Today is my Dad's 80th birthday...a birthday I don't think he ever expected to live to see. I'm hoping for many more birthdays, but I am also thankful that he has beaten the odds to make it to the ripe old age of 80. He is the last male of his line and he has lived longer than any other male in his family (that he can remember). Dad has had a lot of hurdles to overcome and has surprised a lot of people with his ability to face adversity and keep on going. He was born during a time in our history when families had to really work just to survive. It was a time before all of the "modern" conveniences of life that we take for granted today. Dad lived on a farm and from a young age, his "job" was to take care of the chickens and the chicken coop. As he grew older, his chore list grew longer and he had to watch his two younger sisters...one 10 years younger and one 15 years younger. His mother taught school and his father worked "the pipeline" in addition to having a farm.
In his early 20s, he met and married Mom and started a family. He worked hard and money was tight but he never complained about the long hours. Dad was a Heavy Equipment Operator...he could run just about any big machine they had on a job. Even though he probably wouldn't admit it, Dad is pretty darn smart. It takes a lot of skill and intelligence to run those machines and Dad was very good at his job. He knew just how far to push a machine without damaging it or endangering himself and the other workers.
Dad was young when his dad died unexpectedly in his 50s from a massive heart attack. Dad became responsible for his own family and for helping his mother raise his sisters. He moved his own little family to the family land and worked not only at his regular job, but also ran the mobile home park that took the place of the family farm. He was "on call" 24/7 for maintenance, he plowed the roads, he parked the trailers and hooked them up to water, sewer, and electric, and he did it all without being paid for it. He was a Deputy Sheriff for Geauga County, Ohio just "for the fun" of it. He lived his life as if he were going to die young like his dad...he never expected to live a long life.
In the late 1970s, Dad started having abdominal pain and spent a month in the local hospital. After many tests, a tumor was finally found attached to the outside of his stomach. After surgery was performed to remove not only the tumor but Dad's stomach, the surgeon told Mom that the cancer was malignant and that Dad would probably only have a few months to live. Mom asked that no one tell Dad because she didn't want him to give up. I still remember how scary it was to see Dad in that hospital bed after his surgery. I knew he would be okay, though, when he scolded his mother for shaking the bed. It wasn't her fault, she was scared, but it still makes me smile. Since he didn't know he was supposed to die, Dad lived and lived well. Once he recovered, he did things that he never dreamed he would do in his life. He travelled to both Columbia and Costa Rica as a chaperone for the college biology students of a family friend. He started his own businesses and he and Mom took trips around the country...some were driving just to drive and some were flying to other states.
The older I get, the more I realize how much I am like my father and because of that, we often butt heads. My mother and my sister took a passive route in life. My father and I are more aggressive toward life. We say what we think even if it's not popular. We prefer to be alone rather than suffer the presence of fools. We are stubborn and if someone tells us it's impossible, we will try anyway. We are slow to trust but once we trust, we are loyal to the end. We are conservative and we take time to think before we take action. Life hasn't always been smooth between us, but we have learned to appreciate each other since we only have each other left of our little family. He has lived through the loss of his wife and two of his children...something that would paralyze most people. He takes an active interest in the lives of his two grandchildren and "granddog". He enjoys the company of his beloved cat, who has saved his sanity if not his life in these past few years...so here's a shout-out to Streaker...thanks for keeping Dad on his toes!
So, Happy Birthday, Dad...you have been important in the lives of many people whether you know it or not. You have changed lives and helped to create them. Thank you for spending time sharing stories with Patrick and Liz...you will never know how much happiness that brings them. Thank you for your generosity and your love... Thank you for being an example of an honest work ethic...something that people today would do well to emulate. And thank you for giving me your stubbornness...I'm proud to be a fighter like you.....
Tuesday, May 14, 2013
Thursday, May 9, 2013
Honesty...or the Hopes of a Mother.....
MY SON HAS ASKED ME TO EDIT/DELETE PART OF THIS POST. AS ALWAYS, I HAVE HONORED HIS REQUEST.
Let's face it...from the moment a woman becomes pregnant until the end of her days as a mother, she has dreams for her baby and its future. We all do, but we don't all admit it. We hold that baby and we see a future athlete, scholar, Nobel Prize winner, or the person who will change the world. We see the Prom King or Queen, the Valedictorian, the star Quarterback...basically, whatever we probably were not but we hope our child will be. It's not realistic...you know it and I know it. It is, however, human nature to want our children to be "more" than we were. I admit, I have had these thoughts as I held my children...I still have them. Every day brings reality and we revise our hopes, dreams, and expectations without changing the depth of our love for our child.
The hardest thing about having a child on the Autistic Spectrum is that reality can be as heartless as the people who don't understand our child and his/her potential. Our first years with our son were so hopeful. He was exceptionally bright with a large vocabulary at a very early age. He was social...he flirted with everyone and loved being around people. He didn't have any noticeable issues...or at least that's what we told ourselves. Our son spent his first years with adults. He was the first child, first grandchild, first everything. We had nothing to compare his progress to and he was happy, so we were happy. He did have an aversion to screaming kids...he felt he was being physically attacked if another child screamed near him. Truth be told, neither of our kids were "screamers" and we all have a sensitivity to "screamers". When he was just shy of his 5th birthday, our daughter was born and her rare bouts of crying never bothered him at all...but crying is different from screaming.
When he started preschool, we began to see what reality can do to a child. He didn't quite "fit" in and he knew it. He didn't know why the other kids didn't really "like" him which was really sad because he tried so hard to find a friend. When he started kindergarten, he became a different child. Our once sunshiny, outgoing, happy little boy disappeared and was replaced with a sadder little boy who would just tell us enough to make it seem like things were going okay. While I was pushing him to invite classmates to play, those kids were teasing him relentlessly and usually, their parents were aware of what was going on. They condoned it because it was "better" to be the parent of a bully than to be the parent of a child who was being bullied. Sometimes it was subtle things but most of the time, the kids were brutal. Because our son was quite large for his age, we taught him to keep from physically fighting back. Unfortunately, other parents didn't teach their kids the same thing. He never fought back...he just shut himself down. By the Second Grade, he was being treated for depression and anxiety. Let me say that again...by the SECOND GRADE, he was being treated for depression and anxiety. A child in second grade should not be depressed or anxious. We didn't get a diagnosis for Asperger's Syndrome until he was 13 years old. He spent his entire elementary school period in a haze of medications and side effects as we struggled to find how to help him.
Our son is now 25 years old. He doesn't have good memories from school. My heart aches because even though we have spent years upon years of telling him that he has done nothing "wrong", that different isn't "bad", society still hasn't changed. Once people get to know him without hearing about his "history", they are impressed with him and his perseverance. He may have taken a little longer to reach his goals, but his road has definitely been harder than most young adults.
I still see the little baby boy I held in my arms and I still see his potential. My vision is clearer and my expectations have been adjusted, but I believe with all my heart that he will achieve all that he was meant to achieve. He has changed the world....the world of the people who know and love him are changed for the better since he came to be. We are wiser, calmer, more patient, more loving, more thankful for the little things in life that make it worth living. We are just waiting for the rest of society to catch up to us....
Let's face it...from the moment a woman becomes pregnant until the end of her days as a mother, she has dreams for her baby and its future. We all do, but we don't all admit it. We hold that baby and we see a future athlete, scholar, Nobel Prize winner, or the person who will change the world. We see the Prom King or Queen, the Valedictorian, the star Quarterback...basically, whatever we probably were not but we hope our child will be. It's not realistic...you know it and I know it. It is, however, human nature to want our children to be "more" than we were. I admit, I have had these thoughts as I held my children...I still have them. Every day brings reality and we revise our hopes, dreams, and expectations without changing the depth of our love for our child.
The hardest thing about having a child on the Autistic Spectrum is that reality can be as heartless as the people who don't understand our child and his/her potential. Our first years with our son were so hopeful. He was exceptionally bright with a large vocabulary at a very early age. He was social...he flirted with everyone and loved being around people. He didn't have any noticeable issues...or at least that's what we told ourselves. Our son spent his first years with adults. He was the first child, first grandchild, first everything. We had nothing to compare his progress to and he was happy, so we were happy. He did have an aversion to screaming kids...he felt he was being physically attacked if another child screamed near him. Truth be told, neither of our kids were "screamers" and we all have a sensitivity to "screamers". When he was just shy of his 5th birthday, our daughter was born and her rare bouts of crying never bothered him at all...but crying is different from screaming.
When he started preschool, we began to see what reality can do to a child. He didn't quite "fit" in and he knew it. He didn't know why the other kids didn't really "like" him which was really sad because he tried so hard to find a friend. When he started kindergarten, he became a different child. Our once sunshiny, outgoing, happy little boy disappeared and was replaced with a sadder little boy who would just tell us enough to make it seem like things were going okay. While I was pushing him to invite classmates to play, those kids were teasing him relentlessly and usually, their parents were aware of what was going on. They condoned it because it was "better" to be the parent of a bully than to be the parent of a child who was being bullied. Sometimes it was subtle things but most of the time, the kids were brutal. Because our son was quite large for his age, we taught him to keep from physically fighting back. Unfortunately, other parents didn't teach their kids the same thing. He never fought back...he just shut himself down. By the Second Grade, he was being treated for depression and anxiety. Let me say that again...by the SECOND GRADE, he was being treated for depression and anxiety. A child in second grade should not be depressed or anxious. We didn't get a diagnosis for Asperger's Syndrome until he was 13 years old. He spent his entire elementary school period in a haze of medications and side effects as we struggled to find how to help him.
Our son is now 25 years old. He doesn't have good memories from school. My heart aches because even though we have spent years upon years of telling him that he has done nothing "wrong", that different isn't "bad", society still hasn't changed. Once people get to know him without hearing about his "history", they are impressed with him and his perseverance. He may have taken a little longer to reach his goals, but his road has definitely been harder than most young adults.
I still see the little baby boy I held in my arms and I still see his potential. My vision is clearer and my expectations have been adjusted, but I believe with all my heart that he will achieve all that he was meant to achieve. He has changed the world....the world of the people who know and love him are changed for the better since he came to be. We are wiser, calmer, more patient, more loving, more thankful for the little things in life that make it worth living. We are just waiting for the rest of society to catch up to us....
Thursday, May 2, 2013
A Heads Up for all you Moms of children on the Autistic Spectrum.....
You are busy...going from day to day and sometimes minute by minute with your kids on the Spectrum. You don't have time to think past the next few hours much less years down the road. We get it...Really, we do. You know why we get it? Because it seems like yesterday that we were there, too. My young adults are now 25 years old and 20 years old...the older is on the spectrum and the younger is studying to help those on the spectrum. Our whole life seems to revolve around "The Spectrum". I can honestly say, though, that it seems like just yesterday that we were juggling IEPs, 504s, therapists, doctors, and meltdowns. I am exhausted just thinking about those days of virtually no sleep and constant worry. I don't want to add to your burden, but it doesn't get any better. I'm sorry, but it just doesn't. The worries change, but they are still constantly there...wearing away at our patience and hope.
We all know how important early intervention is for our kids and we also know that our educational system has requirements that they must meet to ensure our kids get the help they need to succeed. Before, during, and after our son was diagnosed in the late 1990s, there just wasn't the amount of information available to us as there is available to you today. We were stumbling in the dark in more ways than one. Our son was being treated for one thing or another from the time he was in second grade and it wasn't until he was in seventh grade that we finally got an answer.....Asperger's Syndrome. During those early years, we didn't know that we were entitled to an evaluation by the Child Study Team. In fact, we were told that our son was a "behavioral" problem...even though he was exceptionally bright, he didn't qualify for advanced classes because he couldn't "behave". We didn't realize that he was being relentlessly bullied by his classmates, their parents, and the teachers and administrators we trusted to help him. Yes, there were a few that went above and beyond to help him, but they were few and far between. His school years, for lack of a better term, sucked. He suffered every indignity and coped as best he could. We didn't even find out the worst of it until years later. I still feel like I failed him even though I did all that I could with what I knew at the time. So, yes I know how you feel...I know your pain and I know your happiness when some progress is made however small that may be.
Here is the truth....it gets worse. Once your child ages out of the system at 21, what are you going to do then? I know you can't, won't, and don't want to think about it, but we are living it. Let me tell you, the prospects are bleak. But, we CAN and we WILL change this and you will probably benefit from it more than we will because of the bureaucracy we are facing now. Our son dropped out of high school just before his 21st birthday and in the fall of his Senior Year. He was in a bad placement and just could not bear the hurdles he faced each day. It was hard, but we supported him. We are lucky because we can afford to take care of our son's needs...at least for now. He spent years being up and down not knowing what he was going to do with his life and frustrated by the lack of options for him. We got lucky...an angel in disguise moved in next door and saw in our son what others couldn't or wouldn't see. She has worked for him and with him for years now using RDI and boatloads of patience. She offered him a position in her company and his self-esteem slowly started improving. He got his GED last fall as well as his motorcycle license and is looking into classes at our local community college. He is high-functioning most of the time but there are times when he is almost paralyzed by his depression and anxieties. Those are the worst days for us, too. But what is going to happen when we are gone or no longer able to support him as we do today?
Our daughter will always be available to help him but she also has her own life to live. He will need support from someone at various times of his life...support he now gets from us. One of the worst things to happen is to have your child die before you do....I know because I watched my parents lose two of their three children. It is almost as bad, though, to think of your special needs child surviving without you. It is scary....will someone take advantage of him? hurt him physically? mentally? financially? emotionally? Our kids have a hard enough time trusting people on their best days...how are they going to trust when their world is churning from the loss of their parents. Extended families aren't always available...they aren't in our case. Who can you trust?
Well, I believe we have to trust other parents who have lived lives like ours. Other parents of special needs kids and young adults as well as trusted caregivers who understand how our kids feel, think, and live. There is a group of such people working through the red tape of setting up a foundation that will help our young adults. I finally have some hope...not just for the future of my family, but for all of your kids who will eventually age out of required assistance. We are your future...we are parents of adults with ASD in all it's various forms. We are working to provide a safety net for not only our young adults, but for your future adults as well. Please help us by keeping us in your thoughts and prayers while we try to get this initiative off the ground and ready. While I am not personally invested in Touchdown Communities as of yet, I feel very strongly that it will be what saves our young adults. I have listened to Mr. Downes and his associates. I have met his children and I know that he is working not just because of them, but because of all the kids like them. My young adults have worked with his kids and with Ms. Majewski and I have seen the changes made in the lives of families like ours.
For more information, please go to TouchdownCommunities.com or visit their Facebook page..."Like" it if you feel as strongly as I do about the future for our families. While New Jersey is the focus of this grassroots campaign, the goal for the future is facilities on a national and international scale. Even if you don't feel that this is an option for your future, please support them as they help establish new mandates and requirements so that adults on the spectrum are protected. They are laying the groundwork for the future of all our kids and the work is hard...money is tight, laws need to be made and enforced, and most importantly, people need to be educated about our kids...that Autism does not equal murderer or terrorist, retarded or stupid. Education is one of the biggest hurdles facing our kids in light of recent events in our country and around the world. As the folks behind Touchdown Communities negotiate the political, financial, and education reefs, please raise your voice and ask to be heard. Because here is the real truth of this post...NO ONE WILL HELP OUR YOUNG ADULTS UNLESS WE LEAD THE WAY.
We all know how important early intervention is for our kids and we also know that our educational system has requirements that they must meet to ensure our kids get the help they need to succeed. Before, during, and after our son was diagnosed in the late 1990s, there just wasn't the amount of information available to us as there is available to you today. We were stumbling in the dark in more ways than one. Our son was being treated for one thing or another from the time he was in second grade and it wasn't until he was in seventh grade that we finally got an answer.....Asperger's Syndrome. During those early years, we didn't know that we were entitled to an evaluation by the Child Study Team. In fact, we were told that our son was a "behavioral" problem...even though he was exceptionally bright, he didn't qualify for advanced classes because he couldn't "behave". We didn't realize that he was being relentlessly bullied by his classmates, their parents, and the teachers and administrators we trusted to help him. Yes, there were a few that went above and beyond to help him, but they were few and far between. His school years, for lack of a better term, sucked. He suffered every indignity and coped as best he could. We didn't even find out the worst of it until years later. I still feel like I failed him even though I did all that I could with what I knew at the time. So, yes I know how you feel...I know your pain and I know your happiness when some progress is made however small that may be.
Here is the truth....it gets worse. Once your child ages out of the system at 21, what are you going to do then? I know you can't, won't, and don't want to think about it, but we are living it. Let me tell you, the prospects are bleak. But, we CAN and we WILL change this and you will probably benefit from it more than we will because of the bureaucracy we are facing now. Our son dropped out of high school just before his 21st birthday and in the fall of his Senior Year. He was in a bad placement and just could not bear the hurdles he faced each day. It was hard, but we supported him. We are lucky because we can afford to take care of our son's needs...at least for now. He spent years being up and down not knowing what he was going to do with his life and frustrated by the lack of options for him. We got lucky...an angel in disguise moved in next door and saw in our son what others couldn't or wouldn't see. She has worked for him and with him for years now using RDI and boatloads of patience. She offered him a position in her company and his self-esteem slowly started improving. He got his GED last fall as well as his motorcycle license and is looking into classes at our local community college. He is high-functioning most of the time but there are times when he is almost paralyzed by his depression and anxieties. Those are the worst days for us, too. But what is going to happen when we are gone or no longer able to support him as we do today?
Our daughter will always be available to help him but she also has her own life to live. He will need support from someone at various times of his life...support he now gets from us. One of the worst things to happen is to have your child die before you do....I know because I watched my parents lose two of their three children. It is almost as bad, though, to think of your special needs child surviving without you. It is scary....will someone take advantage of him? hurt him physically? mentally? financially? emotionally? Our kids have a hard enough time trusting people on their best days...how are they going to trust when their world is churning from the loss of their parents. Extended families aren't always available...they aren't in our case. Who can you trust?
Well, I believe we have to trust other parents who have lived lives like ours. Other parents of special needs kids and young adults as well as trusted caregivers who understand how our kids feel, think, and live. There is a group of such people working through the red tape of setting up a foundation that will help our young adults. I finally have some hope...not just for the future of my family, but for all of your kids who will eventually age out of required assistance. We are your future...we are parents of adults with ASD in all it's various forms. We are working to provide a safety net for not only our young adults, but for your future adults as well. Please help us by keeping us in your thoughts and prayers while we try to get this initiative off the ground and ready. While I am not personally invested in Touchdown Communities as of yet, I feel very strongly that it will be what saves our young adults. I have listened to Mr. Downes and his associates. I have met his children and I know that he is working not just because of them, but because of all the kids like them. My young adults have worked with his kids and with Ms. Majewski and I have seen the changes made in the lives of families like ours.
For more information, please go to TouchdownCommunities.com or visit their Facebook page..."Like" it if you feel as strongly as I do about the future for our families. While New Jersey is the focus of this grassroots campaign, the goal for the future is facilities on a national and international scale. Even if you don't feel that this is an option for your future, please support them as they help establish new mandates and requirements so that adults on the spectrum are protected. They are laying the groundwork for the future of all our kids and the work is hard...money is tight, laws need to be made and enforced, and most importantly, people need to be educated about our kids...that Autism does not equal murderer or terrorist, retarded or stupid. Education is one of the biggest hurdles facing our kids in light of recent events in our country and around the world. As the folks behind Touchdown Communities negotiate the political, financial, and education reefs, please raise your voice and ask to be heard. Because here is the real truth of this post...NO ONE WILL HELP OUR YOUNG ADULTS UNLESS WE LEAD THE WAY.
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