A Halloween Adventure in Autism (11/12) New Thread Begun on TR Board!

[KathyRN137]

Kathy- That is cool that the author of that article has Aspergers makes it more relatable, would like to share that with my group of Moms(with different children on different places on the spectrum) here where I live if that is ok.

I hope they enjoy it!

Thanks for sharing that essay, Kathy. I think it puts things into terms that people who are unfamiliar with autism can understand.

You're welcome! As a physical therapist, I'm sure you understand a lot of the issues our kids face... thanks! (You're just about over that first trimester hump, right??)


Kathy

 

[cjackearl]

Hi Kathy, thanks for the insightful issue. It was enlightening. I've experienced that disconnect many, many times.

 

[PracPerfPatricia]

Hey Kathy,

I hope the tooth continues to be pain free... In a way-I guess in a way if it had to happen better now-then later...(like during your trip...)

I love the pictures of Tricia at BBB-so wonderful-aren't you glad you she did it?

(Emily was 11-and that was definitely pushing it...I kind of encouraged it...she looked really cute (if I do say myself......but when she looks at the pictures she gets really upset-"I can't believe you made me do that.."-umm I didn't exactly tie her down......I think she was conflicted...and this way she can blame me...)

Now for some reason last month we did Pirate's League for both Em and David -and that was ok-that's "cool" so apparently being an Emperess-which is basically a pirate princess is cool but a regular princess is not...

BTW-thanks for the Wllliam Stillman website-it looks great and I'll be going back and bookmarking it so I can read through it later...I may share some of his stuff with our teacher...I was very impressed w/ her last night...

?-where are all of you getting the Autism (thingies-for lack of a better word) to but in you signatures?...I've seen the stamp, the mickey with ribbon...I don't know if there are more...(I feel like I'm picking out a sofa...hmmm not what autism awareness thing would look the best in my signature...but honestly is there a place you can find them all?

Hope your day is a good one...

 

[Tnkrbelle565]

Love the article...I'm sending it on if you don't mind

 

[All7OfUs]

What a beautifully written essay!! Thanks for sharing that with us who struggle with these issues everyday- and with those who watch from the outside. Writing and thinking like this can go a long ways in drawing those on the "outside" into the "inside".

 

[mom2mek]

Thank you for sharing that article, Kathy! Those words ring very true!!

Love the BBB pics of Tricia! She looks adorable!

Sara

 

[mousescrapper]

Kathy and Mousescrapper - here is the link to the Now and Then thread :

http://www.disboards.com/showthread.php?t=880727

Awesome, thanks...I was trying to find it yesterday...

Wanted to tell you that Jeff and I walked in the Walk Now for Autism fundraising walk this past Saturday. His company was a major corporate sponsor. Although I don't know anyone personally affected by autism, I was thinking of Billy, Scrappie's Michael and Amy's Alex as I walked. Thanks so much for sharing your awesome kids with us!

thanks Missy

Sometimes it (autism) takes on a life of its own. How many times have I heard Tricia say, "I hate Autism," as if it was a mean person living in our house ...

Tell Tricia I completely understand and have that feeling many times....yes I do live w/ it each and everyday even though I'm not the one who actually lives with it and I know and see how it or the symptoms, the adversities and struggles affect us all.

Last night I recieved an email from my DSIL who is participating in an Autism Speaks Motorcylce run w/ her husbnad and 9 friends as a Team in honor of Michael (they rode last yr too)...there were two things that struck me as a read her words...one she refered to it as a disease and that Michael has a very mild case....

sorry I'm venting here Kathy.....

to me a mother of an autistic child and 3 other children who most likely in some degree are all on the spectrum...it is never a mild case. Michael is not a "case" he is a child struggling w/ things that yes we may all in a way deal w/ but he deals w/ it 24/7....you may not see it every second or every day in the same way...but it is there. IMHO...I don't think you can say oh he has a mild case and that kid over there has a severe case...as Patricia has mentioned it is a spectrum, a continum line that flucuates.

as well IMHO I do not consider Autism a disease...it is a disorder. It's not something you develop or catch or something that is going to go away...you are born w/ it and you can manage it w/ treatments and medications, but you can't "take it away".

(hope I don't sound like I'm on a soap box here)

As I was discussing this w/ DH last night...he said "Julie I hear what you are saying, but I think you are a little sensitive" well DUH!? I am a parent of an Austic child who at that very moment was rolling around and rocking back and forth on the floor, making tons of noises and irratating Margaret (his little sister) who was proceeding to whine in a frantic way w/ her hands waving in front of her face "my blankie" (she needed someone to get it for her)

ok I apoligize again...

and now to the wonderful and poignant essay EVERYONE HAS AUTISM...

thank you for sharing! I copied and pasted it in a Word doc and am going to send it to several friends and family....

I can tell you beyond all the fun Disney fixings I get here on the boards...it is you and the wonderful community of friends that I have made that make me

Scrappie J-

oh I almost forgot...I'm going to check out your Twitter

 

[Gabrielsbigtrip]

[/quote]Tell Tricia I completely understand and have that feeling many times....yes I do live w/ it each and everyday even though I'm not the one who actually lives with it and I know and see how it or the symptoms, the adversities and struggles affect us all.

Last night I recieved an email from my DSIL who is participating in an Autism Speaks Motorcylce run w/ her husbnad and 9 friends as a Team in honor of Michael (they rode last yr too)...there were two things that struck me as a read her words...one she refered to it as a disease and that Michael has a very mild case....

sorry I'm venting here Kathy.....

to me a mother of an autistic child and 3 other children who most likely in some degree are all on the spectrum...it is never a mild case. Michael is not a "case" he is a child struggling w/ things that yes we may all in a way deal w/ but he deals w/ it 24/7....you may not see it every second or every day in the same way...but it is there. IMHO...I don't think you can say oh he has a mild case and that kid over there has a severe case...as Patricia has mentioned it is a spectrum, a continum line that flucuates.

as well IMHO I do not consider Autism a disease...it is a disorder. It's not something you develop or catch or something that is going to go away...you are born w/ it and you can manage it w/ treatments and medications, but you can't "take it away".

(hope I don't sound like I'm on a soap box here)

As I was discussing this w/ DH last night...he said "Julie I hear what you are saying, but I think you are a little sensitive" well DUH!? I am a parent of an Austic child who at that very moment was rolling around and rocking back and forth on the floor, making tons of noises and irratating Margaret (his little sister) who was proceeding to whine in a frantic way w/ her hands waving in front of her face "my blankie" (she needed someone to get it for her)

ok I apoligize again...

and now to the wonderful and poignant essay EVERYONE HAS AUTISM...

thank you for sharing! I copied and pasted it in a Word doc and am going to send it to several friends and family....

I can tell you beyond all the fun Disney fixings I get here on the boards...it is you and the wonderful community of friends that I have made that make me

Scrappie J-[/QUOTE]


Aww don't apologize

Autism is so very frustrating (I don't think there is one word out there that describes everything it is). So many adjectives to decribe it are out there at least for me...and not all bad either It's hard enough to deal with it as a parent but it is so very hard to explain it to others because it is constantly riding the spectrum.

I took Gabriel to our Cub Scout open house for the first time ever. I am not quite sure what I was thinking I just wanted to try to get him involved with something and his Daddy was all for taking him.

We walked in and it was organized chaos. I went to the parent meeting and Peter stayed with Gabriel to play games in the hall.

I had wanted to talk to the organizer first to tell her Gabriel's needs to see if he could even be accomodated but wasn't able to in all the hub bub.

As I sat there in the meeting and they all talked about things that should come easily to children to earn their scouting awards.....I almost started bawling! It was that kind of slap in the face moment that you spoke about at the end of your last trip report

I certainly didn't want to speak up during the meeting and have the parents stare me down as I try to explain my quirky little boy but afterwards I spoke to the leader.

She said they didn't have any other 3rd graders in the pack/den? I said I guess I wouldn't care if he was group with the younger kids since he is delayed anyway. I don't know I just felt awful when we left.

My husband said one of the kids came up to Gabriel and kind of jumped at him in his face and Gabriel said "hey, that's not nice!".

Sorry for the hijack as well......

I guess the bottom line is that I wish every single person could read that essay and understand Autism even just one little bit.

Thanks for posting it Kathy and sorry for the hijack

 

[Dreamer & Wisher]

Thanks, Nancy! Like I said, I really should dig out the PP pictures from that day! Ethan's doing the Pirate League, right?? I remember you saying that your DD is doing BBB....

Kathy[/B]

I hope you post the Photopass pictures. We have gotten the kids hair done at the Barbershop but not BBB. I have thought about doing the Pirate's League but I am not sure if we want to spend the money.

Abby isn't doing BBB, she is too much of a Tomboy and won't have anything to do with the princesses anymore. She says Mickey is her favorite character.

I really liked the article you posted. I have definitely done a lot of those things. I have often turned up the radio to listen to a favorite song only to find myself daydreaming and not even listening.

My DH is quite the leg shaker too.

Ethan has some sensory issues and anxiety about crowds.

 

[KathyRN137]

Hey Kathy,

?-where are all of you getting the Autism (thingies-for lack of a better word) to but in you signatures?...I've seen the stamp, the mickey with ribbon...I don't know if there are more...(I feel like I'm picking out a sofa...hmmm not what autism awareness thing would look the best in my signature...but honestly is there a place you can find them all?

I use Photobucket to upload my pix, so I just searched "autism awareness" then copied and pasted the links into my siggie!


Kathy

 

[KathyRN137]

Hi Kathy, thanks for the insightful issue. It was enlightening. I've experienced that disconnect many, many times.

Me, too!

Love the article...I'm sending it on if you don't mind

Be my guest... there's a link to his website at the bottom.

What a beautifully written essay!! Thanks for sharing that with us who struggle with these issues everyday- and with those who watch from the outside. Writing and thinking like this can go a long ways in drawing those on the "outside" into the "inside".

Even I had to stop and think hard after reading that... it made me think how very difficult it must be for my son to get through each day... Imagine having to deal with all that carp!


Kathy

 

[KathyRN137]

Thank you for sharing that article, Kathy! Those words ring very true!!

Love the BBB pics of Tricia! She looks adorable!

Sara

Thanks, Sara!!


Kathy

 

[KathyRN137]

Tell Tricia I completely understand and have that feeling many times....yes I do live w/ it each and everyday even though I'm not the one who actually lives with it and I know and see how it or the symptoms, the adversities and struggles affect us all.....

....I can tell you beyond all the fun Disney fixings I get here on the boards...it is you and the wonderful community of friends that I have made that make me

Scrappie J-

oh I almost forgot...I'm going to check out your Twitter

I try to reassure Tricia that her feelings are quite natural, while at the same time trying to reinforce the need for patience and tolerance of her brother's annoying quirks. BTW, she is shocked that I opened a Twitter account!

And thanks... I know that we can all relate to each other on so many levels that it boggles the mind!!

Autism is so very frustrating (I don't think there is one word out there that describes everything it is). So many adjectives to decribe it are out there at least for me...and not all bad either It's hard enough to deal with it as a parent but it is so very hard to explain it to others because it is constantly riding the spectrum.

No hijacks perceived on my part... we're talking about the subject of autism and our kids, so it's natural that we all have strong feelings about the 800 lb gorilla that is always in the room!!


Kathy

 

[KathyRN137]

Ethan has some sensory issues and anxiety about crowds.

To tell you the truth, I'm a bit anxious about those crowds on Halloween night, myself!


Kathy

 

[MEK]

Kathy:

The picture of your daughter at BBB is beautiful. What a great memory.

Your article on autism was a very interesting read. Thank you for sharing that with us. I really don't know a lot about Autism, but I have two family members with real OCD (not the Disney kind that everyone jokes about, but the real deal) and it is interesting to see correlation the between the two conditions since both result for "misfiring" neurons.

 

[KathyRN137]

Kathy:

The picture of your daughter at BBB is beautiful. What a great memory.

Your article on autism was a very interesting read. Thank you for sharing that with us...

You're welcome!

Wow! Look at that ticker! Three days!


Kathy

 

[KathyRN137]

More from 2003...


On this first trip, Billy was very frightened of the "non-face" characters. I had been expecting it... he always screamed his head off when we tried to get a picture with Santa... but I have to admit that it was a bit of a disappointment to be taking tons of pictures of Tricia, alone, with all the characters.

We had breakfast at the CP and I felt for sure that he would warm up to his friends from the Hundred Acre Wood... after all, he was always watching Winnie the Pooh videos and he especially liked Tigger.

They had a lot in common!

Anyway, Tigger came over and Billy looked as if he was about to cry. We told Tigger and the CM handler about Billy's autism and I was expecting him to back off, but instead, he got down on the floor (to make himself appear smaller, I'm guessing.) He spent a lot of time playing with the kids and he let Billy "pet him." Eventually Billy felt comfortable enough to hold his hand and pose for a couple of pictures...


He looks a bit upset here, but he's saying, "Cheeeese!"

The money shot... one of the rare character pix we have with Billy from his first WDW trip!

Afterwards, Billy kept looking all around the restaurant and his face would light up when he saw Tigger. I was so grateful that "Tigger" was kind enough to spend some extra time with one of his biggest little fans!


Kathy

 

[eandesmom]

Awwww!

 

[Charleston Princess]

Precious pictures of the kids with Tigger -- that was so sweet of him to take the time for Billy to feel comfortable with him.

 

[Dreamer & Wisher]

Awwwww... your kids are adorable !