilty

about all of these thoughts. We've all had them. It's just a part of the

grieving process as you learn to accept that autism is now a part of your

life. Take your time dealing with things, and lean on us when you have to.

Amy H--in Michigan

Kepler 5 ASD and Bethany 6 1/2 NT

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[Guest guest]

>>>>>>>>

I feel guilty for thinking that I'm

talking to a wall otherwise known as Jordan ... and force myself to

continue talking to him about the animals even though I feel like he

could care less.

<<<<<<

This actually is a great thing! Even though you dont' " think " he's

listening, the more you don't give up and keep talking, the more you'll see

how much he is absorbing!

>>>>>>>>

Well he loves the camel ride, laughs and sings the whole circuit they

make. Now I feel badly for almost denying my son that experience ...

and why? Because he's autistic. <sighs>

<<<<<<<<<

Ahhhh...but you DIDN'T deny him!!! And honestly, our decisions are based on

crap shoots. Most of the time we just don't know what the reaction is going

to be...It's hard.

>>>>>>>>

My SIL rode with him around

the circuit, and gets off with him saying I should look into animal

therapy for him. Can a 2 year old ride a horse? I don't know, but I

nod and agree with her. And given his reaction to the camel ride, I

really should look into it.

<<<<<<<<,

That is a very good idea!

>>>>>>>

2 months ago ... the same thing would have happened. But I would have

thought. " he's tired and hungry and can't decide which he wants so he's

just gonna be upset. " Today I thought " my autistic son can't cope and

is having a tantrum. "

I really hate how it's changed what I think about him.

I really hope that eventually I'll stop looking at him like that and

start seeing what I used to see ... before the diagnosis.

<<<<<<<,

Yeah... this is a tough one, and I'm not sure it ever goes away. To give

you a different perspective though, if you DIDN'T have the dx, as he got

older you'd be wondering " why does he DO this " all the time. Now you

know...and now you can find the right tools to help him.

We are all on this ride together...We've been where you are. Hugs to you

hon....vent when you need to!

BTW, what a GREAT S-I-L you have!!!!! Keep her around! You're gonna need

her!

Penny :-D