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What makes us so different?
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<blockquote data-quote="Star*" data-source="post: 193782" data-attributes="member: 4964"><p>Okay Guru - </p><p> </p><p>I thought about this ALL day - and on the way home tonight I thought - if she were sitting right here in the car with me (scared to death because I am a defensive driver and I have a button with horrible phrases I push instead of using my finger and fist) HOW would I answer her as to what makes me /us different. I say we, because if I had 40 years I could not explain to you what makes ME different...<img src="/community/styles/default/xenforo/smilies/tongue.png" class="smilie" loading="lazy" alt=":tongue:" title="tongue :tongue:" data-shortname=":tongue:" /></p><p> </p><p>And here's my thought.....</p><p> </p><p>What makes us different from your average parent of an average child (avereage here means no major issues, goes to school, gets along with mostly everyone, good grades, has fear, has goals, doesnt' allow disappointments to be the end of his life, wants to be and strives to be happy and adjusts well to change) </p><p> </p><p>The difference is - I have spent my time in quarters. I've had to. I had to for us (self and son) to survive in an average world. Because the world can feel pity for a child with a bald head - they know it's cancer, they know there's a chance he or she may perish. The world can feel pity for a homeless child, because they blame the parents. The world can feel something for a child in a wheel chair or who uses crutches or has braces, because they can see an impairment. The world makes exceptions for children that are hard of hearing by learning signing, and offers braille to blind kids. But the world is persnickity and it looks at my child and sees - hair, 2 legs, 2 arms, eyes that see, ears that hear and their brains are so conditioned to average children who behave average OR handicapped children who LOOK handicapped that when they meet my handicapped child that looks average it doesn't compute or register or make sense. </p><p> </p><p>So instead of spending 1 whole of my life enjoying my son as any mother should - I've spent 1/4 of my Mother's life trying to figure out what in the world is wrong and praying for an answer so I can get a lable so I can get services. It spent the next 1/4 trying to understand this child that I was given to parent and raise to be a decent human and that's kinda hard when they are kicking and screaming and breaking things and beating on you in rage and calling you ugly names; but I persevered. I spent the next 1/4 of my Mother's life ADVOCATING and PROVING to the world that yes, he looks normal and average, but he's anything BUT - and trying to find new ways to educate the world; sometimes to the point of my own exhaustion because I want them to understand - he didn't get a crutch or a chair or droopy eyes, or slurred speech - he got NO telltale sign that said "I'm ill." So people never understand and they blame the parents. And the last 1/4 of my Mother's life - has been spent sick to the core of my being for wondering and second guessing myself and finally attempting to learn the fine art of detaching before the rest of what life I have left flys by me in a blurr and before I know it I'm 70, alone and mentally ill myself from guilt or raising my own grandchildren when I should be looking forward to taking it easy and enjoying my life and having a life. </p><p> </p><p>The same world of average people who look at other handicapped children at 6,7 8 and feel pity or say things like "I'm so lucky my kids aren't." are the same ones who will be kind to those types of illnesses their whole lives - those handicapped people will always be understood and made exception for. When THEY are 18-20 people will "WEAR A RIBBON" for the cause and make sure those kids and young adults get housing, food, clothes, services. But those same average people look at OUR kids at 18-20 and wince their faces and whisper to each other or just flat out say ugly and hurtful things like "Looser, get a job and Well you can't use what happend in your childhood as an excuse. Even the tone of their voices in reporting the news is that of total disgust." It's a biased world and I've spent a lifetime trying to undo the bias - but bias and prejudice take hundreds of years if ever to heal. Throw into the mix that most of our kids "look" normal - and now it could become full blown segregation. </p><p> </p><p>So if you want to know why WE are so different - as in US as parents of children with invisible disabilities? That's my take. The saddest part for me isn't knowing that I have to allow life to happen so he'll learn. For me the saddest part is knowing that as I allow those lumps to happen without interfering - I know he can touch the stove 101 times and burn his hand and STILL will touch the stove 102 times. There is going to be little change and when he was 9 years old? I could explain it to people by saying "He has PTSD and a rotten childhood." at 18 They (the WORLD) doesn't want to hear it - they don't care. TO them by NOW - he should be different, drug free, employed, happy. And we all wish they would be. TO me BY NOW - I know if nothing is not different by now - it probably never will be and THAT is the struggle. I'm past dreams and wishing - I KNOW.....and that my friend is what makes us different. </p><p> </p><p>Mothers of average children HOPE for a future for their children and they may miss the mark by a little but for them it will be okay that they are a dentist instead of a lawyer. For me? I find my hopes are now - not wishing he graduates, never got to play a sport, or go to a prom, drive his own car - but hoping he doesn't serve 15 years in a federal prison......but maybe just 5 or 7. Or worse yet if he does go to prison for 5 years not 10, or 15 - that with his personality and skewed thinking due to his invisible disability - that he never joins a gang or is raped, or is beaten....your expectations sure do a 180 from "Look at the picture he drew in 2nd grade - he wants to be a veterinarian - I'll frame that." To laying awake at night, angry with the world, God and life - because you went from dreams like that - to "I hope he lives to get out. and I hear you board family - this is ALL his own doing." </p><p> </p><p>There is nothing average about that and THAT makes me different. VERY different.</p><p> </p><p>Hugs - </p><p>A very different Star</p></blockquote><p></p>
[QUOTE="Star*, post: 193782, member: 4964"] Okay Guru - I thought about this ALL day - and on the way home tonight I thought - if she were sitting right here in the car with me (scared to death because I am a defensive driver and I have a button with horrible phrases I push instead of using my finger and fist) HOW would I answer her as to what makes me /us different. I say we, because if I had 40 years I could not explain to you what makes ME different...:raspberry-tounge: And here's my thought..... What makes us different from your average parent of an average child (avereage here means no major issues, goes to school, gets along with mostly everyone, good grades, has fear, has goals, doesnt' allow disappointments to be the end of his life, wants to be and strives to be happy and adjusts well to change) The difference is - I have spent my time in quarters. I've had to. I had to for us (self and son) to survive in an average world. Because the world can feel pity for a child with a bald head - they know it's cancer, they know there's a chance he or she may perish. The world can feel pity for a homeless child, because they blame the parents. The world can feel something for a child in a wheel chair or who uses crutches or has braces, because they can see an impairment. The world makes exceptions for children that are hard of hearing by learning signing, and offers braille to blind kids. But the world is persnickity and it looks at my child and sees - hair, 2 legs, 2 arms, eyes that see, ears that hear and their brains are so conditioned to average children who behave average OR handicapped children who LOOK handicapped that when they meet my handicapped child that looks average it doesn't compute or register or make sense. So instead of spending 1 whole of my life enjoying my son as any mother should - I've spent 1/4 of my Mother's life trying to figure out what in the world is wrong and praying for an answer so I can get a lable so I can get services. It spent the next 1/4 trying to understand this child that I was given to parent and raise to be a decent human and that's kinda hard when they are kicking and screaming and breaking things and beating on you in rage and calling you ugly names; but I persevered. I spent the next 1/4 of my Mother's life ADVOCATING and PROVING to the world that yes, he looks normal and average, but he's anything BUT - and trying to find new ways to educate the world; sometimes to the point of my own exhaustion because I want them to understand - he didn't get a crutch or a chair or droopy eyes, or slurred speech - he got NO telltale sign that said "I'm ill." So people never understand and they blame the parents. And the last 1/4 of my Mother's life - has been spent sick to the core of my being for wondering and second guessing myself and finally attempting to learn the fine art of detaching before the rest of what life I have left flys by me in a blurr and before I know it I'm 70, alone and mentally ill myself from guilt or raising my own grandchildren when I should be looking forward to taking it easy and enjoying my life and having a life. The same world of average people who look at other handicapped children at 6,7 8 and feel pity or say things like "I'm so lucky my kids aren't." are the same ones who will be kind to those types of illnesses their whole lives - those handicapped people will always be understood and made exception for. When THEY are 18-20 people will "WEAR A RIBBON" for the cause and make sure those kids and young adults get housing, food, clothes, services. But those same average people look at OUR kids at 18-20 and wince their faces and whisper to each other or just flat out say ugly and hurtful things like "Looser, get a job and Well you can't use what happend in your childhood as an excuse. Even the tone of their voices in reporting the news is that of total disgust." It's a biased world and I've spent a lifetime trying to undo the bias - but bias and prejudice take hundreds of years if ever to heal. Throw into the mix that most of our kids "look" normal - and now it could become full blown segregation. So if you want to know why WE are so different - as in US as parents of children with invisible disabilities? That's my take. The saddest part for me isn't knowing that I have to allow life to happen so he'll learn. For me the saddest part is knowing that as I allow those lumps to happen without interfering - I know he can touch the stove 101 times and burn his hand and STILL will touch the stove 102 times. There is going to be little change and when he was 9 years old? I could explain it to people by saying "He has PTSD and a rotten childhood." at 18 They (the WORLD) doesn't want to hear it - they don't care. TO them by NOW - he should be different, drug free, employed, happy. And we all wish they would be. TO me BY NOW - I know if nothing is not different by now - it probably never will be and THAT is the struggle. I'm past dreams and wishing - I KNOW.....and that my friend is what makes us different. Mothers of average children HOPE for a future for their children and they may miss the mark by a little but for them it will be okay that they are a dentist instead of a lawyer. For me? I find my hopes are now - not wishing he graduates, never got to play a sport, or go to a prom, drive his own car - but hoping he doesn't serve 15 years in a federal prison......but maybe just 5 or 7. Or worse yet if he does go to prison for 5 years not 10, or 15 - that with his personality and skewed thinking due to his invisible disability - that he never joins a gang or is raped, or is beaten....your expectations sure do a 180 from "Look at the picture he drew in 2nd grade - he wants to be a veterinarian - I'll frame that." To laying awake at night, angry with the world, God and life - because you went from dreams like that - to "I hope he lives to get out. and I hear you board family - this is ALL his own doing." There is nothing average about that and THAT makes me different. VERY different. Hugs - A very different Star [/QUOTE]
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