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

[kimmylaj]

kathy thanks for sharing your story. it gave me chills when you described it as a lurking monster. as a preschool teacher i seemed to have an overabundance of information about autism and when ryan was little i used to just watch him waiting for something bad to happen (lack of eye contact, loss of speech) . thankfully it never did but the fear was there. billy is so lucky to have you as his mom . YOU ARE WONDERFUL.
to all the other moms & dads of children on the spectrum YOU ARE WONDERFUL.
i am amazed by your strength and inspired by you

 

[mommytothreeboys]

Beautifully written Kathy.

 

[Mickey_Mom]

Hi Kathy... Happy Easter from my family to yours.

Thank you for putting into words that which can be so difficult to describe to well meaning friends and acquaintances who are blissfully untouched by autism. I personally agree with the predisposition of ASD at birth triggered by an environmental influence. Ariana had been responding to her name, played with her toys and looked me in the eye. She did however show early signs of being "in her own world" and we wondered if things had been made "worse".

Is that environmental influence the vaccinations? I don't know, but when it came time for Demetri to have his MMR shot, we opted to have him hit his milestones first and spaced them out over an extended period of time. My doctor didn't agree with us but understood our reasons. Now five years old, Demetri shows no signs at all.

Thank you for sharing with us.

 

[MaryAz]

So touching and beautifully written. I used to work with adults on the sprectrum. An amazing yet challenging job. Both my kiddos were on a delayed vac schedule and I did my best to educae my friends and other mom's. God bless your family on this Holy weekend.

 

[eandesmom]

Oh Kathy,

You made my cry. I am touched beyond belief at your writing, what a beautiful beautiful piece of work. It's interesting. Even though I have seen the monster in my nephew and dear friends child, and have heard the to vaccine or not to vaccine debate I have NEVER heard before the completely logical idea of simply spacing them out!

How very very sad that that simple idea isn't presented as an alternative. It makes so much sense!

 

[Lovemy3babes]

Wow, that is the first time I have read Billy's story. You're a wonderful writer Kathy and clearly love your son so very much. It makes me sick to think of all the immunizations my children have been subjected to and so many each visit to the ped. I thank my lucky stars each of them were not affected by that. Since Michael came to us through adoption, we had no part of his early vaccine schedule and I wonder if his symptoms and Autism were spurred by vaccines? I think it's a very interesting theory that makes so much sense.

 

[Poolrat]

Darn, it my whole post went poof!!!! ( not that way, otherwise i would put it on Jordan's report) Well it was too long anyway.

Beautifully written Kathy!

I too, believe my daughter is on the spectrum. Her symptoms were right from birth and I think I have been able minimize some of them becoming worse because of the psychology degree I earned in college and since brain function has always been an interest of mine. That, and dumb luck of course. Reading "Son Rise" in either High School or college really opened my eyes early on.

Last evaluation in middle school - she is now 19 - said she was too social. Really? The 1 hug I can actually remember from her ? The flat emotion, the no real eye contact? I can count the number of times this girl has actually cried. I am back in the Dr. Office now because of the struggles in college.

I hope too we can lock the monster in the closet or invite him to tea out in the open so we can tame him.

 

[mousescrapper]

for you and so many others...thanks!

I don't have the answers like you or what led to the "monster" being found in my oldest two children Michael (HFA) and Aldine (PDDNOS)...why did this happen?

Did I do something?

I no longer live in fear of the past and in doubt of what could have been but I protect, advocate, love and accept my children for who they are today and trust in God, and friends like you who fight this fight everyday w/ their own children...their future will be brighter and this thing called Autism...yes it may never go away...but the ugly head it rears at times will become less and less and the bounty of amazing things they love and can do will be seen.

My prayer is for awarness for awarness of teachers, adults, peers and everyone in between...

don't dumb in down

don't pretned it's not there...

Autism isn't an excuse for my son who doesn't have many friends or why a touch will cause him to "fight"

Autism isn't an excuse for why my daughter struggles in attention and follow-through or has difficulties managing emotion

It's not an excuse but it can not be excused from our children and the situations they face every day.

If more people were aware and accepted it, our children's lives will be just the same as the child "next door"


LIGHT IT BLUE!

thanks

J~

 

[Poolrat]

for you and so many others...thanks!

I don't have the answers like you or what led to the "monster" being found in my oldest two children Michael (HFA) and Aldine (PDDNOS)...why did this happen?

Did I do something?

I no longer live in fear of the past and in doubt of what could have been but I protect, advocate, love and accept my children for who they are today and trust in God, and friends like you who fight this fight everyday w/ their own children...their future will be brighter and this thing called Autism...yes it may never go away...but the ugly head it rears at times will become less and less and the bounty of amazing things they love and can do will be seen.

My prayer is for awarness for awarness of teachers, adults, peers and everyone in between...

don't dumb in down

don't pretned it's not there...

Autism isn't an excuse for my son who doesn't have many friends or why a touch will cause him to "fight"

Autism isn't an excuse for why my daughter struggles in attention and follow-through or has difficulties managing emotion

It's not an excuse but it can not be excused from our children and the situations they face every day.

If more people were aware and accepted it, our children's lives will be just the same as the child "next door"


LIGHT IT BLUE!
thanks

J~

Right on!!!!!

My child is NOT disrespectful, she just considers you furniture. She has no concept of body language and just "speaks the truth". We struggle everyday of how to appropriately respond.

It is not an excuse ....just an explanation.

 

[DisMomAmy]

Right on!!!!!

My child is NOT disrespectful, she just considers you furniture. She has no concept of body language and just "speaks the truth". We struggle everyday of how to appropriately respond.

It is not an excuse ....just an explanation.

Well said!

 

[KathyRN137]

Very touching story, kathy! I haven't read ANYONE'S comments between here and your post, but I can tell you that my own son (you already know this) is also on the spectrum. Also, having gone "wonky" after a large set of 15 month vaccines. Why would a child suddenly start flinging himself backwards on hardwood floor to bonk his head over and over?? Start flapping arms?? Become obsessive??

I can't help but to think, also, that that fateful trip to the ped. had something to do with it.

Thanks for your beautiful writing! And the chance to get us thinking!

Thank you too, Liesa, for sharing your story. I'm hoping that other parents will be able to make more informed choices about vaccines after reading about others' experiences.

Thank you for sharing with us, Kathy, it was very touching.

Although my kids are older I will suggest to others (like my niece who just had a baby) spacing out vaccinations. I had never heard that before but it makes perfect sense. Thanks for sharing that with those of us who had no idea...

Love that picture of Billy...he is precious!

You're welcome... I don't mean to preach, just share my opinion and hope it helps! That picture of Billy is one of my favs...

kathy thanks for sharing your story. it gave me chills when you described it as a lurking monster. as a preschool teacher i seemed to have an overabundance of information about autism and when ryan was little i used to just watch him waiting for something bad to happen (lack of eye contact, loss of speech) . thankfully it never did but the fear was there. billy is so lucky to have you as his mom . YOU ARE WONDERFUL.
to all the other moms & dads of children on the spectrum YOU ARE WONDERFUL.
i am amazed by your strength and inspired by you

Thanks, Kim, although sometimes I don't feel very wonderful or very strong...

I'll say one thing, though. Having friends and faith help a whole bunch!


Kathy

 

[KathyRN137]

Beautifully written Kathy.

Thank you, Missy.

Hi Kathy... Happy Easter from my family to yours.

Thank you for putting into words that which can be so difficult to describe to well meaning friends and acquaintances who are blissfully untouched by autism. I personally agree with the predisposition of ASD at birth triggered by an environmental influence. Ariana had been responding to her name, played with her toys and looked me in the eye. She did however show early signs of being "in her own world" and we wondered if things had been made "worse".

Is that environmental influence the vaccinations? I don't know, but when it came time for Demetri to have his MMR shot, we opted to have him hit his milestones first and spaced them out over an extended period of time. My doctor didn't agree with us but understood our reasons. Now five years old, Demetri shows no signs at all.

Thank you for sharing with us.

Thank you for listening and caring enough to write about your own familly.
Happy Easter to you, too!

So touching and beautifully written. I used to work with adults on the sprectrum. An amazing yet challenging job. Both my kiddos were on a delayed vac schedule and I did my best to educae my friends and other mom's. God bless your family on this Holy weekend.

Thanks, Mary. So glad you tweaked your kids' vaccination schedules so that they could be safer... who knows? It may have been a blessing...

Oh Kathy,

You made my cry. I am touched beyond belief at your writing, what a beautiful beautiful piece of work. It's interesting. Even though I have seen the monster in my nephew and dear friends child, and have heard the to vaccine or not to vaccine debate I have NEVER heard before the completely logical idea of simply spacing them out!

How very very sad that that simple idea isn't presented as an alternative. It makes so much sense!

I think it does! Spread the word!!


Kathy

 

[jordanyosh]

Thanks for sharing your story Kathy....

 

[KathyRN137]

Wow, that is the first time I have read Billy's story. You're a wonderful writer Kathy and clearly love your son so very much. It makes me sick to think of all the immunizations my children have been subjected to and so many each visit to the ped. I thank my lucky stars each of them were not affected by that. Since Michael came to us through adoption, we had no part of his early vaccine schedule and I wonder if his symptoms and Autism were spurred by vaccines? I think it's a very interesting theory that makes so much sense.

I honestly don't think that the vaccines alone are to blame... there has to be something in a person's DNA that makes them more vulnerable to autism.

ASDs are four times more prevelant in boys than in girls... so there must be some kind of genetics going on, too.

Darn, it my whole post went poof!!!! ( not that way, otherwise i would put it on Jordan's report) Well it was too long anyway.

Beautifully written Kathy!

I too, believe my daughter is on the spectrum. Her symptoms were right from birth and I think I have been able minimize some of them becoming worse because of the psychology degree I earned in college and since brain function has always been an interest of mine. That, and dumb luck of course. Reading "Son Rise" in either High School or college really opened my eyes early on.

Last evaluation in middle school - she is now 19 - said she was too social. Really? The 1 hug I can actually remember from her ? The flat emotion, the no real eye contact? I can count the number of times this girl has actually cried. I am back in the Dr. Office now because of the struggles in college.

I hope too we can lock the monster in the closet or invite him to tea out in the open so we can tame him.

I honestly feel more like kicking him in the....

for you and so many others...thanks!

I don't have the answers like you or what led to the "monster" being found in my oldest two children Michael (HFA) and Aldine (PDDNOS)...why did this happen?

Did I do something?

I no longer live in fear of the past and in doubt of what could have been but I protect, advocate, love and accept my children for who they are today and trust in God, and friends like you who fight this fight everyday w/ their own children...their future will be brighter and this thing called Autism...yes it may never go away...but the ugly head it rears at times will become less and less and the bounty of amazing things they love and can do will be seen.

My prayer is for awarness for awarness of teachers, adults, peers and everyone in between...

don't dumb in down

don't pretned it's not there...

Autism isn't an excuse for my son who doesn't have many friends or why a touch will cause him to "fight"

Autism isn't an excuse for why my daughter struggles in attention and follow-through or has difficulties managing emotion

It's not an excuse but it can not be excused from our children and the situations they face every day.

If more people were aware and accepted it, our children's lives will be just the same as the child "next door"


LIGHT IT BLUE!

thanks

J~

Thank you, Julie!

I honestly don't know if I have "the answer" and I probably never will... all I have are my suspicions...

Billy has been "on the spectrum" three times longer than he was "normal." 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

 

[KathyRN137]

Right on!!!!!

My child is NOT disrespectful, she just considers you furniture. She has no concept of body language and just "speaks the truth". We struggle everyday of how to appropriately respond.

It is not an excuse ....just an explanation.

Well said!

Seems we've always got explaining to do! That's why I love to call them "adventures" in autism!

Thanks for sharing your story Kathy....

Darn, it my whole post went poof!!!! ( not that way, otherwise i would put it on Jordan's report)

Thank you for the Jordan...

And as you can see, your reputation preceeds you!!


Kathy

 

[jordanyosh]

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

 

[ty&brenmom]

Thanks for sharing your story Kathy - you are a wonderful brave mother. I did not realize that April is Autism Awareness month.

 

[Beka]

Kathy -

Would you mind if I e-mailed your "Monster if the Closet" story to my peds teacher? There are a lot of parents in the RN program, and they're doing their pediatric rotations in doctors' offices, and I really think it'd be a good picture for those who haven't had exposure to autism.

TIA - Beka

 

[Northern Disney Girl]

Thank you Kathy for sharing your story! You have a beautiful and wonderful family. From the stories that you have shared here in your TRs, I have come to see your sweet son as such a precious gift to your family! He is such a great kid!

I have a good friend who is just now going through the process of trying to her daughter (4.5) evaluated for the possibility of Ausperger's Syndrome. It is a very difficult thing to watch her go through when I can't be there with her (she lives in British Columbia).

Your story is such a blessing to those who face the reality of this MONSTER every day!

Thanks for sharing!

 

[KathyRN137]

Thanks for sharing your story Kathy - you are a wonderful brave mother. I did not realize that April is Autism Awareness month.

Then I've done my job!

Kathy -

Would you mind if I e-mailed your "Monster if the Closet" story to my peds teacher? There are a lot of parents in the RN program, and they're doing their pediatric rotations in doctors' offices, and I really think it'd be a good picture for those who haven't had exposure to autism.

TIA - Beka

Sure, Beka, I don't mind.
Wow, you're almost done!

Thank you Kathy for sharing your story! You have a beautiful and wonderful family. From the stories that you have shared here in your TRs, I have come to see your sweet son as such a precious gift to your family! He is such a great kid!

I have a good friend who is just now going through the process of trying to her daughter (4.5) evaluated for the possibility of Ausperger's Syndrome. It is a very difficult thing to watch her go through when I can't be there with her (she lives in British Columbia).

Your story is such a blessing to those who face the reality of this MONSTER every day!

Thanks for sharing!

Thank you, Kimberly. My heart goes out to your friend. It is a very difficult thing to go through and I'm sure she appreciates you being there for her, even if by necessity its by phone or internet.


Kathy