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.
Sunday, April 28, 2013
Before the Elephant called "Autism" entered the room Part Two.....
At first glance, most people would assume that any relationship between my husband and I would be doomed to failure. On the surface, we were different....I was a "country" girl and he was a "city" boy. I was Protestant and he was Catholic. My family was blue collar and his family was white collar. And so on and on it goes. Under the surface, however, we are quite a lot alike. We are both stubborn, loyal, and value the family unit as we saw it growing up. John's parents were very different from my parents but they also put family before themselves. John's father was one of seventeen children and his mother was one of eight children. John never knew his grandmothers because both died at a young age...can't imagine why. I say this with the utmost respect, but his paternal grandmother probably only wore one none-maternity dress in her adult life and that was her wedding dress. Though several of the children didn't survive infancy and there were a couple of sets of twins, that poor woman was pregnant, had just given birth, or was taking care of a baby most of her marriage. My father-in-law was one of the elder children and helped support his family through the "Great Depression" and even through his adult life, he helped support his younger siblings.
John's mother was the youngest child until her family adopted a baby when my mother-in-law was a teenager. Both families took care of their own during the tough and not-so-tough times. It would not be incorrect for me to say that there were a few family members who were a little "off"...some enough to be sent away for care and some just enough to be odd. John's dad was 20 years older than his mom...he was actually of my grandfather's generation while his mother was about the same age as my parents. They married in 1957 and John was born in October 1958. When he was about 18 months old, his parents bought the house next door to his father's family. Though just a toddler, John's mom told the story of how he cried and cried when he had to leave the apartment for his new home....hmmm...he didn't like change. John has a younger sister and brother and they are all close in age. From what he remembers, they had a wonderful childhood...mostly spent within the few blocks surrounding their home. Their life revolved around home, school, family, and their church which was just around the corner. Once John started Kindergarten at age 4, his life was very structured. He attended a Catholic elementary school, a Catholic Boys High School, and a Catholic college all within a bus ride from his home. Weekends were spent with his Godfather and his aunts who also lived in the same small city. His Godfather was also his uncle...his mother's brother who was closest to her in age. Uncle Alvin was seriously injured in the Korean War and this changed his entire life. He was paralyzed and eventually lost both his legs and lived with his sisters until he passed away in the 1970s. John learned to appreciate how fragile life was and how to make the best of any situation from his uncle who had many interests chief among them was keeping little "Johnny" occupied. John knew from a young age that he wanted to be a dentist and he never deviated from this goal. Following his college graduation, he enrolled in a dental school two hours away from home and spent the next years driving back and forth on the weekends. After that, he joined the USAF in 1984 from which he retired after a 20-year career. He now works at the same place in the same job slot he held while on active duty only now he works for the VA.
I love my husband dearly and would not change anything about him but I do have my suspicions that he also has Asperger's Syndrome...he just copes better than most people because of the tight structure that he had in his early days. He is extremely intelligent, compassionate, and very good at his work. He also prefers to stay at home rather than socialize and most definitely has OCD. He never throws anything away if he can get away with it. The military was a good fit because of the structure and because he was a medical officer, his life was different from that of a line officer. He is still doing what he has always wanted to do...practicing dentistry on patients who serve their country.
John and I met during his senior year of dental school. We met in October, were engaged by December, and married by June right after his graduation. The day after our wedding reception, he went on active duty and we left for Texas for his version of basic training. I couldn't have asked for more in a partner...we got to have experiences within a structured lifestyle and while I tolerate his idiosyncrasies, he also tolerates mine...and I have a lot! The early years of our marriage were spent getting to know each other better and finding our way in the world as a couple. It was 3 years before things would change and we were enjoying every minute of what life was offering us. It's not so much that we went anywhere or did anything particularly exciting but that we decided early on that we would face life as an adventure and make the best of what opportunities we were given. We have always tried to instill that way of thinking into our children as well. You can either accept what comes your way and enjoy what is there to be enjoyed or you can be miserable. Life is too short to be miserable....And now on to the arrival of the elephant......
John's mother was the youngest child until her family adopted a baby when my mother-in-law was a teenager. Both families took care of their own during the tough and not-so-tough times. It would not be incorrect for me to say that there were a few family members who were a little "off"...some enough to be sent away for care and some just enough to be odd. John's dad was 20 years older than his mom...he was actually of my grandfather's generation while his mother was about the same age as my parents. They married in 1957 and John was born in October 1958. When he was about 18 months old, his parents bought the house next door to his father's family. Though just a toddler, John's mom told the story of how he cried and cried when he had to leave the apartment for his new home....hmmm...he didn't like change. John has a younger sister and brother and they are all close in age. From what he remembers, they had a wonderful childhood...mostly spent within the few blocks surrounding their home. Their life revolved around home, school, family, and their church which was just around the corner. Once John started Kindergarten at age 4, his life was very structured. He attended a Catholic elementary school, a Catholic Boys High School, and a Catholic college all within a bus ride from his home. Weekends were spent with his Godfather and his aunts who also lived in the same small city. His Godfather was also his uncle...his mother's brother who was closest to her in age. Uncle Alvin was seriously injured in the Korean War and this changed his entire life. He was paralyzed and eventually lost both his legs and lived with his sisters until he passed away in the 1970s. John learned to appreciate how fragile life was and how to make the best of any situation from his uncle who had many interests chief among them was keeping little "Johnny" occupied. John knew from a young age that he wanted to be a dentist and he never deviated from this goal. Following his college graduation, he enrolled in a dental school two hours away from home and spent the next years driving back and forth on the weekends. After that, he joined the USAF in 1984 from which he retired after a 20-year career. He now works at the same place in the same job slot he held while on active duty only now he works for the VA.
I love my husband dearly and would not change anything about him but I do have my suspicions that he also has Asperger's Syndrome...he just copes better than most people because of the tight structure that he had in his early days. He is extremely intelligent, compassionate, and very good at his work. He also prefers to stay at home rather than socialize and most definitely has OCD. He never throws anything away if he can get away with it. The military was a good fit because of the structure and because he was a medical officer, his life was different from that of a line officer. He is still doing what he has always wanted to do...practicing dentistry on patients who serve their country.
John and I met during his senior year of dental school. We met in October, were engaged by December, and married by June right after his graduation. The day after our wedding reception, he went on active duty and we left for Texas for his version of basic training. I couldn't have asked for more in a partner...we got to have experiences within a structured lifestyle and while I tolerate his idiosyncrasies, he also tolerates mine...and I have a lot! The early years of our marriage were spent getting to know each other better and finding our way in the world as a couple. It was 3 years before things would change and we were enjoying every minute of what life was offering us. It's not so much that we went anywhere or did anything particularly exciting but that we decided early on that we would face life as an adventure and make the best of what opportunities we were given. We have always tried to instill that way of thinking into our children as well. You can either accept what comes your way and enjoy what is there to be enjoyed or you can be miserable. Life is too short to be miserable....And now on to the arrival of the elephant......
Friday, April 26, 2013
Before The Elephant Called "Autism" entered the room...
You know the "thing"...yes, that "thing" that decides what you and your family can do each day. It decides where and when you go places and it decides how long you can stray from your usual routine. That "thing" determines the family dynamics and social interactions. I'm talking about that "thing" called "Autism" or "Autistic Spectrum Disorder". We have wrestled with it for years now and just when we think we have a handle on it, it changes and we are back to square one again. Well, I am calling it out. Yes...you over there in the middle of the room...you "ASD" thing. You better get ready because I am taking some control back! You will NOT be holding my family hostage anymore. My sword is drawn and I am a mother bear protecting her cubs! You'd better not turn your back on me!
Before I begin this battle, though, I'd like to talk about life before. Before the elephant came to live in my house...you know, back when Ozzie and Harriet and the Cleavers showed us how to be "perfect" parents. Back in the days when I was growing up (I am old. I was born in late 1958 and my childhood was spent in the Sixties.), life was different. Most people lived near where they had been raised and families were big...lots of aunts, uncles, and cousins. It was like that for me, too. My mother's parents not only helped raise a niece, but also opened their home to my grandmother's parents. In fact, I can't remember a time when my great-grandparents didn't live with my grandparents. It was wonderful for me but I suspect it was a lot harder on my grandparents than they let on. I had two full sets of great-grandparents until I was in high school and I thought that was normal. My parents made sure that my sister and I spent a lot of time with our great-grandparents and I learned a lot from them. I learned what true love really was back in those days. My great-grandfather treated his wife with tender care even when her mind diminished. He took her to her favorite place...a campground where they had a trailer on a lake...and he took care of her. He took such good care of her that while they were driving home and he felt a heart attack coming on, he pulled over into a parking lot as he died. A kind stranger helped my confused and frightened great-grandmother, called an ambulance (all in the days before cell phones and 911), and stayed with her until help arrived. That was the kind of world it was then...a stranger helping an elderly couple and then disappearing without leaving his name.
It wasn't just my mother's family, though, it was my dad's family, too. My dad was a young man in his twenties who worked hard to support his young family. He and my mom had lost a son in the year before I was born...a newborn who suffered from "Rh Incompatibility" which could have been treated had they but known that he was at risk. I was born the following year and then my sister was born a little more than 2 years after that...we were both at risk, but my parents made sure we were born in a hospital that could treat the disorder. When I was 3 years old, my dad's father died in his sleep. He was young...only in his 50's. He had a wife, my dad, and two daughters who were much younger than my dad. My parents gave up their little family life and moved into the small township where my father's family had land. My dad not only worked full-time, but he took care of the family business and worked as a Deputy Sheriff. Money was tight, but we didn't know it...we had fields to play in and barns and buildings to explore. My youngest aunt was like an older sister to me...only 10 years separated us. We had a trunk full of old dance costumes to dress up in, old-fashioned roller skates and cement pads to skate on....life was good.
Here's what I'm getting at...back in the "Good Old Days", families took care of themselves. We all had that relative who was slightly "off" or maybe just socially awkward and we accepted them, loved them, and kept them with us in the family home. I know not everyone was able to do that...there were people who had to be "Institutionalized" or put in a "Nursing" home. Our family had to do that, too, and it was painful. But, what I am awkwardly trying to say is this...back in the day, our options were limited. We did what we had to do out of love as we still do today, but back then it was either home or institution. Institution really meant warehousing...no real treatments, no social interaction, just a place to keep them. Even though the world today is much different, we have options that weren't available back then.
Stay tuned, friends, for more on the story of the elephant and what I am doing to get it out of my living room.....
Before I begin this battle, though, I'd like to talk about life before. Before the elephant came to live in my house...you know, back when Ozzie and Harriet and the Cleavers showed us how to be "perfect" parents. Back in the days when I was growing up (I am old. I was born in late 1958 and my childhood was spent in the Sixties.), life was different. Most people lived near where they had been raised and families were big...lots of aunts, uncles, and cousins. It was like that for me, too. My mother's parents not only helped raise a niece, but also opened their home to my grandmother's parents. In fact, I can't remember a time when my great-grandparents didn't live with my grandparents. It was wonderful for me but I suspect it was a lot harder on my grandparents than they let on. I had two full sets of great-grandparents until I was in high school and I thought that was normal. My parents made sure that my sister and I spent a lot of time with our great-grandparents and I learned a lot from them. I learned what true love really was back in those days. My great-grandfather treated his wife with tender care even when her mind diminished. He took her to her favorite place...a campground where they had a trailer on a lake...and he took care of her. He took such good care of her that while they were driving home and he felt a heart attack coming on, he pulled over into a parking lot as he died. A kind stranger helped my confused and frightened great-grandmother, called an ambulance (all in the days before cell phones and 911), and stayed with her until help arrived. That was the kind of world it was then...a stranger helping an elderly couple and then disappearing without leaving his name.
It wasn't just my mother's family, though, it was my dad's family, too. My dad was a young man in his twenties who worked hard to support his young family. He and my mom had lost a son in the year before I was born...a newborn who suffered from "Rh Incompatibility" which could have been treated had they but known that he was at risk. I was born the following year and then my sister was born a little more than 2 years after that...we were both at risk, but my parents made sure we were born in a hospital that could treat the disorder. When I was 3 years old, my dad's father died in his sleep. He was young...only in his 50's. He had a wife, my dad, and two daughters who were much younger than my dad. My parents gave up their little family life and moved into the small township where my father's family had land. My dad not only worked full-time, but he took care of the family business and worked as a Deputy Sheriff. Money was tight, but we didn't know it...we had fields to play in and barns and buildings to explore. My youngest aunt was like an older sister to me...only 10 years separated us. We had a trunk full of old dance costumes to dress up in, old-fashioned roller skates and cement pads to skate on....life was good.
Here's what I'm getting at...back in the "Good Old Days", families took care of themselves. We all had that relative who was slightly "off" or maybe just socially awkward and we accepted them, loved them, and kept them with us in the family home. I know not everyone was able to do that...there were people who had to be "Institutionalized" or put in a "Nursing" home. Our family had to do that, too, and it was painful. But, what I am awkwardly trying to say is this...back in the day, our options were limited. We did what we had to do out of love as we still do today, but back then it was either home or institution. Institution really meant warehousing...no real treatments, no social interaction, just a place to keep them. Even though the world today is much different, we have options that weren't available back then.
Stay tuned, friends, for more on the story of the elephant and what I am doing to get it out of my living room.....
Thursday, April 25, 2013
A Kick in the Rear to Get Moving Again....
I've been absent from blogging as I struggle with several issues in my life...it doesn't take much to push me into the "what-do-I-do-when-there-is-too-much-to-do" zone. I've kind of been stuck there since last fall. Nothing gets done as I am overwhelmed with a long list of things that I should do before there is no time left to do them. These things range from the emotional to the physical but they all share one thing...they force me to shut down. I worry about my father who lives about 8 hours away and is the only member of my "original" family that I have left now. I can't continue to take his health for granted and I don't want him to think that I don't care because I am not with him more often. I worry about my husband who works too hard and doesn't get as much rest as he needs. I worry about our son whose journey has so many roadblocks and hazards because of his Asperger's and other related health issues. I worry about our daughter who is away at college and is sometimes so stressed and overwhelmed that she calls me in tears. I worry about our beloved pug, Ginger, whose time on earth is coming to an end as she slowly becomes paralyzed. I worry about myself and all the health issues I face because I am not taking care of myself. I worry about my extended family and friends and how this world is changing so rapidly and becoming so dangerous. It seems there is so much for me to worry about and that I am limited to some extent in what I can do to change things.
I don't know how I got stuck so hard in this place...it just seems like one thing came upon me after another so fast that I couldn't process and act in response. It's an excuse...I know that...I guess I'm good at excuses. But, I am going to change that....I am, really. This week I attended an informational meeting for a project that gives me much hope and I am inspired by the dedication of the individuals involved in starting up this complex but desperately needed project. If these people can do this with all the "I"s to dot and "T"s to cross, then I can overcome what I face and help them.
So...I am going to try to get myself motivated in these next weeks. It will be hard, I know, because the easiest thing to do is to keep doing nothing. I will find a way to let my dad know that I love him and he is important to me even though I can't always be with him when I want to be there. I will find a way to reduce the stress for my husband so that he can rest and recharge. I will find a way to help our son negotiate a world that doesn't always understand why different is good. I will find a way to help our daughter enjoy this interlude in her life. I will find a way to love Ginger with all the love I have to give her so that her last days are good to make up for the bad days before she came into our family life. I will still worry about my extended family and friends but I will remember that they know I am praying for them. I will try to help to create a safety net in this crazy and dangerous world. And by doing these things, I will be helping myself.
If you are interested in helping me change, a good place to start is with the project that has motivated me to change....go to Touchdown Communities.com or go their Facebook Page for more information. What is starting as a local initiative will go national and international as people begin to share the vision....I can't wait to see what's going to happen!
I don't know how I got stuck so hard in this place...it just seems like one thing came upon me after another so fast that I couldn't process and act in response. It's an excuse...I know that...I guess I'm good at excuses. But, I am going to change that....I am, really. This week I attended an informational meeting for a project that gives me much hope and I am inspired by the dedication of the individuals involved in starting up this complex but desperately needed project. If these people can do this with all the "I"s to dot and "T"s to cross, then I can overcome what I face and help them.
So...I am going to try to get myself motivated in these next weeks. It will be hard, I know, because the easiest thing to do is to keep doing nothing. I will find a way to let my dad know that I love him and he is important to me even though I can't always be with him when I want to be there. I will find a way to reduce the stress for my husband so that he can rest and recharge. I will find a way to help our son negotiate a world that doesn't always understand why different is good. I will find a way to help our daughter enjoy this interlude in her life. I will find a way to love Ginger with all the love I have to give her so that her last days are good to make up for the bad days before she came into our family life. I will still worry about my extended family and friends but I will remember that they know I am praying for them. I will try to help to create a safety net in this crazy and dangerous world. And by doing these things, I will be helping myself.
If you are interested in helping me change, a good place to start is with the project that has motivated me to change....go to Touchdown Communities.com or go their Facebook Page for more information. What is starting as a local initiative will go national and international as people begin to share the vision....I can't wait to see what's going to happen!
Monday, September 3, 2012
Redefining myself.....yet again.......
A new milestone has been reached...one that I am not entirely sure I am ready to acknowledge. My "baby" has turned 20 years old today! Where did the time go??? While I am proud of the young woman she is becoming, I mourn the loss of the girl she was. I have been trying to prepare for this day for months now...no more "kids" but "young adults" in my posts. I thought it would help ease the transition but I was wrong.
My adult life has been one of transitions...the first being "Before John" and "After John". My world was turned on its axis when I met John...for the good that is. He has taught me so much about myself, love, and life that I can't even describe the way my world has changed. We met in October, became engaged in December, and were married in June. We left for a new "military" life hundreds of miles from home and our first year together was one spent getting to really know each other and how different the world is when you have someone to share all that is out there. It was a year for adventures as mundane as learning to manage time, money, and resources. It was also a year for adventures like moving across several states, making new friends, and setting up our own household.
The next transition in life was "Before Patrick" and "After Patrick". How naive we were to think that adding a baby wouldn't change our life that much! Having had a miscarriage before becoming pregnant with Patrick (and another one when Patrick was only a few months old), we enjoyed every minute of this new life! Even though exhaustion became the norm, we marveled at this little person we created. Surely no baby was as smart, as beautiful, as special as this little fussy boy! Talk about adventures...having this baby/toddler took adventures to a whole new level! Reading well before he was two, Patrick kept us hopping to stay ahead of the game. Some of our best and happiest years were while we lived in Texas with our little blond guy!
While we lived in Texas, the next transition in life came knocking...."Before Elizabeth" and "After Elizabeth". An unexpected blessing wrapped up in an angel wrapped up in a baby girl! My sister had passed away unexpectedly in September and my extended family was mourning her loss. Just before Christmas, I had a urinary tract infection that would not clear up....turned out that it wasn't just an infection but a baby! Calculating out the date of her birth, we were blessed to find she was due almost exactly one year to the day of my sister's death. I know it wasn't a coincidence. We weren't trying to get pregnant and I almost lost her nine weeks into the pregnancy. She was a fighter, though, and held on until September. She was such an easy, happy baby. There never was EVER a baby as beautiful, sweet, and loving as this little girl with the long, long name!
When Liz was 8 weeks old, we moved to New Jersey and I settled into what became "normal" life for us. Patrick was five years old and in nursery school and I became "Mom of Preschooler and Baby/Toddler". Such hectic years and they were gone in the blink of an eye! I became "Elementary and Preschool Mom" and then just "Elementary Mom". Years of volunteering and play dates, birthday parties and parent conferences...it's a blur now but I know that I was where I wanted to be.
I had no trouble adjusting to being the Mom of High School Students because I was so busy with "Team Mom" and "Driving Mom"...the years flew by in a myopic blur.
This transition, though, is difficult. My "kids" no longer need me like they did when they were young. Liz is off at college most of the time...new friends that I don't know, experiences that I am not a part of. Patrick is still living at home, but he is working and has vast parts of his life that don't need me around. I'm not saying this is bad because it means that John and I did something right. Our young adults don't really "need" us even though we do all enjoy being together. It just leaves me wondering what to call myself now...how do I see these next years?
I guess now is the short window of time for me to do what I want to do for me...but what is that exactly? All those years of doing what I had to do to keep our family running left me time to do a lot of things but now I have hours of empty time....what now??? I have a few things that I used to wonder if I would ever have time to do...but nothing as important as raising my family. I'd like to do some organic container gardening, exercise more, maybe learn to play the celtic harp, and maybe start volunteering again. When we were first married, I was a Red Cross Volunteer and I helped in the Base Thrift Shop. I would really LOVE to rock babies in the hospital, but I don't know if I qualify. I would also LOVE to foster pugs but that has to wait until Ginger is no longer here...something I am in NO hurry to experience.
So this transitional time I guess I will call..."Growing" time. I am going to try to become a better person, a more productive person, and maybe get to know my husband again...just the two of us for the first time since 1987. This may just be one of the most challenging parts of my life.....
My adult life has been one of transitions...the first being "Before John" and "After John". My world was turned on its axis when I met John...for the good that is. He has taught me so much about myself, love, and life that I can't even describe the way my world has changed. We met in October, became engaged in December, and were married in June. We left for a new "military" life hundreds of miles from home and our first year together was one spent getting to really know each other and how different the world is when you have someone to share all that is out there. It was a year for adventures as mundane as learning to manage time, money, and resources. It was also a year for adventures like moving across several states, making new friends, and setting up our own household.
The next transition in life was "Before Patrick" and "After Patrick". How naive we were to think that adding a baby wouldn't change our life that much! Having had a miscarriage before becoming pregnant with Patrick (and another one when Patrick was only a few months old), we enjoyed every minute of this new life! Even though exhaustion became the norm, we marveled at this little person we created. Surely no baby was as smart, as beautiful, as special as this little fussy boy! Talk about adventures...having this baby/toddler took adventures to a whole new level! Reading well before he was two, Patrick kept us hopping to stay ahead of the game. Some of our best and happiest years were while we lived in Texas with our little blond guy!
While we lived in Texas, the next transition in life came knocking...."Before Elizabeth" and "After Elizabeth". An unexpected blessing wrapped up in an angel wrapped up in a baby girl! My sister had passed away unexpectedly in September and my extended family was mourning her loss. Just before Christmas, I had a urinary tract infection that would not clear up....turned out that it wasn't just an infection but a baby! Calculating out the date of her birth, we were blessed to find she was due almost exactly one year to the day of my sister's death. I know it wasn't a coincidence. We weren't trying to get pregnant and I almost lost her nine weeks into the pregnancy. She was a fighter, though, and held on until September. She was such an easy, happy baby. There never was EVER a baby as beautiful, sweet, and loving as this little girl with the long, long name!
When Liz was 8 weeks old, we moved to New Jersey and I settled into what became "normal" life for us. Patrick was five years old and in nursery school and I became "Mom of Preschooler and Baby/Toddler". Such hectic years and they were gone in the blink of an eye! I became "Elementary and Preschool Mom" and then just "Elementary Mom". Years of volunteering and play dates, birthday parties and parent conferences...it's a blur now but I know that I was where I wanted to be.
I had no trouble adjusting to being the Mom of High School Students because I was so busy with "Team Mom" and "Driving Mom"...the years flew by in a myopic blur.
This transition, though, is difficult. My "kids" no longer need me like they did when they were young. Liz is off at college most of the time...new friends that I don't know, experiences that I am not a part of. Patrick is still living at home, but he is working and has vast parts of his life that don't need me around. I'm not saying this is bad because it means that John and I did something right. Our young adults don't really "need" us even though we do all enjoy being together. It just leaves me wondering what to call myself now...how do I see these next years?
I guess now is the short window of time for me to do what I want to do for me...but what is that exactly? All those years of doing what I had to do to keep our family running left me time to do a lot of things but now I have hours of empty time....what now??? I have a few things that I used to wonder if I would ever have time to do...but nothing as important as raising my family. I'd like to do some organic container gardening, exercise more, maybe learn to play the celtic harp, and maybe start volunteering again. When we were first married, I was a Red Cross Volunteer and I helped in the Base Thrift Shop. I would really LOVE to rock babies in the hospital, but I don't know if I qualify. I would also LOVE to foster pugs but that has to wait until Ginger is no longer here...something I am in NO hurry to experience.
So this transitional time I guess I will call..."Growing" time. I am going to try to become a better person, a more productive person, and maybe get to know my husband again...just the two of us for the first time since 1987. This may just be one of the most challenging parts of my life.....
Subscribe to:
Posts (Atom)