Guest guest Posted October 18, 2011 Report Share Posted October 18, 2011 OMG Holly - that was so beautifully worded! Thank you! I have been struggling with the failure thing lately so this e-mail came at such a perfect time. Everything you just said has reminded me how special this group is because you truly do understand me!!!!!  Thanks again!!  Ali ________________________________ To: Sent: Tuesday, October 18, 2011 9:58:38 AM Subject: This group  One of the things that I love about this group is that we can talk and share how it really is in our lives. The good, the bad, and the ugly. The wonderful times when our kids have accomplished those tiny milestones that have taken years to accomplish, and the days when we are ready to scream at yet another smeared poopy wall art master piece. The last couple of days I know we have touched on feeling like the failed Mommy. I know I feel that pretty much once a day for some reason or another. I always wante to be the cookie baking, sit down with my children doing homework, running to baseball, etc type of mom. But honestly, I can barely get dinner on the table most nights and I dont work full time. I often time feel like such a fraud. Everyone looks at us like we are some kids of special person doing the unimaginable. They give us such praise and glory. For being a mom to a special needs child. Really? We are just taking care of our children the best we can. I know there are many people who dont take care of their kids. Special needs kids included. I dont feel special. I dont feel better than everyone else. What I feel is tired. What I feel is that just once I would like to spend the day with my typical child doing the things other families are doing, enjoying her moments without a the challenge of autism. What I would like is to have the freedom to do the little things, like go to the store, go to dinner, go to the mall, go to a sports event, without the challenge of autism. What I would like is to be able to connect with my son. Have a conversation with him, watch him play with other children, see him learn to drive, fall in love, and go off to college. What I would like is for my friends like Desi to be able to have their kids go to a soccer game and not have to worry about a bounce house getting in the way of what could have been a great soccer night for her child. No where else does anyone get our life. No where else does anyone get the stress of our days. The love for our children and the pain of our version of Autism. I do not know what I would do without this group. You guys have been my sanity for so long! Just wanted to each to know that I think you are super Mom's and I dont say that because you have a child with special needs, but because I know what you do each day and I know you do it with love and most often with little sleep! Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2011 Report Share Posted October 18, 2011 Holly, I couldn't have said any of this any better!! <3 Liz > ** > > > One of the things that I love about this group is that we can talk and > share how it really is in our lives. The good, the bad, and the ugly. The > wonderful times when our kids have accomplished those tiny milestones that > have taken years to accomplish, and the days when we are ready to scream at > yet another smeared poopy wall art master piece. > > The last couple of days I know we have touched on feeling like the failed > Mommy. I know I feel that pretty much once a day for some reason or another. > I always wante to be the cookie baking, sit down with my children doing > homework, running to baseball, etc type of mom. But honestly, I can barely > get dinner on the table most nights and I dont work full time. > > I often time feel like such a fraud. Everyone looks at us like we are some > kids of special person doing the unimaginable. They give us such praise and > glory. For being a mom to a special needs child. Really? We are just taking > care of our children the best we can. I know there are many people who dont > take care of their kids. Special needs kids included. I dont feel special. I > dont feel better than everyone else. What I feel is tired. What I feel is > that just once I would like to spend the day with my typical child doing the > things other families are doing, enjoying her moments without a the > challenge of autism. What I would like is to have the freedom to do the > little things, like go to the store, go to dinner, go to the mall, go to a > sports event, without the challenge of autism. What I would like is to be > able to connect with my son. Have a conversation with him, watch him play > with other children, see him learn to drive, fall in love, and go off to > college. What I would like is for my friends like Desi to be able to have > their kids go to a soccer game and not have to worry about a bounce house > getting in the way of what could have been a great soccer night for her > child. > > No where else does anyone get our life. No where else does anyone get the > stress of our days. The love for our children and the pain of our version of > Autism. I do not know what I would do without this group. You guys have been > my sanity for so long! Just wanted to each to know that I think you are > super Mom's and I dont say that because you have a child with special needs, > but because I know what you do each day and I know you do it with love and > most often with little sleep! > > Holly > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2011 Report Share Posted October 18, 2011 Amen to everything Holly said.... We are inadequate on our own, and dependent on each other for support. That is the nature of human beings, going through life, facing our own unique challenges. It's nice to be able to share with someone who can relate to our own struggles. That is what makes each one of you heroes. Yes, I said heroes. We learned in the 9/11 attacks who true heroes are. They are ordinary people doing their jobs under extraordinary circumstances. Like the firemen who raced up a burning skyscraper, who knew they faced an impossible task. You are no different than them. You encourage each other against overwhelming odds. We pour out our lives for our precious children. That is enough to be known as a hero.  Shane Avery father of , age 11 ________________________________ To: Sent: Tuesday, October 18, 2011 12:58 PM Subject: This group  One of the things that I love about this group is that we can talk and share how it really is in our lives. The good, the bad, and the ugly. The wonderful times when our kids have accomplished those tiny milestones that have taken years to accomplish, and the days when we are ready to scream at yet another smeared poopy wall art master piece. The last couple of days I know we have touched on feeling like the failed Mommy. I know I feel that pretty much once a day for some reason or another. I always wante to be the cookie baking, sit down with my children doing homework, running to baseball, etc type of mom. But honestly, I can barely get dinner on the table most nights and I dont work full time. I often time feel like such a fraud. Everyone looks at us like we are some kids of special person doing the unimaginable. They give us such praise and glory. For being a mom to a special needs child. Really? We are just taking care of our children the best we can. I know there are many people who dont take care of their kids. Special needs kids included. I dont feel special. I dont feel better than everyone else. What I feel is tired. What I feel is that just once I would like to spend the day with my typical child doing the things other families are doing, enjoying her moments without a the challenge of autism. What I would like is to have the freedom to do the little things, like go to the store, go to dinner, go to the mall, go to a sports event, without the challenge of autism. What I would like is to be able to connect with my son. Have a conversation with him, watch him play with other children, see him learn to drive, fall in love, and go off to college. What I would like is for my friends like Desi to be able to have their kids go to a soccer game and not have to worry about a bounce house getting in the way of what could have been a great soccer night for her child. No where else does anyone get our life. No where else does anyone get the stress of our days. The love for our children and the pain of our version of Autism. I do not know what I would do without this group. You guys have been my sanity for so long! Just wanted to each to know that I think you are super Mom's and I dont say that because you have a child with special needs, but because I know what you do each day and I know you do it with love and most often with little sleep! Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2011 Report Share Posted October 18, 2011 I agree. My family and friends really have no idea how much stress I absorb daily. And having this site I read the posts and say yup I know, yup I. Totally understand. I would love to have a conversation with my daughter, love to have the kids on the street come ask her to play, I would love to go to bed like so called normal people without checking the 4 locks on the back and front door so she dsnt go missing again at 3am! I don't feel like I'm doing something super or feel like I should be praised. I am super super jealous of the moms and dads who can sit down at a water park or pool or beach and let their kids run around. So thanks for making me feel part of something that I feel is normal. Betsy > > One of the things that I love about this group is that we can talk and share how it really is in our lives. The good, the bad, and the ugly. The wonderful times when our kids have accomplished those tiny milestones that have taken years to accomplish, and the days when we are ready to scream at yet another smeared poopy wall art master piece. > > The last couple of days I know we have touched on feeling like the failed Mommy. I know I feel that pretty much once a day for some reason or another. I always wante to be the cookie baking, sit down with my children doing homework, running to baseball, etc type of mom. But honestly, I can barely get dinner on the table most nights and I dont work full time. > > I often time feel like such a fraud. Everyone looks at us like we are some kids of special person doing the unimaginable. They give us such praise and glory. For being a mom to a special needs child. Really? We are just taking care of our children the best we can. I know there are many people who dont take care of their kids. Special needs kids included. I dont feel special. I dont feel better than everyone else. What I feel is tired. What I feel is that just once I would like to spend the day with my typical child doing the things other families are doing, enjoying her moments without a the challenge of autism. What I would like is to have the freedom to do the little things, like go to the store, go to dinner, go to the mall, go to a sports event, without the challenge of autism. What I would like is to be able to connect with my son. Have a conversation with him, watch him play with other children, see him learn to drive, fall in love, and go off to college. What I would like is for my friends like Desi to be able to have their kids go to a soccer game and not have to worry about a bounce house getting in the way of what could have been a great soccer night for her child. > > No where else does anyone get our life. No where else does anyone get the stress of our days. The love for our children and the pain of our version of Autism. I do not know what I would do without this group. You guys have been my sanity for so long! Just wanted to each to know that I think you are super Mom's and I dont say that because you have a child with special needs, but because I know what you do each day and I know you do it with love and most often with little sleep! > > Holly > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2011 Report Share Posted October 18, 2011 Holly, what a great post. I think for me, the hard part is feeling so separate from my peers. How can people understand what life is like with 3 kids with autism?? To be able to eat a family dinner without having to tell an 8-year-old to take bites. To have " after-dinner time " . My gosh, by the time finishes dinner, it's time for baths and bed! There's no in-between time. If I hang out with the other kids while 's at the table, doesn't eat. Mornings are awful... won't get dressed, take his meds, eat, without extreme micro-managing. I'm talking, every pill. does not have T-21, he has Asperger's and severe ADHD. But is, as far as self-care goes, 100 times easier than . I so understand what you mean about longing for normalcy. I feel that too. Sometimes I just wish DH, at least, was normal (he's pretty Aspie). That he could model a male for whom people's feelings are more important than rules, that he could SHOW our kids how much he enjoys them. That he could enjoy them. I wish didn't have so much trouble focusing, doing homework, eating, taking care of himself. I wish could talk. Or want to talk. I wish would understand that pranks and practical jokes don't help develop friendships. I wish I wasn't so tired and drained all the time. That I had time to grow friendships, and that I wasn't such a bore. That I could have an animated conversation about football or current events. I usually am in a fog with that stuff. I love my kids. Man, if I didn't enjoy them so much, life would be pretty miserable. I really need to take better care of myself, I guess. Sent from my iPhone > One of the things that I love about this group is that we can talk and share how it really is in our lives. The good, the bad, and the ugly. The wonderful times when our kids have accomplished those tiny milestones that have taken years to accomplish, and the days when we are ready to scream at yet another smeared poopy wall art master piece. > > The last couple of days I know we have touched on feeling like the failed Mommy. I know I feel that pretty much once a day for some reason or another. I always wante to be the cookie baking, sit down with my children doing homework, running to baseball, etc type of mom. But honestly, I can barely get dinner on the table most nights and I dont work full time. > > I often time feel like such a fraud. Everyone looks at us like we are some kids of special person doing the unimaginable. They give us such praise and glory. For being a mom to a special needs child. Really? We are just taking care of our children the best we can. I know there are many people who dont take care of their kids. Special needs kids included. I dont feel special. I dont feel better than everyone else. What I feel is tired. What I feel is that just once I would like to spend the day with my typical child doing the things other families are doing, enjoying her moments without a the challenge of autism. What I would like is to have the freedom to do the little things, like go to the store, go to dinner, go to the mall, go to a sports event, without the challenge of autism. What I would like is to be able to connect with my son. Have a conversation with him, watch him play with other children, see him learn to drive, fall in love, and go off to college. What I would like is for my friends like Desi to be able to have their kids go to a soccer game and not have to worry about a bounce house getting in the way of what could have been a great soccer night for her child. > > No where else does anyone get our life. No where else does anyone get the stress of our days. The love for our children and the pain of our version of Autism. I do not know what I would do without this group. You guys have been my sanity for so long! Just wanted to each to know that I think you are super Mom's and I dont say that because you have a child with special needs, but because I know what you do each day and I know you do it with love and most often with little sleep! > > Holly > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2011 Report Share Posted October 18, 2011 I think we all have to do a better job of taking care of ourselves. I do my best now to not feel bad about the time I have at home by myself. I am trying to do a better job of asking for what I need instead of expecting it to come to me. I am also doing a better job of seeking out the things I want to do. This year I took on a more active role volunteering for Special Olympics and Project UNIFY. I love it. I get to work with our local schools and I get to work with both typical kids and the athletes. It helps that my daughter Mia (typical) is active in the program as well. She has become a pretty strong advocate and so SO has become our family focus. At least there we feel like a normal family. Hugs to all! Holly Re: This group Holly, what a great post. I think for me, the hard part is feeling so separate from my peers. How can people understand what life is like with 3 kids with autism?? To be able to eat a family dinner without having to tell an 8-year-old to take bites. To have " after-dinner time " . My gosh, by the time finishes dinner, it's time for baths and bed! There's no in-between time. If I hang out with the other kids while 's at the table, doesn't eat. Mornings are awful... won't get dressed, take his meds, eat, without extreme micro-managing. I'm talking, every pill. does not have T-21, he has Asperger's and severe ADHD. But is, as far as self-care goes, 100 times easier than . I so understand what you mean about longing for normalcy. I feel that too. Sometimes I just wish DH, at least, was normal (he's pretty Aspie). That he could model a male for whom people's feelings are more important than rules, that he could SHOW our kids how much he enjoys them. That he could enjoy them. I wish didn't have so much trouble focusing, doing homework, eating, taking care of himself. I wish could talk. Or want to talk. I wish would understand that pranks and practical jokes don't help develop friendships. I wish I wasn't so tired and drained all the time. That I had time to grow friendships, and that I wasn't such a bore. That I could have an animated conversation about football or current events. I usually am in a fog with that stuff. I love my kids. Man, if I didn't enjoy them so much, life would be pretty miserable. I really need to take better care of myself, I guess. Sent from my iPhone > One of the things that I love about this group is that we can talk and share how it really is in our lives. The good, the bad, and the ugly. The wonderful times when our kids have accomplished those tiny milestones that have taken years to accomplish, and the days when we are ready to scream at yet another smeared poopy wall art master piece. > > The last couple of days I know we have touched on feeling like the failed Mommy. I know I feel that pretty much once a day for some reason or another. I always wante to be the cookie baking, sit down with my children doing homework, running to baseball, etc type of mom. But honestly, I can barely get dinner on the table most nights and I dont work full time. > > I often time feel like such a fraud. Everyone looks at us like we are some kids of special person doing the unimaginable. They give us such praise and glory. For being a mom to a special needs child. Really? We are just taking care of our children the best we can. I know there are many people who dont take care of their kids. Special needs kids included. I dont feel special. I dont feel better than everyone else. What I feel is tired. What I feel is that just once I would like to spend the day with my typical child doing the things other families are doing, enjoying her moments without a the challenge of autism. What I would like is to have the freedom to do the little things, like go to the store, go to dinner, go to the mall, go to a sports event, without the challenge of autism. What I would like is to be able to connect with my son. Have a conversation with him, watch him play with other children, see him learn to drive, fall in love, and go off to college. What I would like is for my friends like Desi to be able to have their kids go to a soccer game and not have to worry about a bounce house getting in the way of what could have been a great soccer night for her child. > > No where else does anyone get our life. No where else does anyone get the stress of our days. The love for our children and the pain of our version of Autism. I do not know what I would do without this group. You guys have been my sanity for so long! Just wanted to each to know that I think you are super Mom's and I dont say that because you have a child with special needs, but because I know what you do each day and I know you do it with love and most often with little sleep! > > Holly > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2011 Report Share Posted October 18, 2011 OK now I am crying all over again after reading this email and...especially since as each day goes by since this past Sunday, I want to surrender to the desire to cower and stay home again forever...Oh boy do I know EXACTLY how you feel. The last several days my heart has hurt so much it is physically aching...no I am not having a heart attack(!) but such a gut-wrenching disappointment in the lack of genuine human concern and compassion for our family that hurts in a new, deeper part of me that I cannot begin to comprehend. So much of it is because we have been hit over and over and over again with the cruelty of the world, but especially I think, because of the indifference of these other parents and coaches in what I had created and hoped would be a " safe place " for parents and children like myself- a soccer league of other " special families " who are SUPPOSED TO GET IT! I seriously have never felt as alone in my adult life as I do today. I would give everything I have just to have one friend here that I could go to lunch with and pour my heart out to without guilt or worrying that they will judge me for expressing my pain or worrying that I will overburden them-or especially who will turn around and demean me knowing full well how much my family has suffered over the past year. Why would anyone want to intentionally cause more pain to a family like ours? I will never, ever understand this... BUT alas there comes that one moment in the day when you see the triumph of the human spirit that you have as a parent has enabled... My daughter , 16, who has battled the " r-word " for years in her school, and most recently Androgenic Alopecia, two concussions, and a double bout with strep-wanted to try out for the Drum Major of her school marching band in a way to pay back her private school for the $19,000 tuition waiver she receives every year to go there. We had a serious discussion about it because we know the additional stressors it would bring...and after this, I supported her auditioning with my whole heart. During the audition interview, they sent one of the judges out to discuss my single parenthood and my special needs child...it was a red flag to me...Though asked me to stay away as I'd make her more nervous, several other parents watched the auditions and were excited for her as they felt she had the best shot at it! She had won every drill down and kept the best beat they said! was promised a " twin drum major role " along with a young man for school marching band...though beyond anyone's doubt to this day, she truly is clearly the better skilled and harder working one...however, slowly but surely her role diminished to assistant drum major and that was well before her recent health concerns that kept her out of school for a couple of weeks this last quarter. Having a sibling with special needs really teaches a child resilience and perseverance, because despite her health challenges, this past Saturday night was her debut as a drum major in their first official competition... Adjudicators audio record their comments. Though the other drum major never asked to hear recording, was persistent despite her directors' reluctance to share to them- " The drum major in the back is clearly the better skilled one with her sense of tempo and conducting beat pattern...you may want to consider moving her up front... " Our family has dealt with an inordinate amount of undeniable discrimination and dismissal because we are not considered what the world perceives as whole... If it were not for this group, I have no idea how I would be coping right now... I thank you from the bottom of my aching heart. Desi ________________________________ To: Sent: Tuesday, October 18, 2011 6:58 AM Subject: This group  One of the things that I love about this group is that we can talk and share how it really is in our lives. The good, the bad, and the ugly. The wonderful times when our kids have accomplished those tiny milestones that have taken years to accomplish, and the days when we are ready to scream at yet another smeared poopy wall art master piece. The last couple of days I know we have touched on feeling like the failed Mommy. I know I feel that pretty much once a day for some reason or another. I always wante to be the cookie baking, sit down with my children doing homework, running to baseball, etc type of mom. But honestly, I can barely get dinner on the table most nights and I dont work full time. I often time feel like such a fraud. Everyone looks at us like we are some kids of special person doing the unimaginable. They give us such praise and glory. For being a mom to a special needs child. Really? We are just taking care of our children the best we can. I know there are many people who dont take care of their kids. Special needs kids included. I dont feel special. I dont feel better than everyone else. What I feel is tired. What I feel is that just once I would like to spend the day with my typical child doing the things other families are doing, enjoying her moments without a the challenge of autism. What I would like is to have the freedom to do the little things, like go to the store, go to dinner, go to the mall, go to a sports event, without the challenge of autism. What I would like is to be able to connect with my son. Have a conversation with him, watch him play with other children, see him learn to drive, fall in love, and go off to college. What I would like is for my friends like Desi to be able to have their kids go to a soccer game and not have to worry about a bounce house getting in the way of what could have been a great soccer night for her child. No where else does anyone get our life. No where else does anyone get the stress of our days. The love for our children and the pain of our version of Autism. I do not know what I would do without this group. You guys have been my sanity for so long! Just wanted to each to know that I think you are super Mom's and I dont say that because you have a child with special needs, but because I know what you do each day and I know you do it with love and most often with little sleep! Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2011 Report Share Posted October 18, 2011 Forgive me Desi, but for a better way to ask this... why is had to endure the " r " word at school? I don't know the history of your daughter, more familiar with Aubrey though since coming on this list a few years ago and not being (unfortunately) able to read every post. My heart pours out to you! Please don't feel alone as we all struggle with the same or similar feelings! Hugs! Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2011 Report Share Posted October 18, 2011 Desi, We moved to idaho last June. One Mia's (my typical) first day of school at her new school, a teacher said retard twice in his class. Mia bravely raised her hand and called him out. What a way to be welcomed to her new school. She was so mad at the end of the day. We called Special Olympics and the school. Together we researched the r-word.org campaign and in March, we held a assembly and two kids (Mia and a high school Freshman) gave speeches about the use of the R-word. Since then, we have spear headed Project UNIFY in our region. I am now the Director of our region. We are now in 4 schools in our district. That would be both middle schools and both high schools. We are also in 1 high school in our rival district. Our goal is to have 5 kids from each school representing their schools in our regional Project UNIFY group. From there, the kids can work within their schools to form clubs, to volunteer in Special Olympics, and to promote the r-word campaign. At first, Mia took a lot of heat and heard the word more than she bargained for. I had warned her this would happen. Today, she is seeing her friends and others stand up and say " hey, that's not cool. " She finally feels like she is making a difference and it is making her even more vocal and passionate about Special Olympics and the r-word campaign. It has also helped her realize just how much her brother will need her as he grows older. Mia is 14. It is unfortunate that our typical kids have to endure some of this as well. One thing I know is that it does make them strong kids once they find their voice. I do know that you fight a different culture and that has to be hard. I too feel your pain of wanting to have just one friend to go to lunch with who gets it. Just one person to pick up the phone and spill my guts too that understands. I think that is why we all come here so much. To reach out to those who get it. Where else can I say that my son licks the toilets and people not be grossed out? LOL! May tomorrow be a better day, may you feel stronger and more at rest. I know a good cry always helps pick me up. If I dont have at least one a month I am out of sorts! It is definitely part of my routine! Hugs! Holly This group One of the things that I love about this group is that we can talk and share how it really is in our lives. The good, the bad, and the ugly. The wonderful times when our kids have accomplished those tiny milestones that have taken years to accomplish, and the days when we are ready to scream at yet another smeared poopy wall art master piece. The last couple of days I know we have touched on feeling like the failed Mommy. I know I feel that pretty much once a day for some reason or another. I always wante to be the cookie baking, sit down with my children doing homework, running to baseball, etc type of mom. But honestly, I can barely get dinner on the table most nights and I dont work full time. I often time feel like such a fraud. Everyone looks at us like we are some kids of special person doing the unimaginable. They give us such praise and glory. For being a mom to a special needs child. Really? We are just taking care of our children the best we can. I know there are many people who dont take care of their kids. Special needs kids included. I dont feel special. I dont feel better than everyone else. What I feel is tired. What I feel is that just once I would like to spend the day with my typical child doing the things other families are doing, enjoying her moments without a the challenge of autism. What I would like is to have the freedom to do the little things, like go to the store, go to dinner, go to the mall, go to a sports event, without the challenge of autism. What I would like is to be able to connect with my son. Have a conversation with him, watch him play with other children, see him learn to drive, fall in love, and go off to college. What I would like is for my friends like Desi to be able to have their kids go to a soccer game and not have to worry about a bounce house getting in the way of what could have been a great soccer night for her child. No where else does anyone get our life. No where else does anyone get the stress of our days. The love for our children and the pain of our version of Autism. I do not know what I would do without this group. You guys have been my sanity for so long! Just wanted to each to know that I think you are super Mom's and I dont say that because you have a child with special needs, but because I know what you do each day and I know you do it with love and most often with little sleep! Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2011 Report Share Posted October 18, 2011 <<<<<hugs>>>>, Desi, huge heartfelt ones to all three of you. How awful that should be dealing with such bull. Ugh! And I sure wish I could take you out for a cuppa coffee and talk! Sent from my iPhone > OK now I am crying all over again after reading this email and...especially since as each day goes by since this past Sunday, I want to surrender to the desire to cower and stay home again forever...Oh boy do I know EXACTLY how you feel. > > The last several days my heart has hurt so much it is physically aching...no I am not having a heart attack(!) but > such a gut-wrenching disappointment in the lack of genuine human concern and compassion for our family that > hurts in a new, deeper part of me that I cannot begin to comprehend. So much of it is because we have been hit over and over and over again with the cruelty of the world, but especially I think, because of the indifference of these other parents and coaches in what I had created and hoped would be a " safe place " for parents and children like myself- a soccer league of other " special families " who are SUPPOSED TO GET IT! > > I seriously have never felt as alone in my adult life as I do today. I would give everything I have just to have one friend here that I could go to lunch with and pour my heart out to without guilt or worrying that they will judge me for expressing my pain or worrying that I will overburden them-or especially who will turn around and demean me > knowing full well how much my family has suffered over the past year. Why would anyone want to intentionally cause more pain to a family like ours? I will never, ever understand this... > > BUT alas there comes that one moment in the day when you see the triumph of the human spirit that you have > as a parent has enabled... > > My daughter , 16, who has battled the " r-word " for years in her school, and most recently Androgenic Alopecia, two concussions, and a double bout with strep-wanted to try out for the Drum Major of her school marching band in a way to pay back her private school for the $19,000 tuition waiver she receives every year to go there. > > We had a serious discussion about it because we know the additional stressors it would bring...and after this, I supported her auditioning with my whole heart. During the audition interview, they sent one of the judges out to discuss my single parenthood and my special needs child...it was a red flag to me...Though asked me to stay away as I'd make her more nervous, several other parents watched the auditions and were excited for her as they felt she had the best shot at it! She had won every drill down and kept the best beat they said! > > was promised a " twin drum major role " along with a young man for school marching band...though beyond anyone's doubt to this day, she truly is clearly the better skilled and harder working one...however, slowly but surely her role diminished to assistant drum major and that was well before her recent health concerns that kept her out of school for a couple of weeks this last quarter. > > Having a sibling with special needs really teaches a child resilience and perseverance, because despite her health challenges, this past Saturday night was her debut as a drum major in their first official competition... > > Adjudicators audio record their comments. Though the other drum major never asked to hear recording, was persistent despite her directors' reluctance to share to them- > > " The drum major in the back is clearly the better skilled one with her sense of tempo and conducting beat pattern...you may want to consider moving her up front... " > > Our family has dealt with an inordinate amount of undeniable discrimination and dismissal because we are not considered what the world perceives as whole... > > If it were not for this group, I have no idea how I would be coping right now... > > I thank you from the bottom of my aching heart. > > Desi > > ________________________________ > > To: > Sent: Tuesday, October 18, 2011 6:58 AM > Subject: This group > > > One of the things that I love about this group is that we can talk and share how it really is in our lives. The good, the bad, and the ugly. The wonderful times when our kids have accomplished those tiny milestones that have taken years to accomplish, and the days when we are ready to scream at yet another smeared poopy wall art master piece. > > The last couple of days I know we have touched on feeling like the failed Mommy. I know I feel that pretty much once a day for some reason or another. I always wante to be the cookie baking, sit down with my children doing homework, running to baseball, etc type of mom. But honestly, I can barely get dinner on the table most nights and I dont work full time. > > I often time feel like such a fraud. Everyone looks at us like we are some kids of special person doing the unimaginable. They give us such praise and glory. For being a mom to a special needs child. Really? We are just taking care of our children the best we can. I know there are many people who dont take care of their kids. Special needs kids included. I dont feel special. I dont feel better than everyone else. What I feel is tired. What I feel is that just once I would like to spend the day with my typical child doing the things other families are doing, enjoying her moments without a the challenge of autism. What I would like is to have the freedom to do the little things, like go to the store, go to dinner, go to the mall, go to a sports event, without the challenge of autism. What I would like is to be able to connect with my son. Have a conversation with him, watch him play with other children, see him learn to drive, fall in love, > and go off to college. What I would like is for my friends like Desi to be able to have their kids go to a soccer game and not have to worry about a bounce house getting in the way of what could have been a great soccer night for her child. > > No where else does anyone get our life. No where else does anyone get the stress of our days. The love for our children and the pain of our version of Autism. I do not know what I would do without this group. You guys have been my sanity for so long! Just wanted to each to know that I think you are super Mom's and I dont say that because you have a child with special needs, but because I know what you do each day and I know you do it with love and most often with little sleep! > > Holly > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2011 Report Share Posted October 18, 2011 Desi: MY question besides why the 'r' word is WTFF are you going to do with the school band people - now that there is a recording stating that she is the better of the two. Is a senior? And this is a CHRISITIAN school?? Excuse me...... > ** > > > Forgive me Desi, but for a better way to ask this... why is had to > endure the " r " word at school? I don't know the history of your daughter, > more familiar with Aubrey though since coming on this list a few years ago > and not being (unfortunately) able to read every post. > > My heart pours out to you! Please don't feel alone as we all struggle > with the same or similar feelings! > > Hugs! > > Heidi > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2011 Report Share Posted October 18, 2011 Holly,   I had to giggle a little because CJ likes to stick his head in the toilet and on occasion lick it as well.  aaaah Good Times  How amazing that Mia was brave and stood up to her thoughtless teacher for that matter. Tell her thank you and i appreciate her braveness!   Subject: Re: This group To: Date: Tuesday, October 18, 2011, 4:35 PM  Desi, We moved to idaho last June. One Mia's (my typical) first day of school at her new school, a teacher said retard twice in his class. Mia bravely raised her hand and called him out. What a way to be welcomed to her new school. She was so mad at the end of the day. We called Special Olympics and the school. Together we researched the r-word.org campaign and in March, we held a assembly and two kids (Mia and a high school Freshman) gave speeches about the use of the R-word. Since then, we have spear headed Project UNIFY in our region. I am now the Director of our region. We are now in 4 schools in our district. That would be both middle schools and both high schools. We are also in 1 high school in our rival district. Our goal is to have 5 kids from each school representing their schools in our regional Project UNIFY group. From there, the kids can work within their schools to form clubs, to volunteer in Special Olympics, and to promote the r-word campaign. At first, Mia took a lot of heat and heard the word more than she bargained for. I had warned her this would happen. Today, she is seeing her friends and others stand up and say " hey, that's not cool. " She finally feels like she is making a difference and it is making her even more vocal and passionate about Special Olympics and the r-word campaign. It has also helped her realize just how much her brother will need her as he grows older. Mia is 14. It is unfortunate that our typical kids have to endure some of this as well. One thing I know is that it does make them strong kids once they find their voice. I do know that you fight a different culture and that has to be hard. I too feel your pain of wanting to have just one friend to go to lunch with who gets it. Just one person to pick up the phone and spill my guts too that understands. I think that is why we all come here so much. To reach out to those who get it. Where else can I say that my son licks the toilets and people not be grossed out? LOL! May tomorrow be a better day, may you feel stronger and more at rest. I know a good cry always helps pick me up. If I dont have at least one a month I am out of sorts! It is definitely part of my routine! Hugs! Holly This group One of the things that I love about this group is that we can talk and share how it really is in our lives. The good, the bad, and the ugly. The wonderful times when our kids have accomplished those tiny milestones that have taken years to accomplish, and the days when we are ready to scream at yet another smeared poopy wall art master piece. The last couple of days I know we have touched on feeling like the failed Mommy. I know I feel that pretty much once a day for some reason or another. I always wante to be the cookie baking, sit down with my children doing homework, running to baseball, etc type of mom. But honestly, I can barely get dinner on the table most nights and I dont work full time. I often time feel like such a fraud. Everyone looks at us like we are some kids of special person doing the unimaginable. They give us such praise and glory. For being a mom to a special needs child. Really? We are just taking care of our children the best we can. I know there are many people who dont take care of their kids. Special needs kids included. I dont feel special. I dont feel better than everyone else. What I feel is tired. What I feel is that just once I would like to spend the day with my typical child doing the things other families are doing, enjoying her moments without a the challenge of autism. What I would like is to have the freedom to do the little things, like go to the store, go to dinner, go to the mall, go to a sports event, without the challenge of autism. What I would like is to be able to connect with my son. Have a conversation with him, watch him play with other children, see him learn to drive, fall in love, and go off to college. What I would like is for my friends like Desi to be able to have their kids go to a soccer game and not have to worry about a bounce house getting in the way of what could have been a great soccer night for her child. No where else does anyone get our life. No where else does anyone get the stress of our days. The love for our children and the pain of our version of Autism. I do not know what I would do without this group. You guys have been my sanity for so long! Just wanted to each to know that I think you are super Mom's and I dont say that because you have a child with special needs, but because I know what you do each day and I know you do it with love and most often with little sleep! Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2011 Report Share Posted October 19, 2011 Ditto , Holly and Shane! I depend on our group for great ideas (and for my sanity) and am grateful for its existence. I don't know what I would do without the encouragement, support and sage advice from so many. We are heroes, fighting the good fight for our kids. No one knows what this daily walk is like more than our group. Best, To: From: ds-asd@... Date: Tue, 18 Oct 2011 10:42:39 -0700 Subject: Re: This group Amen to everything Holly said.... We are inadequate on our own, and dependent on each other for support. That is the nature of human beings, going through life, facing our own unique challenges. It's nice to be able to share with someone who can relate to our own struggles. That is what makes each one of you heroes. Yes, I said heroes. We learned in the 9/11 attacks who true heroes are. They are ordinary people doing their jobs under extraordinary circumstances. Like the firemen who raced up a burning skyscraper, who knew they faced an impossible task. You are no different than them. You encourage each other against overwhelming odds. We pour out our lives for our precious children. That is enough to be known as a hero. Shane Avery father of , age 11 ________________________________ To: Sent: Tuesday, October 18, 2011 12:58 PM Subject: This group One of the things that I love about this group is that we can talk and share how it really is in our lives. The good, the bad, and the ugly. The wonderful times when our kids have accomplished those tiny milestones that have taken years to accomplish, and the days when we are ready to scream at yet another smeared poopy wall art master piece. The last couple of days I know we have touched on feeling like the failed Mommy. I know I feel that pretty much once a day for some reason or another. I always wante to be the cookie baking, sit down with my children doing homework, running to baseball, etc type of mom. But honestly, I can barely get dinner on the table most nights and I dont work full time. I often time feel like such a fraud. Everyone looks at us like we are some kids of special person doing the unimaginable. They give us such praise and glory. For being a mom to a special needs child. Really? We are just taking care of our children the best we can. I know there are many people who dont take care of their kids. Special needs kids included. I dont feel special. I dont feel better than everyone else. What I feel is tired. What I feel is that just once I would like to spend the day with my typical child doing the things other families are doing, enjoying her moments without a the challenge of autism. What I would like is to have the freedom to do the little things, like go to the store, go to dinner, go to the mall, go to a sports event, without the challenge of autism. What I would like is to be able to connect with my son. Have a conversation with him, watch him play with other children, see him learn to drive, fall in love, and go off to college. What I would like is for my friends like Desi to be able to have their kids go to a soccer game and not have to worry about a bounce house getting in the way of what could have been a great soccer night for her child. No where else does anyone get our life. No where else does anyone get the stress of our days. The love for our children and the pain of our version of Autism. I do not know what I would do without this group. You guys have been my sanity for so long! Just wanted to each to know that I think you are super Mom's and I dont say that because you have a child with special needs, but because I know what you do each day and I know you do it with love and most often with little sleep! Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2011 Report Share Posted October 19, 2011 GROUP HUG: - For our kids health and happiness. - For our sanity - For a collective brain gain!!! On Wed, Oct 19, 2011 at 3:09 PM, McDonnell wrote: > > Ditto , Holly and Shane! > > I depend on our group for great ideas (and for my sanity) and am grateful > for its existence. I don't know what I would do without the encouragement, > support and sage advice from so many. > > We are heroes, fighting the good fight for our kids. No one knows what this > daily walk is like more than our group. > > Best, > > > > > > > To: > From: ds-asd@... > Date: Tue, 18 Oct 2011 10:42:39 -0700 > Subject: Re: This group > > > > > > > Amen to everything Holly said.... We are inadequate on our own, and > dependent on each other for support. That is the nature of human beings, > going through life, facing our own unique challenges. It's nice to be able > to share with someone who can relate to our own struggles. That is what > makes each one of you heroes. Yes, I said heroes. We learned in the 9/11 > attacks who true heroes are. They are ordinary people doing their jobs > under extraordinary circumstances. Like the firemen who raced up a burning > skyscraper, who knew they faced an impossible task. You are no different > than them. You encourage each other against overwhelming odds. We pour out > our lives for our precious children. That is enough to be known as a hero. > > Shane Avery > father of , age 11 > > ________________________________ > > To: > Sent: Tuesday, October 18, 2011 12:58 PM > Subject: This group > > > > One of the things that I love about this group is that we can talk and > share how it really is in our lives. The good, the bad, and the ugly. The > wonderful times when our kids have accomplished those tiny milestones that > have taken years to accomplish, and the days when we are ready to scream at > yet another smeared poopy wall art master piece. > > The last couple of days I know we have touched on feeling like the failed > Mommy. I know I feel that pretty much once a day for some reason or another. > I always wante to be the cookie baking, sit down with my children doing > homework, running to baseball, etc type of mom. But honestly, I can barely > get dinner on the table most nights and I dont work full time. > > I often time feel like such a fraud. Everyone looks at us like we are some > kids of special person doing the unimaginable. They give us such praise and > glory. For being a mom to a special needs child. Really? We are just taking > care of our children the best we can. I know there are many people who dont > take care of their kids. Special needs kids included. I dont feel special. I > dont feel better than everyone else. What I feel is tired. What I feel is > that just once I would like to spend the day with my typical child doing the > things other families are doing, enjoying her moments without a the > challenge of autism. What I would like is to have the freedom to do the > little things, like go to the store, go to dinner, go to the mall, go to a > sports event, without the challenge of autism. What I would like is to be > able to connect with my son. Have a conversation with him, watch him play > with other children, see him learn to drive, fall in love, > and go off to college. What I would like is for my friends like Desi to be > able to have their kids go to a soccer game and not have to worry about a > bounce house getting in the way of what could have been a great soccer night > for her child. > > No where else does anyone get our life. No where else does anyone get the > stress of our days. The love for our children and the pain of our version of > Autism. I do not know what I would do without this group. You guys have been > my sanity for so long! Just wanted to each to know that I think you are > super Mom's and I dont say that because you have a child with special needs, > but because I know what you do each day and I know you do it with love and > most often with little sleep! > > Holly > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2011 Report Share Posted October 20, 2011 I haven't been writing much lately. I am tired too. Really tired... and trying to do less and enjoy it more. I'm trying to leave the important things undone and focus more on what's most important. But I just wanted to write and say this thread is just lovely. It made me smile and cry and I so appreciate hearing from parents of older kids (which helps remind me to pace myself and enjoy what we have right now). And Holly - its true we're all just doing what we can to raise children we love, but if we do it with pride and grace it is a great accomplishment. You are not a fraud. You are a great mom. You are merely expanding the notion of what a great mom does. The romantic idea of motherhood has grown into the reality of motherhood. (and judging from all the mom-blogs and writings out there, we've all over-romanticized and under acknowledged how tough parenting is) Cookies shmookies - we instead make perfectly identical sandwiches every day to tempt our kids to eat! Or we blend avocados and bananas and try to slip in a few vitamins. I think people who tell you that you are amazing are acknowledging that you do not get to do typical things, that you might like to do them, and yet you love your child and have created a good life for your child. This can be hard and you are doing it and for that you are special. If they are wise they also realize that there is joy to be had in this. You are not better than them, and if they had to do it they probably could too, but you are doing it and they aren't. On my good days, I know we are all polished by life's struggles, and I think that as parents of kids with extra needs we are extra shiny gems because we've been rolled around in the tumbler a few extra times. On my bad days that analogy is twisted into a story of dermabrasion gone badly wrong This is long and a bit rambling, but definitely from the heart. I'm so glad I found this list of great people. Oh - and Sara - congrats on your upcoming adoption! (mom to Darwyn) Sent on the TELUS Mobility network with BlackBerry This group  One of the things that I love about this group is that we can talk and share how it really is in our lives. The good, the bad, and the ugly. The wonderful times when our kids have accomplished those tiny milestones that have taken years to accomplish, and the days when we are ready to scream at yet another smeared poopy wall art master piece. The last couple of days I know we have touched on feeling like the failed Mommy. I know I feel that pretty much once a day for some reason or another. I always wante to be the cookie baking, sit down with my children doing homework, running to baseball, etc type of mom. But honestly, I can barely get dinner on the table most nights and I dont work full time. I often time feel like such a fraud. Everyone looks at us like we are some kids of special person doing the unimaginable. They give us such praise and glory. For being a mom to a special needs child. Really? We are just taking care of our children the best we can. I know there are many people who dont take care of their kids. Special needs kids included. I dont feel special. I dont feel better than everyone else. What I feel is tired. What I feel is that just once I would like to spend the day with my typical child doing the things other families are doing, enjoying her moments without a the challenge of autism. What I would like is to have the freedom to do the little things, like go to the store, go to dinner, go to the mall, go to a sports event, without the challenge of autism. What I would like is to be able to connect with my son. Have a conversation with him, watch him play with other children, see him learn to drive, fall in love, and go off to college. What I would like is for my friends like Desi to be able to have their kids go to a soccer game and not have to worry about a bounce house getting in the way of what could have been a great soccer night for her child. No where else does anyone get our life. No where else does anyone get the stress of our days. The love for our children and the pain of our version of Autism. I do not know what I would do without this group. You guys have been my sanity for so long! Just wanted to each to know that I think you are super Mom's and I dont say that because you have a child with special needs, but because I know what you do each day and I know you do it with love and most often with little sleep! Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2011 Report Share Posted October 20, 2011 Thanks , love the part about dermabrasion. LOL, made me laugh! Holly This group One of the things that I love about this group is that we can talk and share how it really is in our lives. The good, the bad, and the ugly. The wonderful times when our kids have accomplished those tiny milestones that have taken years to accomplish, and the days when we are ready to scream at yet another smeared poopy wall art master piece. The last couple of days I know we have touched on feeling like the failed Mommy. I know I feel that pretty much once a day for some reason or another. I always wante to be the cookie baking, sit down with my children doing homework, running to baseball, etc type of mom. But honestly, I can barely get dinner on the table most nights and I dont work full time. I often time feel like such a fraud. Everyone looks at us like we are some kids of special person doing the unimaginable. They give us such praise and glory. For being a mom to a special needs child. Really? We are just taking care of our children the best we can. I know there are many people who dont take care of their kids. Special needs kids included. I dont feel special. I dont feel better than everyone else. What I feel is tired. What I feel is that just once I would like to spend the day with my typical child doing the things other families are doing, enjoying her moments without a the challenge of autism. What I would like is to have the freedom to do the little things, like go to the store, go to dinner, go to the mall, go to a sports event, without the challenge of autism. What I would like is to be able to connect with my son. Have a conversation with him, watch him play with other children, see him learn to drive, fall in love, and go off to college. What I would like is for my friends like Desi to be able to have their kids go to a soccer game and not have to worry about a bounce house getting in the way of what could have been a great soccer night for her child. No where else does anyone get our life. No where else does anyone get the stress of our days. The love for our children and the pain of our version of Autism. I do not know what I would do without this group. You guys have been my sanity for so long! Just wanted to each to know that I think you are super Mom's and I dont say that because you have a child with special needs, but because I know what you do each day and I know you do it with love and most often with little sleep! Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2011 Report Share Posted October 20, 2011 " On my good days, I know we are all polished by life's struggles, and I think that as parents of kids with extra needs we are extra shiny gems because we've been rolled around in the tumbler a few extra times. On my bad days that analogy is twisted into a story of dermabrasion gone badly wrong "  Can I use this quote? It so perfectly describes our journey, I think it should be shared.  Hugs, To: Sent: Thursday, October 20, 2011 1:20 PM Subject: Re: This group  I haven't been writing much lately. I am tired too. Really tired... and trying to do less and enjoy it more. I'm trying to leave the important things undone and focus more on what's most important. But I just wanted to write and say this thread is just lovely. It made me smile and cry and I so appreciate hearing from parents of older kids (which helps remind me to pace myself and enjoy what we have right now). And Holly - its true we're all just doing what we can to raise children we love, but if we do it with pride and grace it is a great accomplishment. You are not a fraud. You are a great mom. You are merely expanding the notion of what a great mom does. The romantic idea of motherhood has grown into the reality of motherhood. (and judging from all the mom-blogs and writings out there, we've all over-romanticized and under acknowledged how tough parenting is) Cookies shmookies - we instead make perfectly identical sandwiches every day to tempt our kids to eat! Or we blend avocados and bananas and try to slip in a few vitamins. I think people who tell you that you are amazing are acknowledging that you do not get to do typical things, that you might like to do them, and yet you love your child and have created a good life for your child. This can be hard and you are doing it and for that you are special. If they are wise they also realize that there is joy to be had in this. You are not better than them, and if they had to do it they probably could too, but you are doing it and they aren't. On my good days, I know we are all polished by life's struggles, and I think that as parents of kids with extra needs we are extra shiny gems because we've been rolled around in the tumbler a few extra times. On my bad days that analogy is twisted into a story of dermabrasion gone badly wrong This is long and a bit rambling, but definitely from the heart. I'm so glad I found this list of great people. Oh - and Sara - congrats on your upcoming adoption! (mom to Darwyn) Sent on the TELUS Mobility network with BlackBerry This group  One of the things that I love about this group is that we can talk and share how it really is in our lives. The good, the bad, and the ugly. The wonderful times when our kids have accomplished those tiny milestones that have taken years to accomplish, and the days when we are ready to scream at yet another smeared poopy wall art master piece. The last couple of days I know we have touched on feeling like the failed Mommy. I know I feel that pretty much once a day for some reason or another. I always wante to be the cookie baking, sit down with my children doing homework, running to baseball, etc type of mom. But honestly, I can barely get dinner on the table most nights and I dont work full time. I often time feel like such a fraud. Everyone looks at us like we are some kids of special person doing the unimaginable. They give us such praise and glory. For being a mom to a special needs child. Really? We are just taking care of our children the best we can. I know there are many people who dont take care of their kids. Special needs kids included. I dont feel special. I dont feel better than everyone else. What I feel is tired. What I feel is that just once I would like to spend the day with my typical child doing the things other families are doing, enjoying her moments without a the challenge of autism. What I would like is to have the freedom to do the little things, like go to the store, go to dinner, go to the mall, go to a sports event, without the challenge of autism. What I would like is to be able to connect with my son. Have a conversation with him, watch him play with other children, see him learn to drive, fall in love, and go off to college. What I would like is for my friends like Desi to be able to have their kids go to a soccer game and not have to worry about a bounce house getting in the way of what could have been a great soccer night for her child. No where else does anyone get our life. No where else does anyone get the stress of our days. The love for our children and the pain of our version of Autism. I do not know what I would do without this group. You guys have been my sanity for so long! Just wanted to each to know that I think you are super Mom's and I dont say that because you have a child with special needs, but because I know what you do each day and I know you do it with love and most often with little sleep! Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2011 Report Share Posted October 20, 2011 Yes please do, and thanks for the compliment. Sent on the TELUS Mobility network with BlackBerry This group  One of the things that I love about this group is that we can talk and share how it really is in our lives. The good, the bad, and the ugly. The wonderful times when our kids have accomplished those tiny milestones that have taken years to accomplish, and the days when we are ready to scream at yet another smeared poopy wall art master piece. The last couple of days I know we have touched on feeling like the failed Mommy. I know I feel that pretty much once a day for some reason or another. I always wante to be the cookie baking, sit down with my children doing homework, running to baseball, etc type of mom. But honestly, I can barely get dinner on the table most nights and I dont work full time. I often time feel like such a fraud. Everyone looks at us like we are some kids of special person doing the unimaginable. They give us such praise and glory. For being a mom to a special needs child. Really? We are just taking care of our children the best we can. I know there are many people who dont take care of their kids. Special needs kids included. I dont feel special. I dont feel better than everyone else. What I feel is tired. What I feel is that just once I would like to spend the day with my typical child doing the things other families are doing, enjoying her moments without a the challenge of autism. What I would like is to have the freedom to do the little things, like go to the store, go to dinner, go to the mall, go to a sports event, without the challenge of autism. What I would like is to be able to connect with my son. Have a conversation with him, watch him play with other children, see him learn to drive, fall in love, and go off to college. What I would like is for my friends like Desi to be able to have their kids go to a soccer game and not have to worry about a bounce house getting in the way of what could have been a great soccer night for her child. No where else does anyone get our life. No where else does anyone get the stress of our days. The love for our children and the pain of our version of Autism. I do not know what I would do without this group. You guys have been my sanity for so long! Just wanted to each to know that I think you are super Mom's and I dont say that because you have a child with special needs, but because I know what you do each day and I know you do it with love and most often with little sleep! Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2011 Report Share Posted October 21, 2011 Hi All, Zeb only has DS but believe me we have had our share of heartstopper days. I also do not like going to just DS groups. Most of those parents brag at how great their children are but trust me they are not entirely truthful. Once I really got to know some of these people and their children I could see that they all had some type of issues. Most of the parents ignored those needs like they would go away or pretended it was ok. I feel most comfortable with this group. Regardless of your child's disability our lives are complicated and difficult. You all recognize your child's strengths and needs and do your best to meet them. You are more in unison with your children than the typical DS parents. I do not believe there is a typical DS kid. I haven't met one the the same yet, similar sometimes but yet not. I'm the exception to this group but yet no different so I think I'll hang around. Cyndi called last night to tell me she is in the hospital. She has been in excruciating back pain. I hope she gets some relief soon. Liz, thrilled that Tori is getting back on track. I have CRS lately so excuse any that I should have and didn't respond too. Welcome to the new members. Charlyne Mom to Zeb 18 DS Subject: RE: This group To: " " < > Date: Wednesday, October 19, 2011, 3:09 PM Ditto , Holly and Shane! I depend on our group for great ideas (and for my sanity) and am grateful for its existence. I don't know what I would do without the encouragement, support and sage advice from so many. We are heroes, fighting the good fight for our kids. No one knows what this daily walk is like more than our group. Best, To: From: ds-asd@... Date: Tue, 18 Oct 2011 10:42:39 -0700 Subject: Re: This group Amen to everything Holly said.... We are inadequate on our own, and dependent on each other for support. That is the nature of human beings, going through life, facing our own unique challenges. It's nice to be able to share with someone who can relate to our own struggles. That is what makes each one of you heroes. Yes, I said heroes. We learned in the 9/11 attacks who true heroes are. They are ordinary people doing their jobs under extraordinary circumstances. Like the firemen who raced up a burning skyscraper, who knew they faced an impossible task. You are no different than them. You encourage each other against overwhelming odds. We pour out our lives for our precious children. That is enough to be known as a hero. Shane Avery father of , age 11 ________________________________ To: Sent: Tuesday, October 18, 2011 12:58 PM Subject: This group One of the things that I love about this group is that we can talk and share how it really is in our lives. The good, the bad, and the ugly. The wonderful times when our kids have accomplished those tiny milestones that have taken years to accomplish, and the days when we are ready to scream at yet another smeared poopy wall art master piece. The last couple of days I know we have touched on feeling like the failed Mommy. I know I feel that pretty much once a day for some reason or another. I always wante to be the cookie baking, sit down with my children doing homework, running to baseball, etc type of mom. But honestly, I can barely get dinner on the table most nights and I dont work full time. I often time feel like such a fraud. Everyone looks at us like we are some kids of special person doing the unimaginable. They give us such praise and glory. For being a mom to a special needs child. Really? We are just taking care of our children the best we can. I know there are many people who dont take care of their kids. Special needs kids included. I dont feel special. I dont feel better than everyone else. What I feel is tired. What I feel is that just once I would like to spend the day with my typical child doing the things other families are doing, enjoying her moments without a the challenge of autism. What I would like is to have the freedom to do the little things, like go to the store, go to dinner, go to the mall, go to a sports event, without the challenge of autism. What I would like is to be able to connect with my son. Have a conversation with him, watch him play with other children, see him learn to drive, fall in love, and go off to college. What I would like is for my friends like Desi to be able to have their kids go to a soccer game and not have to worry about a bounce house getting in the way of what could have been a great soccer night for her child. No where else does anyone get our life. No where else does anyone get the stress of our days. The love for our children and the pain of our version of Autism. I do not know what I would do without this group. You guys have been my sanity for so long! Just wanted to each to know that I think you are super Mom's and I dont say that because you have a child with special needs, but because I know what you do each day and I know you do it with love and most often with little sleep! Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2011 Report Share Posted October 21, 2011 Char: Thanks for letting me know about Cyndi..I will hook up with her later..And thanks for the good thoughts for Tori. We are finally moving forward!!! Liz > ** > > > Hi All, > > Zeb only has DS but believe me we have had our share of heartstopper > days. I also do not like going to just DS groups. Most of those parents > brag at how great their children are but trust me they are not entirely > truthful. Once I really got to know some of these people and their > children I could see that they all had some type of issues. Most of the > parents ignored those needs like they would go away or pretended it was > ok. I feel most comfortable with this group. Regardless of your child's > disability our lives are complicated and difficult. You all recognize > your child's strengths and needs and do your best to meet them. You are > more in unison with your children than the typical DS parents. I do not > believe there is a typical DS kid. I haven't met one the the same yet, > similar sometimes but yet not. I'm the exception to this group but yet > no different so I think I'll hang around. > > Cyndi called last night to tell me she is in the hospital. She has been > in excruciating back pain. I hope she gets some relief soon. Liz, > thrilled that Tori is getting back on track. I have CRS lately so excuse > any that I should have and didn't respond too. Welcome to the new > members. > > Charlyne > > Mom to Zeb 18 DS > > > > > Subject: RE: This group > To: " " < > > Date: Wednesday, October 19, 2011, 3:09 PM > > Ditto , Holly and Shane! > > I depend on our group for great ideas (and for my sanity) and am grateful > for its existence. I don't know what I would do without the encouragement, > support and sage advice from so many. > > We are heroes, fighting the good fight for our kids. No one knows what this > daily walk is like more than our group. > > Best, > > > To: > From: ds-asd@... > Date: Tue, 18 Oct 2011 10:42:39 -0700 > Subject: Re: This group > > > > Amen to everything Holly said.... We are inadequate on our own, and > dependent on each other for support. That is the nature of human beings, > going through life, facing our own unique challenges. It's nice to be able > to share with someone who can relate to our own struggles. That is what > makes each one of you heroes. Yes, I said heroes. We learned in the 9/11 > attacks who true heroes are. They are ordinary people doing their jobs > under extraordinary circumstances. Like the firemen who raced up a burning > skyscraper, who knew they faced an impossible task. You are no different > than them. You encourage each other against overwhelming odds. We pour out > our lives for our precious children. That is enough to be known as a hero. > > Shane Avery > father of , age 11 > > ________________________________ > > To: > Sent: Tuesday, October 18, 2011 12:58 PM > Subject: This group > > > > One of the things that I love about this group is that we can talk and > share how it really is in our lives. The good, the bad, and the ugly. The > wonderful times when our kids have accomplished those tiny milestones that > have taken years to accomplish, and the days when we are ready to scream at > yet another smeared poopy wall art master piece. > > The last couple of days I know we have touched on feeling like the failed > Mommy. I know I feel that pretty much once a day for some reason or another. > I always wante to be the cookie baking, sit down with my children doing > homework, running to baseball, etc type of mom. But honestly, I can barely > get dinner on the table most nights and I dont work full time. > > I often time feel like such a fraud. Everyone looks at us like we are some > kids of special person doing the unimaginable. They give us such praise and > glory. For being a mom to a special needs child. Really? We are just taking > care of our children the best we can. I know there are many people who dont > take care of their kids. Special needs kids included. I dont feel special. I > dont feel better than everyone else. What I feel is tired. What I feel is > that just once I would like to spend the day with my typical child doing the > things other families are doing, enjoying her moments without a the > challenge of autism. What I would like is to have the freedom to do the > little things, like go to the store, go to dinner, go to the mall, go to a > sports event, without the challenge of autism. What I would like is to be > able to connect with my son. Have a conversation with him, watch him play > with other children, see him learn to drive, fall in love, > and go off to college. What I would like is for my friends like Desi to be > able to have their kids go to a soccer game and not have to worry about a > bounce house getting in the way of what could have been a great soccer night > for her child. > > No where else does anyone get our life. No where else does anyone get the > stress of our days. The love for our children and the pain of our version of > Autism. I do not know what I would do without this group. You guys have been > my sanity for so long! Just wanted to each to know that I think you are > super Mom's and I dont say that because you have a child with special needs, > but because I know what you do each day and I know you do it with love and > most often with little sleep! > > Holly > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2011 Report Share Posted October 31, 2011 Thanks Liz Re: This group > Holly, I couldn't have said any of this any better!! > > <3 Liz > > > >> ** >> >> >> One of the things that I love about this group is that we can talk and >> share how it really is in our lives. The good, the bad, and the ugly. The >> wonderful times when our kids have accomplished those tiny milestones >> that >> have taken years to accomplish, and the days when we are ready to scream >> at >> yet another smeared poopy wall art master piece. >> >> The last couple of days I know we have touched on feeling like the failed >> Mommy. I know I feel that pretty much once a day for some reason or >> another. >> I always wante to be the cookie baking, sit down with my children doing >> homework, running to baseball, etc type of mom. But honestly, I can >> barely >> get dinner on the table most nights and I dont work full time. >> >> I often time feel like such a fraud. Everyone looks at us like we are >> some >> kids of special person doing the unimaginable. They give us such praise >> and >> glory. For being a mom to a special needs child. Really? We are just >> taking >> care of our children the best we can. I know there are many people who >> dont >> take care of their kids. Special needs kids included. I dont feel >> special. I >> dont feel better than everyone else. What I feel is tired. What I feel is >> that just once I would like to spend the day with my typical child doing >> the >> things other families are doing, enjoying her moments without a the >> challenge of autism. What I would like is to have the freedom to do the >> little things, like go to the store, go to dinner, go to the mall, go to >> a >> sports event, without the challenge of autism. What I would like is to be >> able to connect with my son. Have a conversation with him, watch him play >> with other children, see him learn to drive, fall in love, and go off to >> college. What I would like is for my friends like Desi to be able to have >> their kids go to a soccer game and not have to worry about a bounce house >> getting in the way of what could have been a great soccer night for her >> child. >> >> No where else does anyone get our life. No where else does anyone get the >> stress of our days. The love for our children and the pain of our version >> of >> Autism. I do not know what I would do without this group. You guys have >> been >> my sanity for so long! Just wanted to each to know that I think you are >> super Mom's and I dont say that because you have a child with special >> needs, >> but because I know what you do each day and I know you do it with love >> and >> most often with little sleep! >> >> Holly >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2011 Report Share Posted October 31, 2011 Ah, Thanks Ali! Holly This group One of the things that I love about this group is that we can talk and share how it really is in our lives. The good, the bad, and the ugly. The wonderful times when our kids have accomplished those tiny milestones that have taken years to accomplish, and the days when we are ready to scream at yet another smeared poopy wall art master piece. The last couple of days I know we have touched on feeling like the failed Mommy. I know I feel that pretty much once a day for some reason or another. I always wante to be the cookie baking, sit down with my children doing homework, running to baseball, etc type of mom. But honestly, I can barely get dinner on the table most nights and I dont work full time. I often time feel like such a fraud. Everyone looks at us like we are some kids of special person doing the unimaginable. They give us such praise and glory. For being a mom to a special needs child. Really? We are just taking care of our children the best we can. I know there are many people who dont take care of their kids. Special needs kids included. I dont feel special. I dont feel better than everyone else. What I feel is tired. What I feel is that just once I would like to spend the day with my typical child doing the things other families are doing, enjoying her moments without a the challenge of autism. What I would like is to have the freedom to do the little things, like go to the store, go to dinner, go to the mall, go to a sports event, without the challenge of autism. What I would like is to be able to connect with my son. Have a conversation with him, watch him play with other children, see him learn to drive, fall in love, and go off to college. What I would like is for my friends like Desi to be able to have their kids go to a soccer game and not have to worry about a bounce house getting in the way of what could have been a great soccer night for her child. No where else does anyone get our life. No where else does anyone get the stress of our days. The love for our children and the pain of our version of Autism. I do not know what I would do without this group. You guys have been my sanity for so long! Just wanted to each to know that I think you are super Mom's and I dont say that because you have a child with special needs, but because I know what you do each day and I know you do it with love and most often with little sleep! Holly Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.