Re: Why I can Never Die

[Guest guest]

Boy, Have I thought like this before! Really...Alot. I so worry about JJ when I am gone. Lois

Why I can Never Die

[Guest guest]

I also think about this all the time. What would our children do without us?Sent from my BlackBerry® smartphone with Nextel Direct ConnectFrom: " lois noland" Date: Sat, 28 Mar 2009 20:23:32 -0500To: <AutismBehaviorProblems >Subject: Re: Why I can Never Die Boy, Have I thought like this before! Really...Alot. I so worry about JJ when I am gone. Lois Why I can Never Die

[Guest guest]

Tim & I have had many discussions about this as far as our Nick goes. He will NEVER be able to live independently. We have thought that within the next few years we would begin seeking out other families in our situation, and opening a home, run by a coalition of concerned loving families, instead of strangers. Our thought process is that if enough individuals are working together physically, emotionally & financially, that the home produced from that can be a beautiful place, a real home. At least that's my hope & desire. I work for a psychiatric hospital run by the state, and have seen some of the residents that come from some state run homes. Although a lot of individuals working in those type of facilities care, so many others don't. I will NEVER allow my son to end up there either.

To: AutismBehaviorProblems From: skyzalex@...Date: Sun, 29 Mar 2009 01:26:31 +0000Subject: Re: Why I can Never Die

I also think about this all the time. What would our children do without us?

Sent from my BlackBerry® smartphone with Nextel Direct Connect

From: " lois noland" Date: Sat, 28 Mar 2009 20:23:32 -0500To: <AutismBehaviorProblems >Subject: Re: Why I can Never Die

Boy, Have I thought like this before! Really...Alot. I so worry about JJ when I am gone. Lois

Why I can Never Die

Windows Live™ SkyDrive: Get 25 GB of free online storage. Check it out.

[Guest guest]

WOW! That sounds great! But where will you get the money? And how do you know the next generation will step up to the plate? I am thinking 30 years down the road. Lois

RE: Why I can Never Die

[Guest guest]

Oh, Rhonda, I dream the same thing...and if we from every state could find the people and the resources to open homes like these, it would be so wonderful for our kids...I'm making sure that has loads of people in his life that love him...I know my brother would help, I also know my wonderful girlfriends would help...but it's best if I stay around for awhile....'s precious sister will help too....It is a huge burden to leave...it scares of all us, and every parent with a child who has special needs...no matter what kind of special.

e

To: autismbehaviorproblems Sent: Saturday, March 28, 2009 8:36:44 PMSubject: RE: Why I can Never Die

Tim & I have had many discussions about this as far as our Nick goes. He will NEVER be able to live independently. We have thought that within the next few years we would begin seeking out other families in our situation, and opening a home, run by a coalition of concerned loving families, instead of strangers. Our thought process is that if enough individuals are working together physically, emotionally & financially, that the home produced from that can be a beautiful place, a real home.. At least that's my hope & desire. I work for a psychiatric hospital run by the state, and have seen some of the residents that come from some state run homes. Although a lot of individuals working in those type of facilities care, so many others don't. I will NEVER allow my son to end up there either.

To: AutismBehaviorProbl emsyahoogroups (DOT) comFrom: skyzalexyahoo (DOT) comDate: Sun, 29 Mar 2009 01:26:31 +0000Subject: Re: Why I can Never Die

I also think about this all the time. What would our children do without us? Sent from my BlackBerry® smartphone with Nextel Direct Connect

From: " lois noland" Date: Sat, 28 Mar 2009 20:23:32 -0500To: <AutismBehaviorProbl emsyahoogroups (DOT) com>Subject: Re: Why I can Never Die

Boy, Have I thought like this before! Really...Alot. I so worry about JJ when I am gone. Lois

Why I can Never Die

Windows Liveâ„¢ SkyDrive: Get 25 GB of free online storage. Check it out.

[Guest guest]

I can't even allow myself to go there in my mind; Karac calls my house "home". I am 77 (a young 77 of course. LOL) A few times I have thought, "Father, just take us both together." Pat K

Re: Why I can Never Die

Boy, Have I thought like this before! Really...Alot. I so worry about JJ when I am gone. Lois

Why I can Never Die

Live traffic, local info, maps, directions and more with the NEW MapQuest Toolbar. Get it now!

[Guest guest]

I have thought that to Pat. I so wish we could find the "Cure" in our lifetime. Lois

Re: Why I can Never Die

[Guest guest]

Pat K...you are a very young 77 --- you can't go anywhere for a long while --- My MIL is 75, and she is also a very young 75...looks great, young in many ways.

Love to you,

e

To: AutismBehaviorProblems Sent: Saturday, March 28, 2009 9:00:46 PMSubject: Re: Why I can Never Die

I can't even allow myself to go there in my mind; Karac calls my house "home". I am 77 (a young 77 of course. LOL) A few times I have thought, "Father, just take us both together." Pat K Re: Why I can Never Die

Boy, Have I thought like this before! Really...Alot. I so worry about JJ when I am gone. Lois

Why I can Never Die

Live traffic, local info, maps, directions and more with the NEW MapQuest Toolbar. Get it now!

[Guest guest]

Lois, thanks for telling me that. It is comforting to know that someone just understands. You are a dear, and you do so much for all of us.

Just tonight I was thinking about Karac's older sister and wondered if she might be one who would take care of Karac. She loves Karac and worked at the special need's camp several times when Karac was there. She also lived with me her last two years of high school.

I have to believe that God will provide. Pat K

Re: Why I can Never Die

I have thought that to Pat. I so wish we could find the "Cure" in our lifetime. Lois

Re: Why I can Never Die

Live traffic, local info, maps, directions and more with the NEW MapQuest Toolbar. Get it now!

[Guest guest]

e, you are always so kind. I have to say at this time I seem to be blessed with good health, strength, and energy. I am thankful, and you are adorable. Love and blessings, Pat K

Re: Why I can Never Die

Boy, Have I thought like this before! Really...Alot. I so worry about JJ when I am gone. Lois

Why I can Never Die

Live traffic, local info, maps, directions and more with the NEW MapQuest Toolbar. Get it now!

Live traffic, local info, maps, directions and more with the NEW MapQuest Toolbar. Get it now!

[Guest guest]

Pat,

I have an older son but he has his own life with his family and Jake and I our really on our "own" with J. It scares me alot. Lois

Re: Why I can Never Die

[Guest guest]

I know, Lois, I know, but you have a saying on some of your emails that I read; it goes something like this, "Always in search of the cure.... I don't give up". That always inspires me. Pat K

Re: Why I can Never Die

Pat,

I have an older son but he has his own life with his family and Jake and I our really on our "own" with J. It scares me alot. Lois

Re: Why I can Never Die

Live traffic, local info, maps, directions and more with the NEW MapQuest Toolbar. Get it now!

[Guest guest]

This subject is so very hard. I just want to keep my sweet 8 year old boy... I know it isn't possible but the future is so uncertain and time goes so quickly that I will be dealing with this in what will seem like a blink of the eye. So many decisions, so much uncertain. Will be able live in a group home? I do feel we need to help him be as independent as possible while we are still here so he will not suddenly be without us and the place he lives. It is my hope that Paige will embrace and make him a part of the family she creates as an adult, so he has someone to go with on holidays and weekends. Will she look after him? It is such a big responsibility. I can see it going two ways, she adores him now and will

continue to or she will resent him for all the time and attention he gets. No matter how equal you try to make it he will always need more, we will always have restrictions on the things we do as a family because of what he can and cannot do. I look at her beautiful face and realize all she is losing out on. The big brother who should look after her, be her champion and check out her boyfriends (which would annoy her and please her at the same time). I know this will make her a better more understanding person in the long run and she is such a sweet girl I cannot imagine her not being there for . I think the best I can do now is help him become as independent as possible and make sure Paige doesn't feel left out. God will provide the right place at the right time for and he will keep Paige's heart open and loving where is concerned. God is in the present and while I feel I need

to be aware and prepared for what is coming only God knows the answer and he will lead me to it when the time is right. Kellie

To: AutismBehaviorProblems Sent: Saturday, March 28, 2009 9:28:28 PMSubject: Re: Why I can Never Die

Pat,

I have an older son but he has his own life with his family and Jake and I our really on our "own" with J. It scares me alot. Lois

Re: Why I can Never Die

[Guest guest]

If Paige is anything like you, and my guess is that she is; she will embrace . I also think you have many years to help be independent, and God has been answering our prayers. There is strength in numbers and there are a bunch of us praying.

Except for eating too many cookies; Karac had a good day today. Emil brought cookies for him and allowed him to eat too many of them. I only realized it after she left. No wonder he worked so hard for her today. LOL, and I had quit using primary reinforcers!

Did have a good day? Pat K

Re: Why I can Never Die

Pat,

I have an older son but he has his own life with his family and Jake and I our really on our "own" with J. It scares me alot. Lois

Re: Why I can Never Die

Live traffic, local info, maps, directions and more with the NEW MapQuest Toolbar. Get it now!

[Guest guest]

Yes, Kellie...I don't think Lily will be living with someday, but I have to believe that no matter where is, she will be very close to supervise, as well as have holiday's, birthday's etc...Paige, like told me early on...is going to be better for this experience in her life. it used to be that families stuck together...not as much anymore, sadly. This stuff either makes or breaks you...my money's on God and Paige...And !!!!! You are a wonderful mom who will do and grow him to the best of your ability...just like I will ...it does scare me to death, and it does go by fast...too fast. I have to trust that God, who began a good work in , will bring it to fruition...I'm praying that for all of our kiddos...You too Lois.

Love to you all....truly...

e

To: AutismBehaviorProblems Sent: Saturday, March 28, 2009 9:53:20 PMSubject: Re: Why I can Never Die

This subject is so very hard. I just want to keep my sweet 8 year old boy... I know it isn't possible but the future is so uncertain and time goes so quickly that I will be dealing with this in what will seem like a blink of the eye. So many decisions, so much uncertain. Will be able live in a group home? I do feel we need to help him be as independent as possible while we are still here so he will not suddenly be without us and the place he lives. It is my hope that Paige will embrace and make him a part of the family she creates as an adult, so he has someone to go with on holidays and weekends. Will she look after him? It is such a big responsibility. I can see it going two ways, she adores him now and will continue to or she will resent him for all the time and attention he gets. No matter how equal you try to make it he will always need more, we will always have

restrictions on the things we do as a family because of what he can and cannot do. I look at her beautiful face and realize all she is losing out on. The big brother who should look after her, be her champion and check out her boyfriends (which would annoy her and please her at the same time). I know this will make her a better more understanding person in the long run and she is such a sweet girl I cannot imagine her not being there for . I think the best I can do now is help him become as independent as possible and make sure Paige doesn't feel left out. God will provide the right place at the right time for and he will keep Paige's heart open and loving where is concerned. God is in the present and while I feel I need to be aware and prepared for what is coming only God knows the answer and he will lead me to it when the time is right. Kellie

To: AutismBehaviorProbl emsyahoogroups (DOT) comSent: Saturday, March 28, 2009 9:28:28 PMSubject: Re: Why I can Never Die

Pat,

I have an older son but he has his own life with his family and Jake and I our really on our "own" with J. It scares me alot. Lois

Re: Why I can Never Die

[Guest guest]

We all need those primary reinforcers once in awhile!! So glad Karac is had a good day. is doing great right now.. So many great social and communication gains that I am almost afraid to talk about them!! Last night he asked me for snuggle time!! That means he wants to get in my bed and tickle,talk and laugh right before he goes to bed. It was so cute and again the amazing eye contact. We also had peer play and he played TAG!! For years the girls and I have been trying to get him to understand and play but the concept of being IT and running away from someone who was IT just didn't click. We even took a 3by5 card with the word IT and glued it to a hat that whoever is IT wears. Yesterday we were at a Mcs playland and the

girls started playing tag and he ran!! and when he was it he chased them and looked Abby (his favorite) right in the eye and said TAG YOUR IT!! She was so excited and came up and said he looked me in the eyes!! We didn't even have the hat. These girls have been such a blessing, coming to our house or going places and trying to get to play along at least twice a month for over 2 years! He also went upstairs today to get dressed and stopped at the bottom step and said Mama I'll be right back, play ball? And then he came down and all his clothes matched! It has been a wonderful week and I know we will have many ups and downs but I am enjoying this completely! Kellie

To: AutismBehaviorProblems Sent: Saturday, March 28, 2009 10:06:38 PMSubject: Re: Why I can Never Die

If Paige is anything like you, and my guess is that she is; she will embrace . I also think you have many years to help be independent, and God has been answering our prayers. There is strength in numbers and there are a bunch of us praying. Except for eating too many cookies; Karac had a good day today. Emil brought cookies for him and allowed him to eat too many of them. I only realized it after she left. No wonder he worked so hard for her today. LOL, and I had quit using primary reinforcers! Did have a good day? Pat K Re: Why I can Never Die

Pat,

I have an older son but he has his own life with his family and Jake and I our really on our "own" with J. It scares me alot. Lois

Re: Why I can Never Die

Live traffic, local info, maps, directions and more with the NEW MapQuest Toolbar. Get it now!

[Guest guest]

e,

You are so sweet and yes Paige will be there for . It is just so hard to look at her little 3 year old face and place those expectations on her. At the same time I know she will be there, because she loves not because I want her to. Such a wonderful group of loving Moms on here. It makes me so grateful to be a part of this group. Kellie

To: AutismBehaviorProblems Sent: Saturday, March 28, 2009 10:25:01 PMSubject: Re: Why I can Never Die

Yes, Kellie...I don't think Lily will be living with someday, but I have to believe that no matter where is, she will be very close to supervise, as well as have holiday's, birthday's etc...Paige, like told me early on...is going to be better for this experience in her life. it used to be that families stuck together...not as much anymore, sadly. This stuff either makes or breaks you...my money's on God and Paige...And !!!!! You are a wonderful mom who will do and grow him to the best of your ability...just like I will ...it does scare me to death, and it does go by fast...too fast. I have to trust that God, who began a good work in , will bring it to fruition...I' m praying that for all of our kiddos...You too Lois.

Love to you all....truly. ..

e

From: Kellie Folkerts <folkangelymail (DOT) com>To: AutismBehaviorProbl emsyahoogroups (DOT) comSent: Saturday, March 28, 2009 9:53:20 PMSubject: Re: Why I can Never Die

This subject is so very hard. I just want to keep my sweet 8 year old boy... I know it isn't possible but the future is so uncertain and time goes so quickly that I will be dealing with this in what will seem like a blink of the eye. So many decisions, so much uncertain. Will be able live in a group home? I do feel we need to help him be as independent as possible while we are still here so he will not suddenly be without us and the place he lives. It is my hope that Paige will embrace and make him a part of the family she creates as an adult, so he has someone to go with on holidays and weekends. Will she look after him? It is such a big responsibility. I can see it going two ways, she adores him now and will continue to or she will resent him for all the time and attention he gets. No matter how equal you try to make it he will always need more, we will always have

restrictions on the things we do as a family because of what he can and cannot do. I look at her beautiful face and realize all she is losing out on. The big brother who should look after her, be her champion and check out her boyfriends (which would annoy her and please her at the same time). I know this will make her a better more understanding person in the long run and she is such a sweet girl I cannot imagine her not being there for . I think the best I can do now is help him become as independent as possible and make sure Paige doesn't feel left out. God will provide the right place at the right time for and he will keep Paige's heart open and loving where is concerned. God is in the present and while I feel I need to be aware and prepared for what is coming only God knows the answer and he will lead me to it when the time is right. Kellie

To: AutismBehaviorProbl emsyahoogroups (DOT) comSent: Saturday, March 28, 2009 9:28:28 PMSubject: Re: Why I can Never Die

Pat,

I have an older son but he has his own life with his family and Jake and I our really on our "own" with J. It scares me alot. Lois

Re: Why I can Never Die

[Guest guest]

I'm having mine right now...wine in a huge margarita glass I'm about ready to have a brownie too. Oh, my...

e

To: AutismBehaviorProblems Sent: Saturday, March 28, 2009 10:30:30 PMSubject: Re: Why I can Never Die

We all need those primary reinforcers once in awhile!! So glad Karac is had a good day. is doing great right now.. So many great social and communication gains that I am almost afraid to talk about them!! Last night he asked me for snuggle time!! That means he wants to get in my bed and tickle,talk and laugh right before he goes to bed. It was so cute and again the amazing eye contact. We also had peer play and he played TAG!! For years the girls and I have been trying to get him to understand and play but the concept of being IT and running away from someone who was IT just didn't click. We even took a 3by5 card with the word IT and glued it to a hat that whoever is IT wears. Yesterday we were at a Mcs playland and the girls started playing tag and he ran!! and when he was it he chased them and looked Abby (his favorite) right in the eye and said TAG YOUR IT!! She was so

excited and came up and said he looked me in the eyes!! We didn't even have the hat. These girls have been such a blessing, coming to our house or going places and trying to get to play along at least twice a month for over 2 years! He also went upstairs today to get dressed and stopped at the bottom step and said Mama I'll be right back, play ball? And then he came down and all his clothes matched! It has been a wonderful week and I know we will have many ups and downs but I am enjoying this completely! Kellie

From: "pkuenstler@ aol.com" <pkuenstleraol (DOT) com>To: AutismBehaviorProbl emsyahoogroups (DOT) comSent: Saturday, March 28, 2009 10:06:38 PMSubject: Re: Why I can Never Die

If Paige is anything like you, and my guess is that she is; she will embrace . I also think you have many years to help be independent, and God has been answering our prayers. There is strength in numbers and there are a bunch of us praying. Except for eating too many cookies; Karac had a good day today. Emil brought cookies for him and allowed him to eat too many of them. I only realized it after she left. No wonder he worked so hard for her today. LOL, and I had quit using primary reinforcers! Did have a good day? Pat K Re: Why I can Never Die

Pat,

I have an older son but he has his own life with his family and Jake and I our really on our "own" with J. It scares me alot. Lois

Re: Why I can Never Die

Live traffic, local info, maps, directions and more with the NEW MapQuest Toolbar. Get it now!

[Guest guest]

Well said,e, as usual. Pat K

Re: Why I can Never Die

Pat,

I have an older son but he has his own life with his family and Jake and I our really on our "own" with J. It scares me alot. Lois

Re: Why I can Never Die

Live traffic, local info, maps, directions and more with the NEW MapQuest Toolbar. Get it now!

[Guest guest]

Oh, Kellie, that is so awesome. is on the way! Yea for you and . God is answering our prayers. We all should have such hope. Pat K

Re: Why I can Never Die

Pat,

I have an older son but he has his own life with his family and Jake and I our really on our "own" with J. It scares me alot. Lois

Re: Why I can Never Die

Live traffic, local info, maps, directions and more with the NEW MapQuest Toolbar. Get it now!

Live traffic, local info, maps, directions and more with the NEW MapQuest Toolbar. Get it now!

[Guest guest]

Funny, is that what makes you "loopy" LOL. Hugs, Pat K

Re: Why I can Never Die

Pat,

I have an older son but he has his own life with his family and Jake and I our really on our "own" with J. It scares me alot. Lois

Re: Why I can Never Die

Live traffic, local info, maps, directions and more with the NEW MapQuest Toolbar. Get it now!

Live traffic, local info, maps, directions and more with the NEW MapQuest Toolbar. Get it now!

[Guest guest]

my hope would be that when the family members sitting in watch (i.e. the board

if you will), then their appointed guardians after the parents death (i.e.

siblings, others) would still maintain the standards set by the parents. The

monies from inheritence, etc. instead of going to individual names would go to

the *home*. My hubby & I will *hopefully* be able to leave behind monies as

well as a special needs trust. Not alot by any means - autism tends to be

expensive! And I know that a lot of other families are probably in our boat. I

know it's probably very tricky & complicated, but I have seen other homes that

are able to make it work, and I'm hoping with enough determination, intelligence

and perseverence, we could do it as well.

>

> WOW! That sounds great! But where will you get the money? And how do you know

the next generation will step up to the plate? I am thinking 30 years down the

road. Lois

> RE: Why I can Never Die

>

[Guest guest]

I so worry about this, hopefully we won't have to do guardianship over Dan when he is 18 but I am not closing my eyes to the fact that we may have to do this. If my hubby and I were to die and he is under guardianship according to our wills he will go to MN to be with his Aunt - they are very nice people but don't totally appreciate what all of us go through on a normal day much less one that has lots of changes in it.

My hope is that they will love him and try their best to duplicate what we have done here but you never ever know, hopefully we will have left enough money for him to be taken care of - that thought scares me everyday. Like you said we all spend a lot of money on Autism. Not just in therapies but in their special interests - Anybody want 67 Webkins that are no longer loved, they are in a special box but he has lost interest in them. He does this all the time and I indulge - should remember that it won't last but how do you not give in.

All we can do is pray that God knows our prediciment (sp) and that he will not let us down. He did not let us down by giving us these lovely children to bless our homes so I have to have faith that he knows what he is doing.

Sharon

Subject: Re: Why I can Never DieTo: AutismBehaviorProblems Date: Sunday, March 29, 2009, 9:38 AM

my hope would be that when the family members sitting in watch (i.e. the board if you will), then their appointed guardians after the parents death (i.e. siblings, others) would still maintain the standards set by the parents. The monies from inheritence, etc. instead of going to individual names would go to the *home*. My hubby & I will *hopefully* be able to leave behind monies as well as a special needs trust. Not alot by any means - autism tends to be expensive! And I know that a lot of other families are probably in our boat. I know it's probably very tricky & complicated, but I have seen other homes that are able to make it work, and I'm hoping with enough determination, intelligence and perseverence, we could do it as well.>> WOW! That

sounds great! But where will you get the money? And how do you know the next generation will step up to the plate? I am thinking 30 years down the road. Lois> RE: Why I can Never Die>

[Guest guest]

Yes, when I think about it; I have three very loving, kind, caring daughters who all love Karac and they have children (my grandchildren) who have done ABA with Karac and love him. I feel certain that they would see to it that Karac was taken care of.

In the mean time I will work and pray to help Karac as much as I can while I am here.

I love all your input. Love and blessings, Pat K

Re: Why I can Never Die

my hope would be that when the family members sitting in watch (i.e. the board if you will), then their appointed guardians after the parents death (i.e. siblings, others) would still maintain the standards set by the parents. The monies from inheritence, etc. instead of going to individual names would go to the *home*. My hubby & I will *hopefully* be able to leave behind monies as well as a special needs trust. Not alot by any means - autism tends to be expensive! And I know that a lot of other families are probably in our boat. I know it's probably very tricky & complicated, but I have seen other homes that are able to make it work, and I'm hoping with enough determination, intelligence and perseverence, we could do it as well.

>

> WOW! That sounds great! But where will you get the money? And how do you know the next generation will step up to the plate? I am thinking 30 years down the road. Lois

> RE: Why I can Never Die

>

Live traffic, local info, maps, directions and more with the NEW MapQuest Toolbar. Get it now!

[Guest guest]

Absolutely,Sharon, at this point God has supplied all Karac's and my needs and there is no reason to not believe that he will continue to do so. Love and prayers. Pat K

Re: Why I can Never Die

To: AutismBehaviorProblems

Date: Sunday, March 29, 2009, 9:38 AM

my hope would be that when the family members sitting in watch (i.e. the board if you will), then their appointed guardians after the parents death (i.e. siblings, others) would still maintain the standards set by the parents. The monies from inheritence, etc. instead of going to individual names would go to the *home*. My hubby & I will *hopefully* be able to leave behind monies as well as a special needs trust. Not alot by any means - autism tends to be expensive! And I know that a lot of other families are probably in our boat. I know it's probably very tricky & complicated, but I have seen other homes that are able to make it work, and I'm hoping with enough determination, intelligence and perseverence, we could do it as well.

>

> WOW! That sounds great! But where will you get the money? And how do you know the next generation will step up to the plate? I am thinking 30 years down the road. Lois

> RE: Why I can Never Die

>

Live traffic, local info, maps, directions and more with the NEW MapQuest Toolbar. Get it now!