Re: Re: Prayer request today

[Guest guest]

Carolyn, what a blessing you have received and given with your son! And what a testimony of a mother's love. Thank you for sharing.

-----Original Message-----From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of CarolynSent: Thursday, May 10, 2007 5:27 PMAutism and Aspergers Treatment Subject: Re: Re: Prayer request today

Hi Jodi, to answer your question, Marty is my son. He is 42 years old now, and I have taken care of him at home all of his life. When he was about 3 the doctors, etc. who evaluated him then wanted me to send the poor little kid to the state institution and just walk away. I could not ever imagine doing that to him, would not have done that to his two older brothers or little sister either, and was really quite shocked they even suggested such a thing.

Then many years later, they took all the people who were living at the institution out of there, and developed group homes in the communities and shut down the institution, they decided it was barbaric, well duh!!

Marty just started having seizures one day when he was about 2 1/2, he would freeze up and just stare in space, then he started jerking a little, and then a few months later went into grand mal seizures. We never have known if his DPT caused them, the P has been known to cause seizures.

Anyway nothing ever controlled them, he has had thousands of them over his lifetime, used to have 20 bad ones a month, but we didn't know there was not going to be a cure for them at first. About age 3 or 4 I realized he has not progressed with his language, etc. any more, he just stopped progressing, and then pretty much quit saying the words he already knew, kept only a few, "Mama, Good boy, Pizza..."

He went to a special school for retarded children for many years, but never did do well there. I think it was because he was not retarded, but was autistic at the time. Things bothered him a lot, people, noises, etc., and he wouldn't do what they asked him to, put the round pegs in the round holes, and that sort of thing. I think it really aggravated him to be treated like he was retarded all the time, so all he did was fight them, and so was labeled non-compliant also.

Then they decided to mainstream him into public school, another new idea of theirs. So when he was about 12 he went into junior high. It was a disaster from the start, he hated everything about it, and fought me like a maniac just getting him into the building. Really, he used to roll around on the parking lot screaming like a maniac, and back then he used to bite his arm. It was the only way he could communicate to me how much he did not want to go to school. I finally just took him out for a long time, no school at all, and he was better. But then we tried high school, the school people talked me into it.

But it was a disaster too. I mean, don't you have to agree the system is weird, first they wanted to lock him up all his life, and then they wanted him mainstreamed, and turned into normal! Thank God, he has had a stable and consistent life home with me and his dad, and his brothers and sister, but his school experience was really nuts. They invented IEPs then and we tried that, had a Due Process Hearing, but lost it. I wanted a specialized program run on love, they thought I was nuts.

So I took him out of school at age 18, had enough of that torture, and yet he was wild and disruptive for a few more years with me too. He was mad, really mad, it was awful. He would bound around the house and tear things up, break things, throw things, attack me. It seemed to me he was trying to tell me something, that he was mad. He threw my purse at me, my Bible at me, my typewriter one time. So I just told him I loved him, and we would get through it, told him I would never be scared of him, it was not ever going to happen, and I held my ground with him, and one day it just stopped, quite amazing. I was praying at the time.

So we had about ten or so years of a pretty peaceful existence after that, I took him with me pretty much everywhere, he was fine, we went to the beach, on a road trip once, did lots of things, no more violence.

But these last five or six years we've had a different war, and he has been attacked by germs. In about 2001 he got real sick with epiglotitis in his throat and they had to intubate him, then he got a trach in his throat for a few months, and during that time got the food tube too. He was in ICU a week, and three more weeks in the hospital that time.

He got run down because he had so many seizures it has damaged his brain so he couldn't swallow well anymore, has no coordination or balance anymore either, but can still walk with assistance. Since he got on the food tube he's gained weight, at least 30 lb. and is strong and healthy now, stands straight, sits straight, he could not do that for awhile at all when he got so skinny from not eating well. I did not realize he had a problem at the time, and the doctor did not tell me!

Instead they made leg braces, thought that was the problem but really he was just too weak to stand up straight, and walk well, due to malnutrition. That is why his immune system got so run down. Oh how I wish they had told me sooner. This is why he got the epiglotitis, it was a strep infection in his throat. He had to have the strongest two antibiotics by IV for about a month.

Then he got pneumonia real bad, his lung collapsed, he had to have surgery on his lung to clean out blood and infection that had hardened, more germs to deal with, more IV antibiotics. It is a miracle he lived through that, just a few years ago.

We really keep an eye on it now, if he is coughing too much I take him to ER immediately. He just spent 3 days in the hospital April 12-14, but today when the doctor listened to him, he is better, the pneumonia is gone, and the antibiotic should clear up the infection around his stoma.

He did give me a compliment too, he said that statistically it was amazing he had not gotten infection already by now, statistically he said he was very rare, and said it was no doubt due to the good care he gets from me. That made me feel good. : 0 ))

Well I got on a roll here! Sometimes I do that, just need to vent out my feelings of the last week or so. I would like to go outside and work in my flowers, but allergies are killing me lately, so guess I had better stay in for a few days and let my nasal passages rest up a little, and hope the meds I am taking fixes the problem before I go out in the pollution and pollen again.

Anyway thank you for asking about my lovely son, what mother doesn't like to brag on their kids? haha Really, I am very very proud of my handsome sweet son, he is such a blessing to my life, and to everybody else in our family also, and even outside our family, and those darned doctors wanted to cheat us out of it too!

Oh well, times have changed now, nor more institutions praise the Lord!

Talk to you soon, much love to you all,

Carolyn

Re: Prayer request today

I am praying for you right now and thanking God for providing caregivers like you. You are a blessing and an inspiration.How old is Marty and how is he related to you may I ask? Jodi

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.467 / Virus Database: 269.6.6/794 - Release Date: 5/8/2007 2:23 PM

No virus found in this outgoing message.

Checked by AVG Free Edition.

Version: 7.5.467 / Virus Database: 269.6.6/794 - Release Date: 5/8/2007 2:23 PM

[Guest guest]

Hi Jodi, to answer your question, Marty is my son. He is 42 years old now, and I have taken care of him at home all of his life. When he was about 3 the doctors, etc. who evaluated him then wanted me to send the poor little kid to the state institution and just walk away. I could not ever imagine doing that to him, would not have done that to his two older brothers or little sister either, and was really quite shocked they even suggested such a thing.

Then many years later, they took all the people who were living at the institution out of there, and developed group homes in the communities and shut down the institution, they decided it was barbaric, well duh!!

Marty just started having seizures one day when he was about 2 1/2, he would freeze up and just stare in space, then he started jerking a little, and then a few months later went into grand mal seizures. We never have known if his DPT caused them, the P has been known to cause seizures.

Anyway nothing ever controlled them, he has had thousands of them over his lifetime, used to have 20 bad ones a month, but we didn't know there was not going to be a cure for them at first. About age 3 or 4 I realized he has not progressed with his language, etc. any more, he just stopped progressing, and then pretty much quit saying the words he already knew, kept only a few, "Mama, Good boy, Pizza..."

He went to a special school for retarded children for many years, but never did do well there. I think it was because he was not retarded, but was autistic at the time. Things bothered him a lot, people, noises, etc., and he wouldn't do what they asked him to, put the round pegs in the round holes, and that sort of thing. I think it really aggravated him to be treated like he was retarded all the time, so all he did was fight them, and so was labeled non-compliant also.

Then they decided to mainstream him into public school, another new idea of theirs. So when he was about 12 he went into junior high. It was a disaster from the start, he hated everything about it, and fought me like a maniac just getting him into the building. Really, he used to roll around on the parking lot screaming like a maniac, and back then he used to bite his arm. It was the only way he could communicate to me how much he did not want to go to school. I finally just took him out for a long time, no school at all, and he was better. But then we tried high school, the school people talked me into it.

But it was a disaster too. I mean, don't you have to agree the system is weird, first they wanted to lock him up all his life, and then they wanted him mainstreamed, and turned into normal! Thank God, he has had a stable and consistent life home with me and his dad, and his brothers and sister, but his school experience was really nuts. They invented IEPs then and we tried that, had a Due Process Hearing, but lost it. I wanted a specialized program run on love, they thought I was nuts.

So I took him out of school at age 18, had enough of that torture, and yet he was wild and disruptive for a few more years with me too. He was mad, really mad, it was awful. He would bound around the house and tear things up, break things, throw things, attack me. It seemed to me he was trying to tell me something, that he was mad. He threw my purse at me, my Bible at me, my typewriter one time. So I just told him I loved him, and we would get through it, told him I would never be scared of him, it was not ever going to happen, and I held my ground with him, and one day it just stopped, quite amazing. I was praying at the time.

So we had about ten or so years of a pretty peaceful existence after that, I took him with me pretty much everywhere, he was fine, we went to the beach, on a road trip once, did lots of things, no more violence.

But these last five or six years we've had a different war, and he has been attacked by germs. In about 2001 he got real sick with epiglotitis in his throat and they had to intubate him, then he got a trach in his throat for a few months, and during that time got the food tube too. He was in ICU a week, and three more weeks in the hospital that time.

He got run down because he had so many seizures it has damaged his brain so he couldn't swallow well anymore, has no coordination or balance anymore either, but can still walk with assistance. Since he got on the food tube he's gained weight, at least 30 lb. and is strong and healthy now, stands straight, sits straight, he could not do that for awhile at all when he got so skinny from not eating well. I did not realize he had a problem at the time, and the doctor did not tell me!

Instead they made leg braces, thought that was the problem but really he was just too weak to stand up straight, and walk well, due to malnutrition. That is why his immune system got so run down. Oh how I wish they had told me sooner. This is why he got the epiglotitis, it was a strep infection in his throat. He had to have the strongest two antibiotics by IV for about a month.

Then he got pneumonia real bad, his lung collapsed, he had to have surgery on his lung to clean out blood and infection that had hardened, more germs to deal with, more IV antibiotics. It is a miracle he lived through that, just a few years ago.

We really keep an eye on it now, if he is coughing too much I take him to ER immediately. He just spent 3 days in the hospital April 12-14, but today when the doctor listened to him, he is better, the pneumonia is gone, and the antibiotic should clear up the infection around his stoma.

He did give me a compliment too, he said that statistically it was amazing he had not gotten infection already by now, statistically he said he was very rare, and said it was no doubt due to the good care he gets from me. That made me feel good. : 0 ))

Well I got on a roll here! Sometimes I do that, just need to vent out my feelings of the last week or so. I would like to go outside and work in my flowers, but allergies are killing me lately, so guess I had better stay in for a few days and let my nasal passages rest up a little, and hope the meds I am taking fixes the problem before I go out in the pollution and pollen again.

Anyway thank you for asking about my lovely son, what mother doesn't like to brag on their kids? haha Really, I am very very proud of my handsome sweet son, he is such a blessing to my life, and to everybody else in our family also, and even outside our family, and those darned doctors wanted to cheat us out of it too!

Oh well, times have changed now, nor more institutions praise the Lord!

Talk to you soon, much love to you all,

Carolyn

Re: Prayer request today

I am praying for you right now and thanking God for providing caregivers like you. You are a blessing and an inspiration.How old is Marty and how is he related to you may I ask? Jodi

[Guest guest]

Hi Valarie, thanks for the HUG, I really needed it!! And I want to thank all the rest of you who wrote sweet letters to me too; Robin, , and Jodi, and I know many of you others were having good thoughts for us too. It just feels so good to know you other mothers know what I am going through, and are sending your love my way. Thanks!

Anyway for an update, Marty is doing much better I think. I called his doctor yesterday to report there was still some pinkness to his skin around the food tube stoma, but it wasn't oozing anymore, he'd told me last week to call him if it was not ALL gone by the time he finished his antibiotic, the Ceftin. So he decided he should take it for another week.

Other than that the allergies this year are really hurting my head and throat, are worse than ever. I think it is because of global warming, things are just blooming like crazy this year, much more blooms than in years past. So I am taking my meds; Claritin, Singulair, and nose spray, Flonase, and one for my lungs, Pulmicourt, a steroid inhaler. I can't stand it when my throat feels like someone is squeezing it.

It has been real windy out and is best if I stay in, but have to go out in a few minutes to take my mom to the doctor, she is getting an upper GI this morning. I kind of dread it, not that I don't want to see her, but I hurt my arm taking her wheelchair out of the trunk and don't know how I am going to do it now with a hurt arm. Funny how a person takes their arms for granted and then when one doesn't work it is so amazing.

Also plan to go and have lunch with my granddaughter, it is turkey gravy day, yumm, and will go to the Jog a Thon on Friday. I have pledged $1.00 a lap for them again this year, and no doubt will be sorry. Last year my granddaughter did over 20, and my grandson about 15. So there goes more of my money. Oh well, guess that is what grandmas are for.

Talk to you all soon, pray you have a nice day.

Carolyn in summery Oregon today

Re: Prayer request today

You & your family are in my thoughts & prayers I wish I could give you a hug so I am sending this to you & your family : ) ((( HUGS)))please keep us posted on how things are going Valarie : )>> Hi Jodi, to answer your question, Marty is my son. He is 42 years old now, and I have taken care of him at home all of his life. When he was about 3 the doctors, etc. who evaluated him then wanted me to send the poor little kid to the state institution and just walk away. I could not ever imagine doing that to him, would not have done that to his two older brothers or little sister either, and was really quite shocked they even suggested such a thing.> > Then many years later, they took all the people who were living at the institution out of there, and developed group homes in the communities and shut down the institution, they decided it was barbaric, well duh!!> > Marty just started having seizures one day when he was about 2 1/2, he would freeze up and just stare in space, then he started jerking a little, and then a few months later went into grand mal seizures. We never have known if his DPT caused them, the P has been known to cause seizures.> > Anyway nothing ever controlled them, he has had thousands of them over his lifetime, used to have 20 bad ones a month, but we

..

[Guest guest]

Dear Carolyn,

How cool. Our book has an orange sunrise. Isn't that what the Presence of God dawning feels like!

Going to look at it. I'd been meaning to ask you about it.

Love,

Francine

In a message dated 5/20/2007 2:25:14 P.M. Eastern Daylight Time, charper777@... writes:

Hi Amy,

I thank you so much for your encouragement. And now that I think about it my whole life story does prove that love works. Here my son is sitting right here with me, and the only thing I have ever used towards him was my love for him, and my faith in God.

I was wondering too if you have heard about my book, I know I have spoken of it before here, anyway will mention it again for those who may have missed it. My book is called, "Why Didn't Anybody Ever Tell Me About This! A Mother's Search for a Living God," and I am the author, Carolyn Mannila Harper MS.

You can find it by going to Google, type in Xulon press, and then type in my name, you can use Carolyn Harper, and it will come up.

It is the one down the page that has a brilliant pink sunrise coming up over a snowy black and white mountain, actually the mountain is just down the highway from us here in Oregon, one of the Three Sisters.

Thank you again for your support, YES love is the answer! I think there used to be a song like that back in the 70s, LOVE LOVE LOVE, da, da, da. haha

Got to go, late for church now. : 00 )))

Carolyn

Re: Prayer request today> > > I am praying for you right now and thanking God for providing > caregivers like you. You are a blessing and an inspiration.> How old is Marty and how is he related to you may I ask? Jodi>

See what's free at AOL.com.

[Guest guest]

Carolyn dear, I got Xulon, and can't get your book to come up with your name or the title. Do you have the url?

Love,

Francine

In a message dated 5/20/2007 2:25:14 P.M. Eastern Daylight Time, charper777@... writes:

Hi Amy,

I thank you so much for your encouragement. And now that I think about it my whole life story does prove that love works. Here my son is sitting right here with me, and the only thing I have ever used towards him was my love for him, and my faith in God.

I was wondering too if you have heard about my book, I know I have spoken of it before here, anyway will mention it again for those who may have missed it. My book is called, "Why Didn't Anybody Ever Tell Me About This! A Mother's Search for a Living God," and I am the author, Carolyn Mannila Harper MS.

You can find it by going to Google, type in Xulon press, and then type in my name, you can use Carolyn Harper, and it will come up.

It is the one down the page that has a brilliant pink sunrise coming up over a snowy black and white mountain, actually the mountain is just down the highway from us here in Oregon, one of the Three Sisters.

Thank you again for your support, YES love is the answer! I think there used to be a song like that back in the 70s, LOVE LOVE LOVE, da, da, da. haha

Got to go, late for church now. : 00 )))

Carolyn

Re: Prayer request today> > > I am praying for you right now and thanking God for providing > caregivers like you. You are a blessing and an inspiration.> How old is Marty and how is he related to you may I ask? Jodi>

See what's free at AOL.com.

[Guest guest]

Can you give me the Target url? I didn't know they sold books online?

In a message dated 5/21/2007 11:32:49 A.M. Eastern Daylight Time, charper777@... writes:

Hello Francine,

Well I looked too and it is not there at Xulon. I wrote to them to ask why, had assumed it would stay there indefinitely. I did look it up at Target, but there is not an author bio there. Hmmm. You can still order it at Target if you would like.

Thanks for letting me know about this, I had no idea it was not still there.

Carolyn

Re: Re: Prayer request today

Carolyn dear, I got Xulon, and can't get your book to come up with your name or the title. Do you have the url?

Love,

Francine

In a message dated 5/20/2007 2:25:14 P.M. Eastern Daylight Time, charper777comcast (DOT) net writes:

..

See what's free at AOL.com.

[Guest guest]

Can you give me the Target url? I didn't know they sold books online?

In a message dated 5/21/2007 11:32:49 A.M. Eastern Daylight Time, charper777@... writes:

Hello Francine,

Well I looked too and it is not there at Xulon. I wrote to them to ask why, had assumed it would stay there indefinitely. I did look it up at Target, but there is not an author bio there. Hmmm. You can still order it at Target if you would like.

Thanks for letting me know about this, I had no idea it was not still there.

Carolyn

Re: Re: Prayer request today

Carolyn dear, I got Xulon, and can't get your book to come up with your name or the title. Do you have the url?

Love,

Francine

In a message dated 5/20/2007 2:25:14 P.M. Eastern Daylight Time, charper777comcast (DOT) net writes:

..

See what's free at AOL.com.

[Guest guest]

Hi Carolyn, I have been looking on Xulon Press and can't find your book! I am disappointed because I really want to read it after reading your posts here.

If you or anyone else reading this knows where to find it, could you post a link here - or to my email address - so I could click and find it?

Thanks!

__

Estevan, SK

Canada

[Guest guest]

Hi Amy,

I thank you so much for your encouragement. And now that I think about it my whole life story does prove that love works. Here my son is sitting right here with me, and the only thing I have ever used towards him was my love for him, and my faith in God.

I was wondering too if you have heard about my book, I know I have spoken of it before here, anyway will mention it again for those who may have missed it. My book is called, "Why Didn't Anybody Ever Tell Me About This! A Mother's Search for a Living God," and I am the author, Carolyn Mannila Harper MS.

You can find it by going to Google, type in Xulon press, and then type in my name, you can use Carolyn Harper, and it will come up.

It is the one down the page that has a brilliant pink sunrise coming up over a snowy black and white mountain, actually the mountain is just down the highway from us here in Oregon, one of the Three Sisters.

Thank you again for your support, YES love is the answer! I think there used to be a song like that back in the 70s, LOVE LOVE LOVE, da, da, da. haha

Got to go, late for church now. : 00 )))

Carolyn

Re: Prayer request today> > > I am praying for you right now and thanking God for providing > caregivers like you. You are a blessing and an inspiration.> How old is Marty and how is he related to you may I ask? Jodi>

[Guest guest]

Oh, Carolyn, I was looking it up wrong. Once I did it right, I found it right away. It's really expensive to have it shipped to Canada ($44. US I think!) so I am going to see if I can use my friend's US post office box (we're only 13 miles from North Dakota) I'm sure having it shipped to a US address will save me some money on shipping!!

Estevan, SK

Canada

-- Re: Re: Prayer request today

Hi Carolyn, I have been looking on Xulon Press and can't find your book! I am disappointed because I really want to read it after reading your posts here.

If you or anyone else reading this knows where to find it, could you post a link here - or to my email address - so I could click and find it?

Thanks!

__

Estevan, SK

Canada

[Guest guest]

Hello Francine,

Well I looked too and it is not there at Xulon. I wrote to them to ask why, had assumed it would stay there indefinitely. I did look it up at Target, but there is not an author bio there. Hmmm. You can still order it at Target if you would like.

Thanks for letting me know about this, I had no idea it was not still there.

Carolyn

Re: Re: Prayer request today

Carolyn dear, I got Xulon, and can't get your book to come up with your name or the title. Do you have the url?

Love,

Francine

In a message dated 5/20/2007 2:25:14 P.M. Eastern Daylight Time, charper777comcast (DOT) net writes:

..

[Guest guest]

Hi Carolyn, yes I did find your book (I was looking it up wrong!) The shipping to Canada was $44.00 so I was going to try and get it shipped to my friend's US mailbox to save a bit of money!! - we're only 13 miles from North Dakota.

In the meantime, I got an email from Amazon.ca (the Canadian one) and if I ordered $39 worth of books I got free shipping. I pre-ordered the new Harry Potter book and to bring my total up past $39 I needed one more book and I was thrilled to see that your book was available from that site!! So I ordered it right away and I can't wait to get it!!

I know I'll enjoy it because I really enjoy reading your emails!!

Estevan, SK

Canada

-- Re: Re: Prayer request today

Did you find it yet ?

Carolyn

Re: Re: Prayer request today

Hi Carolyn, I have been looking on Xulon Press and can't find your book! I am disappointed because I really want to read it after reading your posts here.

If you or anyone else reading this knows where to find it, could you post a link here - or to my email address - so I could click and find it?

Thanks!

__

Estevan, SK

Canada

[Guest guest]

Did you find it yet ?

Carolyn

Re: Re: Prayer request today

Hi Carolyn, I have been looking on Xulon Press and can't find your book! I am disappointed because I really want to read it after reading your posts here.

If you or anyone else reading this knows where to find it, could you post a link here - or to my email address - so I could click and find it?

Thanks!

__

Estevan, SK

Canada