Guest guest Posted March 29, 2009 Report Share Posted March 29, 2009 Setting up a trust when they are young is key...I need to do that. We need to do that --- Right now it seems that all our money is going to us and therapy...But even if we can put just a little away each month it will add up...there are wonderful financial people who can help families who have children with special needs...got to make sure they aren't quacks...with this economy, it's best to go through someone you know, or someone highly recommended......it's scary. e To: AutismBehaviorProblems Sent: Sunday, March 29, 2009 9:38:24 AMSubject: 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> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2009 Report Share Posted March 29, 2009 Sharon how is your little buddy today -- computer and all. e To: AutismBehaviorProblems Sent: Sunday, March 29, 2009 10:07:18 AMSubject: Re: Why I can Never Die 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: AutismBehaviorProbl emsyahoogroups (DOT) comDate: 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> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2009 Report Share Posted March 29, 2009 You are blessed! Having a lot of siblings will help in the future in so many ways - and lessen the *burden* for all (I hate to say it in that context - but it's like having another child in a lot of ways). We only have 1 other child - 10 years older & already living on his own. But, my sister has a lot of kids, and we've decided to make Nick, & the home created for his & others needs, a life long family obligation. And reward too. For all Nick's needs, I think he's already contributed more to mankind than a lot of NT - everyone who interacts with him ends up learning so much about themselves, and how to treat other people. He has a positive impact on everyone he meets. To: AutismBehaviorProblems From: pkuenstler@...Date: Sun, 29 Mar 2009 14:09:04 -0400Subject: Re: Why I can Never Die 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! Windows Live™ SkyDrive: Get 25 GB of free online storage. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 I agree e. I think of this too and it is scary. Stacie 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 Live™ SkyDrive: Get 25 GB of free online storage. Check it out. Feeling the pinch at the grocery store? Make dinner for $10 or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 Wow, this really does hit home. We have talked about this openly here and hopefully, this will not happen for a long, long time, but one can never be sure. We just have to put all our trust in God and that he will take care of our precious babies. I know that lexie, who is 13 said, mom, i hope this never happens but if it does, will be with me. I would never let him go somewhere unless I could not, without a doubt take care of him and I dont see that happening. Not at all. But, she is only 13,and as you can see a deep thinker. I do really believe though that she means what she says and no matter how hard it is, she would do this. What a burden though to have to think about your child having to do this. Now, with , she is HF, so she wont need as much. We do have our challenges with her, but I believe she will be ok and be able to lead a productive life, but at the same time, tht is not always the case either. Lexie said she would take both of them with her and that when she starts a life with someone, they would have to accept it, or if her life has already began with someone they would have to understand this upfront from the very beginning. I feel very sorry for her, because I know she feels left out and she has told me before that she does resent her siblings, especially , but too and I know this is natural. Kathy made sure I knew that a long time ago. Lexie was in 1st grade when was born and lauren was in preschool. So, when we started thnking he had Autism, well, I did, she was in 4th grade and his needs were so great and just kept getting greater. He takes so much of my time, but I do make sure I spend alot of time with her too alone. She so needs that. Because it does wear on her. Stacie 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>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 Feeling the pinch at the grocery store? Make dinner for $10 or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 Kellie, That is great. That is just so neat and I love hearing these stories from everyone and sharing my own, because so many people do not get it like we all do. It is great. You know what we did on Sat? I sent the pix of it. I met a mama of an autistic boy that is s age on a IL group for Autism and her and I have been talking. She is so nice. So, we met at Bouncetown and had a blast . The boys really didnt play together like we were hoping, but hey, it was their first time together and there was so much to do there. I am sure if we were at one of our houses it would be different you know because it would be a more confined spot. Anyhow, looking at next to her son, who is HF, is a peaunut. He looks like he is 2. It is so strange to see him up next to kids of his own age, even those with Autism and how much smaller and how much he looks so younger then they do ya know? Stacie 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: "pkuenstleraol" <pkuenstleraol>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! Feeling the pinch at the grocery store? Make dinner for $10 or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 Agreed Kellie! Completely. I am so lucky to have found this group. I love this group and you all have helped me in so many ways. Really you have. Gosh I wish we all lived closer to eachother. Kellie, didnt you say you come to IL sometimes? REally, the next time you come and if you are able, i would love to meet you and your family. That would be so neat. Stcie 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 From: Two Blessings <ljdjd1234>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 Feeling the pinch at the grocery store? Make dinner for $10 or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 That is true Pat!! I won't give up! I keep hanging in there! haha! Lois Re: Why I can Never Die Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 Lois, you are such an inspiration. I appreciate your emails.Karac had a good day. I hope you had a good day too. You aren't having as much aggression lately, are you? blessings, Pat K Re: Why I can Never Die That is true Pat!! I won't give up! I keep hanging in there! haha! Lois Re: Why I can Never Die Live traffic, local info, maps, directions and more with the NEW MapQuest Toolbar. Get it now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 I agree with everything you said e. And, I do this with Lexie as much as I can. Actually, since the kids are on Spring break this week, I am planning on taking her to Kohls so she can spend her gift card. She has been wanting to go so I am going to do this probably tomorrow, depending how is. He has been sick today. We are thinking he has been having seizures. He peed his pants today, and then went over to the other couch and said he was sick and had a far away look in his eyes and then threw up. Tonight he woke up and the same thing. Far away look sick etc. And, last week, I picked her up from school and her and I went to Dairy Queen together just the two of us and got sundaes and just sat outside in my car and ate them before going home. It was nice. Stacie Lexie is a wonderful caring little girl...I know you know, but to keep her spirits up (as I can tell she is indeed a deep thinker), help her to know that the burden will never be hers alone, that she will have options...and that she should never feel guilty if it gets to be too much for her... Also, take her out on Dates...take her shopping to get a special something, "just because" --- We do this with Lily...while we can't do much, we do something that sets Lily a part as a wonderful big sister. Her room is a haven, and we work real hard to make it and keep it that way...if she grows weary we let her know that it's OK to take a break...They are too young to bear the burden that Autism's is on some days...even 13 is too little... You are a good mom Stacie...and I know you do so much for your kids...it's just something I wanted to share...as sibling of kids who have autism, have a greater chance of having emotional, and or behavioral problems....What's good about your family, and we do this too, is we talk about it....we talk about things we know are true...we also do lots of reassuring...When Lily sees me stressed, and she does, I remind her that mommies are human, and that only God is perfect --- She's learned lots of good God lessons through all of this, and I see her growing even in the last few months. Hugs to you and your sweet family...Give Lexie a big hug from me e From: "hawkie6aol" <hawkie6aol>To: AutismBehaviorProblems Sent: Sunday, March 29, 2009 10:07:50 PMSubject: Re: Why I can Never Die Wow, this really does hit home. We have talked about this openly here and hopefully, this will not happen for a long, long time, but one can never be sure. We just have to put all our trust in God and that he will take care of our precious babies. I know that lexie, who is 13 said, mom, i hope this never happens but if it does, will be with me. I would never let him go somewhere unless I could not, without a doubt take care of him and I dont see that happening. Not at all. But, she is only 13,and as you can see a deep thinker. I do really believe though that she means what she says and no matter how hard it is, she would do this. What a burden though to have to think about your child having to do this. Now, with , she is HF, so she wont need as much. We do have our challenges with her, but I believe she will be ok and be able to lead a productive life, but at the same time, tht is not always the case either. Lexie said she would take both of them with her and that when she starts a life with someone, they would have to accept it, or if her life has already began with someone they would have to understand this upfront from the very beginning. I feel very sorry for her, because I know she feels left out and she has told me before that she does resent her siblings, especially , but too and I know this is natural. Kathy made sure I knew that a long time ago. Lexie was in 1st grade when was born and lauren was in preschool. So, when we started thnking he had Autism, well, I did, she was in 4th grade and his needs were so great and just kept getting greater. He takes so much of my time, but I do make sure I spend alot of time with her too alone. She so needs that. Because it does wear on her. Stacie In a message dated 3/28/2009 5:25:25 P.M. Hawaiian Standard Time, ljdjd1234yahoo (DOT) com writes: 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 Feeling the pinch at the grocery store? Make dinner for $10 or less. Messages in this topic (32) Reply (via web post) | Start a new topic .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 Better he should hit the wall than you, and at least he stops when you threaten to take the books away. Does he read a lot? Pat K Re: Why I can Never Die Pat, J has his days. Its not real bad. He has started to hit the walls when he gets mad about something. I tell him I am taking his books when he does that and he will stop. He never used to do that. Lois Re: Why I can Never Die Get there faster with the MapQuest Toolbar. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2009 Report Share Posted April 1, 2009 Ya! I know. Lexie loves those times. And we have our time on Tues and Wed nights with American Idol, hehe. We love it and Lex cait wait till she is 16 and can audition. My little guy has been really sick. He had a 104.1 temp and had a seizure today too. And he has croupe, and also flu symptoms. I have the vapor thing that you plug in and it works good for his breathing. Also, his Dr said to give him Robitussin DM and I did and that seems to be working to make him more comfortable. And also the IBprofin. It brought down his temp or we would of been off the toe Er with him. He has been in the Er for this at least 7 times in his life. And one time, he was hospitalized too. It all started with croupe too. Stacie Oh, poor little man!!! I hope he's feeling better. What a nice day you had with Lexie...just the little things like sitting with mommy alone, doing something "different" makes the world of difference with Lily. e From: "hawkie6aol (DOT) .com" <hawkie6aol>To: AutismBehaviorProblems Sent: Monday, March 30, 2009 10:30:28 PMSubject: Re: Why I can Never Die I agree with everything you said e. And, I do this with Lexie as much as I can. Actually, since the kids are on Spring break this week, I am planning on taking her to Kohls so she can spend her gift card. She has been wanting to go so I am going to do this probably tomorrow, depending how is. He has been sick today. We are thinking he has been having seizures. He peed his pants today, and then went over to the other couch and said he was sick and had a far away look in his eyes and then threw up. Tonight he woke up and the same thing. Far away look sick etc. And, last week, I picked her up from school and her and I went to Dairy Queen together just the two of us and got sundaes and just sat outside in my car and ate them before going home. It was nice. Stacie In a message dated 3/29/2009 6:08:29 P.M. Hawaiian Standard Time, ljdjd1234yahoo (DOT) com writes: Lexie is a wonderful caring little girl...I know you know, but to keep her spirits up (as I can tell she is indeed a deep thinker), help her to know that the burden will never be hers alone, that she will have options...and that she should never feel guilty if it gets to be too much for her... Also, take her out on Dates...take her shopping to get a special something, "just because" --- We do this with Lily...while we can't do much, we do something that sets Lily a part as a wonderful big sister. Her room is a haven, and we work real hard to make it and keep it that way...if she grows weary we let her know that it's OK to take a break...They are too young to bear the burden that Autism's is on some days...even 13 is too little... You are a good mom Stacie...and I know you do so much for your kids...it's just something I wanted to share...as sibling of kids who have autism, have a greater chance of having emotional, and or behavioral problems.... What's good about your family, and we do this too, is we talk about it....we talk about things we know are true...we also do lots of reassuring.. .When Lily sees me stressed, and she does, I remind her that mommies are human, and that only God is perfect --- She's learned lots of good God lessons through all of this, and I see her growing even in the last few months. Hugs to you and your sweet family...Give Lexie a big hug from me e From: "hawkie6aol (DOT) com" <hawkie6aol (DOT) com>To: AutismBehaviorProbl emsyahoogroups (DOT) comSent: Sunday, March 29, 2009 10:07:50 PMSubject: Re: Why I can Never Die Wow, this really does hit home. We have talked about this openly here and hopefully, this will not happen for a long, long time, but one can never be sure. We just have to put all our trust in God and that he will take care of our precious babies. I know that lexie, who is 13 said, mom, i hope this never happens but if it does, will be with me. I would never let him go somewhere unless I could not, without a doubt take care of him and I dont see that happening. Not at all. But, she is only 13,and as you can see a deep thinker. I do really believe though that she means what she says and no matter how hard it is, she would do this. What a burden though to have to think about your child having to do this. Now, with , she is HF, so she wont need as much. We do have our challenges with her, but I believe she will be ok and be able to lead a productive life, but at the same time, tht is not always the case either. Lexie said she would take both of them with her and that when she starts a life with someone, they would have to accept it, or if her life has already began with someone they would have to understand this upfront from the very beginning. I feel very sorry for her, because I know she feels left out and she has told me before that she does resent her siblings, especially , but too and I know this is natural. Kathy made sure I knew that a long time ago. Lexie was in 1st grade when was born and lauren was in preschool. So, when we started thnking he had Autism, well, I did, she was in 4th grade and his needs were so great and just kept getting greater. He takes so much of my time, but I do make sure I spend alot of time with her too alone. She so needs that. Because it does wear on her. Stacie In a message dated 3/28/2009 5:25:25 P.M. Hawaiian Standard Time, ljdjd1234yahoo (DOT) com writes: 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 Feeling the pinch at the grocery store? Make dinner for $10 or less. Messages in this topic (32) Reply (via web post) | Start a new topic .. Feeling the pinch at the grocery store? Make dinner for $10 or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2009 Report Share Posted April 1, 2009 Yes, He loves his books! He carries them around all the time. He loves the "Cat in the Hat". haha! Lois Re: Why I can Never Die Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2009 Report Share Posted April 1, 2009 Oh, sweet lady...I hope he's ok...wash your hands, as it might very well be the flu...it's the end of the season, but still here. YUCK. Lexie is a blessed little girl...Lily and I watch dancing with the stars... e To: AutismBehaviorProblems Sent: Tuesday, March 31, 2009 10:42:33 PMSubject: Re: Why I can Never Die Ya! I know. Lexie loves those times. And we have our time on Tues and Wed nights with American Idol, hehe. We love it and Lex cait wait till she is 16 and can audition. My little guy has been really sick. He had a 104.1 temp and had a seizure today too. And he has croupe, and also flu symptoms. I have the vapor thing that you plug in and it works good for his breathing. Also, his Dr said to give him Robitussin DM and I did and that seems to be working to make him more comfortable. And also the IBprofin. It brought down his temp or we would of been off the toe Er with him. He has been in the Er for this at least 7 times in his life. And one time, he was hospitalized too. It all started with croupe too. Stacie In a message dated 3/31/2009 7:25:14 A.M. Hawaiian Standard Time, ljdjd1234yahoo (DOT) com writes: Oh, poor little man!!! I hope he's feeling better. What a nice day you had with Lexie...just the little things like sitting with mommy alone, doing something "different" makes the world of difference with Lily. e From: "hawkie6aol (DOT) .com" <hawkie6aol (DOT) com>To: AutismBehaviorProbl emsyahoogroups (DOT) comSent: Monday, March 30, 2009 10:30:28 PMSubject: Re: Why I can Never Die I agree with everything you said e. And, I do this with Lexie as much as I can. Actually, since the kids are on Spring break this week, I am planning on taking her to Kohls so she can spend her gift card. She has been wanting to go so I am going to do this probably tomorrow, depending how is. He has been sick today. We are thinking he has been having seizures. He peed his pants today, and then went over to the other couch and said he was sick and had a far away look in his eyes and then threw up. Tonight he woke up and the same thing. Far away look sick etc. And, last week, I picked her up from school and her and I went to Dairy Queen together just the two of us and got sundaes and just sat outside in my car and ate them before going home. It was nice. Stacie In a message dated 3/29/2009 6:08:29 P.M. Hawaiian Standard Time, ljdjd1234yahoo (DOT) com writes: Lexie is a wonderful caring little girl...I know you know, but to keep her spirits up (as I can tell she is indeed a deep thinker), help her to know that the burden will never be hers alone, that she will have options...and that she should never feel guilty if it gets to be too much for her... Also, take her out on Dates...take her shopping to get a special something, "just because" --- We do this with Lily...while we can't do much, we do something that sets Lily a part as a wonderful big sister. Her room is a haven, and we work real hard to make it and keep it that way...if she grows weary we let her know that it's OK to take a break...They are too young to bear the burden that Autism's is on some days...even 13 is too little... You are a good mom Stacie...and I know you do so much for your kids...it's just something I wanted to share...as sibling of kids who have autism, have a greater chance of having emotional, and or behavioral problems.... What's good about your family, and we do this too, is we talk about it....we talk about things we know are true...we also do lots of reassuring.. .When Lily sees me stressed, and she does, I remind her that mommies are human, and that only God is perfect --- She's learned lots of good God lessons through all of this, and I see her growing even in the last few months. Hugs to you and your sweet family...Give Lexie a big hug from me e From: "hawkie6aol (DOT) com" <hawkie6aol (DOT) com>To: AutismBehaviorProbl emsyahoogroups (DOT) comSent: Sunday, March 29, 2009 10:07:50 PMSubject: Re: Why I can Never Die Wow, this really does hit home. We have talked about this openly here and hopefully, this will not happen for a long, long time, but one can never be sure. We just have to put all our trust in God and that he will take care of our precious babies. I know that lexie, who is 13 said, mom, i hope this never happens but if it does, will be with me. I would never let him go somewhere unless I could not, without a doubt take care of him and I dont see that happening. Not at all. But, she is only 13,and as you can see a deep thinker. I do really believe though that she means what she says and no matter how hard it is, she would do this. What a burden though to have to think about your child having to do this. Now, with , she is HF, so she wont need as much. We do have our challenges with her, but I believe she will be ok and be able to lead a productive life, but at the same time, tht is not always the case either. Lexie said she would take both of them with her and that when she starts a life with someone, they would have to accept it, or if her life has already began with someone they would have to understand this upfront from the very beginning. I feel very sorry for her, because I know she feels left out and she has told me before that she does resent her siblings, especially , but too and I know this is natural. Kathy made sure I knew that a long time ago. Lexie was in 1st grade when was born and lauren was in preschool. So, when we started thnking he had Autism, well, I did, she was in 4th grade and his needs were so great and just kept getting greater. He takes so much of my time, but I do make sure I spend alot of time with her too alone. She so needs that. Because it does wear on her. Stacie In a message dated 3/28/2009 5:25:25 P.M. Hawaiian Standard Time, ljdjd1234yahoo (DOT) com writes: 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 Feeling the pinch at the grocery store? Make dinner for $10 or less. Messages in this topic (32) Reply (via web post) | Start a new topic .. Feeling the pinch at the grocery store? Make dinner for $10 or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 J had a good day. he is waiting for it to get warm out. He does so much better in warm weather! My days are wild all the time. I work at a high school with so called "regular" kids! haha! I say at least JJ has an excuse for his behaviour! haha! Lois Re: Why I can Never Die Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2009 Report Share Posted April 6, 2009 Rhonda, you sound very foresighted; good for you. Yes, I am blessed and it is a blessing to have many to share in both the burden and the blessing. 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 t hat 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! Windows Liveâ„¢ SkyDrive: Get 25 GB of free online storage. Check it out. Get the scoop on the live music scene in your area and hit a show tonight. Check out TourTracker.com! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 I was wondering why I am just getting posts that we talked about a while ago. Stacie Oh, man...I just now got this, and you sent it on the 29th???? I have emails I just now recieved from the 29th through the 5th This is great Kellie...I would have mentioned it the other evening e From: "pkuenstleraol" <pkuenstleraol>To: AutismBehaviorProblems Sent: Sunday, March 29, 2009 8:32:26 AMSubject: Re: Why I can Never Die 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! Feeling the pinch at the grocery store? Make dinner for $10 or less. Quote Link to comment Share on other sites More sharing options...
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