A Halloween Adventure in Autism (11/7) Prayer Request for Catie (p.129)

[Hedy]

Thank you for posting this, Kathy. I've said it before, but your trip reports are proof that normal is just a setting on the washing machine. You accept Billy for what he is (a kid with autism, and not stupid), and it shines in the way you write. It's just a part that is there, like Tricia being a bag of hormones some days.

 

[KathyRN137]

Thank you for posting this, Kathy. I've said it before, but your trip reports are proof that normal is just a setting on the washing machine. You accept Billy for what he is (a kid with autism, and not stupid), and it shines in the way you write. It's just a part that is there, like Tricia being a bag of hormones some days.

I can be that way myself, some days!!

I like the "setting on the washing machine" line!


Kathy

 

[mousescrapper]

Thank you, Julie!

While I sometimes do find myself mourning the child he could have been, I'm usually too busy loving and caring for the child he is now to dwell on it for long!

It can be diffucult when you are in the position of advocating for your child... so hard not to appear as though you are asking for special treatment or using his disability as a way to make life easier (like using the GAC at WDW).

But, when you live with the disability each and every day, you cannot help but making it such a huge part of your family's life... there's just no way around it!

Hopefully our friends and family will understand.


Kathy

That is where I am w/ Michael...

I did mourn and hard...now I am fighting...and that is hard...

having support like you makes it's bearable

 

[Poolrat]

I just don't know if it's a good rep or bad one...

All good my friend All good.

I can be that way myself, some days!!

I like the "setting on the washing machine" line!


Kathy

I agree I have those days too and loved the setting on the washing machine line as well.

 

[kayrosek]

Kathy thank you so much for that post. You really do have an amazing way with words and it really hit home. I had tears running down my face as I read it. There were places where all I would have to do was change the name and it could have been Jonnies story. Autism awareness is so important. I'll never forget the time, years ago, when at a restaraunt a waitress approched me about Jonnies stimming (he was "bonking" into the well padded back of the booth seat and making his "singsongy" noises). She asked why he did it and I explained that he had a form of Autism and what stimming was. I saw something in her eyes or demeanor as I explained but I understood what it was when she told me about her 4 yr old son, his lack of eye contact, developmental delays, and stimming. She had been listening to her families assurances that there was nothing to be concerned about (I remember some of those myself, I'm still trying to convince certain familie members that Jonnie really does have issues that are not simply in our heads or a disciplinary problem) but seeing Jonnie gave her something to compare her sons symptoms to and convinced her to have him evaluated. I hope he got the services he needed but I do believe that for any child the earlier they can get services the better. Jonnie was 11 months old when he started with physical, speech and ocuupational therapy and I do believe it has made all the difference. My mom thinks I bring up Autism too much but I consider it my duty as Jonnies mother to spread awareness, now if only I could do it as eloquently as you do.

 

[burly]

Thank you for your Story Kathy and everyone else's.
The pressure to get the vaccinations "done" before pre-school/school or not being able to register for that year, is silly also.
It almost forces a parent to make a 'misled' decision on vaccinations.

Is there any proof that countries without strict vaccination schedules have less occurance of these diseases.
My sister was diagnosed with breast cancer while nursing her son, she always thought that it was her "fault".
but i think i remember that his shots were also bunched, because of her treatments and getting behind.....hmnmnm

again. thanks

 

[Charleston Princess]

Beautiful post about Billy's autism, Kathy!

Happy Easter!

 

[michellem1118]

Kathy, your post about Billy's autism really moved me. I hope you and your family have a wonderful Easter.

 

[KathyRN137]

That is where I am w/ Michael...

I did mourn and hard...now I am fighting...and that is hard...

having support like you makes it's bearable

We really are all in this together!

Kathy thank you so much for that post. You really do have an amazing way with words and it really hit home. I had tears running down my face as I read it. There were places where all I would have to do was change the name and it could have been Jonnies story. Autism awareness is so important..... My mom thinks I bring up Autism too much but I consider it my duty as Jonnies mother to spread awareness, now if only I could do it as eloquently as you do.

Spreading awareness could have the very real result of fewer children developing autism or at the very least, getting therapy in a more timely way. I think its worth the time we spend on it!

Thank you for your Story Kathy and everyone else's.
The pressure to get the vaccinations "done" before pre-school/school or not being able to register for that year, is silly also.
It almost forces a parent to make a 'misled' decision on vaccinations.

Is there any proof that countries without strict vaccination schedules have less occurance of these diseases.
My sister was diagnosed with breast cancer while nursing her son, she always thought that it was her "fault".
but i think i remember that his shots were also bunched, because of her treatments and getting behind.....hmnmnm

again. thanks

Thank YOU! We may never really know for sure what the autism triggers are, but vaccines do look awfully suspicious... especially since the medical community so vigorously refuses to acknowledge the possibility...

Its a reasonably simple thing to spread out childhood vaccinations and although it may not help, it certainly cannot hurt anyone.

So why not try?

Beautiful post about Billy's autism, Kathy!

Happy Easter!

Happy Easter to you too, CP!!

Kathy, your post about Billy's autism really moved me. I hope you and your family have a wonderful Easter.

Thanks, Michelle, and the same to you!!


Kathy

 

[Mommy2LittleVols]

Kathy - Thank you so much for that beautiful post. As so often happens when I'm reading your reports, I found myself moved to tears. You have such a way with words. I also believe that there is a genetic predisposition for ASD followed by a trigger. I'm really not sure what Dakoda's was. I'm actually prone to believe that it was one of his early sets of shots - 4 or 6 months. He met most of his earliest milestones, but then began to fall behind (and regress). He was diagnosed over 6 months ago, and some days I feel like I'm still in mourning for the child that he could have been, even though I love him more than life itself. I have a lot of "mommy guilt"...for feeling like I should have pushed to have him evaluated sooner, for still wondering if it was somehow my fault, and also for my DD, Sarah Kate - I feel like Dakoda gets so much of our time and attention that I sometimes wonder if she gets enough.

Anyway, thank you again for sharing Billy's story. Would you mind if I shared it with DH? I think that he would get a lot out of it.

 

[MHTeacher]

Kathy, what a wonderful post about autism.

As a special education teacher, I know what a wonderful blessing it is for a child to have an informed, parent advocate for them. I'm so glad that Billy has you!

 

[Sarah2010]

Thank you for sharing your story.

Big hugs for you and your family

 

[KathyRN137]

....Anyway, thank you again for sharing Billy's story. Would you mind if I shared it with DH? I think that he would get a lot out of it.

Please do!

Kathy, what a wonderful post about autism.

As a special education teacher, I know what a wonderful blessing it is for a child to have an informed, parent advocate for them. I'm so glad that Billy has you!

Thanks for the compliment, but more importantly, thanks for the work you do with children every day... its not easy, I know!


Kathy

 

[Janell]

I have loved reading your TR. Thank you for sharing.

And thank you for sharing your story about Autism. There isn't enough awareness out there and its really wonderful when someone like you shares your story. We don't know what causes autism. But if it helps a child to spread out the vaccines, then its just one step to help that child develop. In our fast pace world, I can see parents giving to many vaccines at once. And although we don't know if that causes it or not, we know we should space them out. Its the awareness that we all need to know what we should do to try and help our children. Thank you so much for sharing your story.

Also you said your nieces has scoliosis. I too have scoliosis. I had two surgeries in 1991 when I was 13 years old. Somethings I have found that help with the daily pain I am in is one MBT shoes that can be found at different places, where i find them is walkingcompany.com They are very pricey and if she is interested she may want to try the Sketchers ones first. But don't give up on the MBT(they do go on sale, just sign up for the emails). I also found a Physical Therapy Office, that have a work out center in it. The one I go to has a trainer who helps you make a work out for what you need. I still have a curve, so I need a lot of stretching. The trainer set up a program that really does help. It way better then 24 hour fitness trainers who really don't understand about scoliosis. My trainer has been able to help me get rid of pain(as long as I do what I am suppose to do lol) pain in which I have had for 20 years. Im not sure if your niece has pain or how bad her curve is, so hopefully none of this is needed. But I sure wish i knew this when I was younger.

 

[KathyRN137]

Thank you for sharing your story.

Big hugs for you and your family

Thanks, Sarah, we can always use more hugs!!

I have loved reading your TR. Thank you for sharing.

...Also you said your nieces has scoliosis. I too have scoliosis. I had two surgeries in 1991 when I was 13 years old...... I still have a curve, so I need a lot of stretching. The trainer set up a program that really does help.... Im not sure if your niece has pain or how bad her curve is, so hopefully none of this is needed. But I sure wish i knew this when I was younger.

Hi Janell, and thanks for posting and for sharing your scoliosis issues!

Fortunately Catie does not have any pain and hopefully will not require surgery. She does need to wear the hard plastic brace (which she hates) as much as possible and I believe she does follow a home excercise routine for stretching.

I will pass your advice on to my sister... thank you!


Kathy

 

[SoonerGirl]

Hi Kathy! Well, I'm embarrassed to say that I just recently clicked on your TR link, took my long enough! I've spent the last few days catching up on your report. You are an amazing storyteller, I feel like I'm right there with you on your vacation! Thanks so much for your links, it's made it very easy to catch up.

And thank you for sharing Billy's story, I was very moved by what you wrote. I know very little about Autism and your report is helping me to understand it better. You're one amazing lady!

 

[KathyRN137]

x
Back in October I submitted an essay to Travelers' Tales. It was the first piece of writing that I have ever submitted anywhere. The essay, titled The Fun Run, was about my experience running the Pirate and Princess Family Fun Run 5K during the WDW Marathon Weekend of 2007.


Today I received an award certificate in the mail:

Travelers' Tales

Fourth Annual

SOLAS AWARDS​

For Best Travel Writing
2010​

Travel and Sports

BRONZE​

Wow! You could have knocked me over with a feather (pen!)

There's no big cash award or anything, but there is a possibility my essay will be included in a future Travelers' Tales anthology.


Thanks to all of you who have complimented my writing in the past... I guess you're not just sayin' that!


Here is a link to the essay, posted in my blog, if you care to read about my first (and so far, only) experience with running at WDW!

http://wdwadventuresinautism.blogspot.com/2009/10/how-about-re-run.html
x
Kathy

 

[KathyRN137]

Hi Kathy!.... I've spent the last few days catching up on your report. You are an amazing storyteller, I feel like I'm right there with you on your vacation! Thanks so much for your links, it's made it very easy to catch up.....

Hi Michelle! Glad to have you!

I learned about the beauty of links from other DISers... they definitely make a TR more user-friendly!!


Kathy

 

[Charleston Princess]

Kathy, that is absolutely fantastic!!! Congratulations!!! While there isn't an award attached, the affirmation of your writing is probably the best reward ever, isn't it??? I am so excited for you!

 

[Poolrat]

What an honor Kathy!!!! I hope this gives you the boost you need to get back to writing your book.
I knew all of us couldn't be wrong. We all keep telling you how talented you are, now you have proof.
Congrats !