Five years ago yesterday some friends were victims of a home invasion. Two armed men invaded their house at dinner time. The couple had three children. The husband was able to attack one of the invaders and was wresting on the floor with him and he was shot. After the shooting both the invaders left the house and were never caught. My friend who was shot spent an extended stay in trauma ICU and survived the attack. This family encountered extensive trauma from the incident and moved immediately to a safer location.
Doing what true friends do, I came to their immediate assistance. I did all I could to help. I packed their things, moved them into storage. I recruited people to help paint, rip up carpets, clean, handle contractors. A little of anything and everything. At first, it was just about love, giving back and doing all I could to help this family in crisis. But SHOCKINGLY, it developed into so much MORE.
As I was working on the house and all that needed to be done, I remembered my own traumatic history. I was injured on the job (many years before) working as a technician in a respiratory ICU unit. I was three classes away from completing my nursing degree. My husband and I had a plan that when he graduated with his associate degree I would return and finish my degree to be a registered nurse. After receiving inaccurate information from a nurse I encountered a back injury turning a 580 pound patient. It ended my future in nursing forever. I was devastated. The only thing that topped my devastation of never being a nurse was my sons diagnosis with autism.
I spent months full time, many days 15-16 hours a day working on this house getting it ready to be sold. Spending quiet time with my own thoughts was very enlightening yet revealing at the same time. So many around me didn't understand what was happening. At the time I wasn't sure either. It was all internal. The Lord was working inside me. My viewpoint and my focus were changing. I WAS CHANGING. Once again from that moment my life has never been the same.
My husband and I had four kids when we married and the oldest was only five. Two step children and two biological children. My youngest Caleb was born three weeks after we married. We had a ready made family. With lots of activity all around us all the time. Life was busy. After my sons diagnosis with autism at two and a half it became downright hectic. Dealing with therapists, schools, doctors, educators, behavior specialists. It kept me hopping for a long time.
At the time when I was working on this house preparing it to be sold my son affected with autism was finishing his junior year in high school. He was doing fabulous. Our three other children had already graduated high school and two were in college. Suddenly my life was not as hectic anymore. For an autism mom one would think it would be a welcome time in life. For me it wasn't. I was suddenly left without a purpose. I felt lost. Autism was such an all consuming presence in my life for so long.
I found myself standing up on the ladder with paint brush in hand. Asking myself a bunch of hard questions. What do I want for my life? Is there anything that I feel about passionately as I did for nursing? If so, how can I put that to use? What do I need to do to prepare for it?
At the time when my son was diagnosed in 1996, there was little information and research done on autism spectrum disorders. Information was not as readily available as it is now. With the diagnosis rate then around one in 500, it was unlikely to find another parent going through what I was going through. It was decided in that empty house surrounded only by a multitude of pain cans, paint all over my clothes and even stuck in my hair. I was going to help families with children affected by autism. This was my new mission. I NOW HAD A NEW PURPOSE.
One day after a long days work on the house I came home and told my husband that I had decided to go back to school. He was shocked. It really did come out of nowhere. In January 2011 I started school at Empire State College majoring in Bachelor of Science: Human and Community Services. I also enrolled in the NY Partners in Policy Making Program at Cornell University hosted by the NY State Developmental Disabilities Planning Council. I also attended lay advocate training to learn how to advocate so I can assist other parents. I grew as a student and future professional. I have had some excellent opportunities that I can only attribute to as a sign from the Lord that this is exactly where he wants me.
One of the requirements for my degree was participating in an internship. Most students at my school do their internship locally. I had an opportunity to complete mine with the Government Relations Team at Autism Speaks. I participated in walks all over, and assisted in the background in research needed to pass legislation. I even had the opportunity to work on the Light it Up Blue Campaign. Along the way, I met some incredibly, amazing, inspiring people!
I finished my Bachelors in Science in July 2013 in Human and Community Services. I am currently a Masters of Arts student pursuing a degree in Social and Public Policy with a Concentration in Nonprofit Management. I will graduate in June 2016. My husband and I will be graduating together. I will be completing my Masters and he will be completing his Bachelors.
On this anniversary I have some very mixed emotions. Remembering the trauma that this family experienced still makes me emotional. I had a front row seat. At the same time it also changed my life for different reasons. I now have a renewed spirit in my life and my future is bright. I am not sure where life will take me from here. I do know that I WILL be helping families who are affected by autism. I also know it will be exactly where the Lord places me. Find YOUR purpose. Who knows where life will take you!
Showing posts with label developmental disability. Show all posts
Showing posts with label developmental disability. Show all posts
Wednesday, April 29, 2015
Sunday, December 18, 2011
Autism Parents Version of The Night before Christmas
THIS WAS SOOOO GOOD.. I HAD TO SHARE IT!
Twas the night before an IEP meeting, when all through the house, every creature was stirring and running about. The assessments were filed in a notebook with care, in the hope that we’d get a one on one aide.
My son was having another tantrum in his bed, while visions of ABA therapy danced in my head; And I knew that I was out of my element since I’d never been taught any behavior strategies. When up in the attic arose such a clatter, I sprang from the room to see what was the matter.
Away to the attic I flew like a flash, tore up the ladder and then fell with a crash. I picked myself up, just as the light from above gave luster to my wife holding her stash. And what to my wandering eyes did she have but the behavior analysis thought lost long ago.
With this new data in hand I ran like a flash, scanned the info and sent out an email blast. The email was sent to the IEP team to consider the findings and help manage my son’s needs. My hands were both trembling and flailing about as thoughts of receiving help were brandied about.
Then came a knock at the door from below and I knew in a moment it must by Steve Nick. The advocate we hired had arrived at the door and more rapid than eagles he started pacing the floor. He discussed all our options, and then he whistled and shouted and called out their names.
Now OT, Now PT, Now Speech and Behavior Plan, On Counseling! On Parent Training! On Assistive Technology and Recreation Therapy! To the front of the classroom! To the use of an Aide! Oh there are still more options to be heard.
As we finished discussing his needs, we moved on to possible goal ideas. Then a wink of his eye and a twist of his head, soon gave me to know I had nothing to dread. He then spoke not a word, but went straight to his work and filled up a graph plotting the bell curve. As soon as he finished he turned with a jerk, and laying a finger aside of his nose, and giving a nod he screamed EUREKA and rose.
He sprang to his feet and showed us the data which proved our concerns were more than valid. When everyone was happy and thought we had a good strategy Steve Nick left our house with a bound. As he sprang to his car he gave me a whistle. As he drove out of sight I heard him exclaim a Free Appropriate Public Education for all, and to all a goodnight.
Author Unknown
Author Unknown
Thursday, December 15, 2011
Intuition at Birth
On October 22, 1993, after 8 hours of labor and a difficult pregnancy, my son was finally born. My husband and I did not know in advance whether our child was a boy or a girl, so we had names picked out for each. Caleb Hugh for a boy and Rebecca Norma for a girl.
After delivery of our baby boy Caleb, he was whisked away for the traditional weighing, examining, and wrapping in blankets. My husband then proceeded to go to the payphones to call family to share our good news. He joined me shortly after, and the nurse brought Caleb into the room, followed by our pediatrician. He had a concerned look on his face. We became concerned when the words out of his mouth began with "I have something to tell you about your son..." We could not help but imagining the worst, every parents nightmare when a child is born.
The doctor went on, to explain to us, that Caleb was born with two toes webbed on each foot, two fingers partially webbed together on one hand, and two fingers completely connected on the other hand. "He will need surgery to correct it, but it shouldn't be complicated, and he will be FINE". We were relieved. I was fearing a heart defect and open heart surgery....
I was elated as every mom is when their child finally is here. I picked Caleb up, and held him next to me, in the traditional newborn hold. My husband was sitting on the bed next to me, and we sat there admiring this new life we had brought into the world. We looked closely at his little fingers and toes, especially the ones that were webbed. The bones were fine, it was just skin that needed to be separated. No biggie.
Caleb began to cry. As his mother, my first instinct was to hold him, rock him, talk to him. Assure him that everything was going to be okay. I tried breast feeding him, it made him cry worse. I tried holding and rocking him, he screamed. The nurse helping me in the room, was beside herself as to what to do next. That is when I noticed something significant. He did not want to nurse, or be held. He did not want to be TOUCHED. If I put him in his bed next to mine and NO ONE touched him, the crying stopped. If I picked him up and held him, or tried to feed him, his legs straightened like a board and body stiffened. THAT IS WHEN I KNEW... something was terribly wrong. At that time, I just didn't know what it was.
Needless to say, after two weeks of struggle trying to get him to nurse, we finally went to bottle feeding. Caleb just looked at us as if to say "what took you so long?" Most of his first couple years were a struggle trying to comfort him, getting him to sleep, and trying to keep him from injuring himself. We had to take him out of his crib at 15 months. We would find him stuck between the rails, or laying in the bed, UNDERNEATH the mattress with it laying on top of him. We really thought that sleeping on a mattress on the floor seemed much safer.
Keeping him in bed, being a chronic insomniac, was impossible. My husband and I would finally get him to sleep around 2 am most nights. At the time we did not have a car, and we both had to be at work at 6 am. In order to get to work on time, we had to get up at 4, get two kids ready, packed, dressed, walk 10 blocks to the babysitters house by 5, walk two more blocks and be on the bus at 5:07. This was our daily routine five days a week. We were exhausted. Caleb never slept. We were beside ourselves on what to do. Since his birth, I had this lingering nag inside me, that something wasn't quite right.
When Caleb was 2 and was not speaking a word, we became concerned. I took him to the pediatrician and shared my concerns with him. He listened intently. I had a good relationship with him, and not long before this, my daughter Brianna was diagnosed with a speech issue and was receiving therapy at preschool. Genetics on my side of the family was affected with quite a few speech impairments corrected with therapy. I asked him for a speech evaluation, and he complied.
I brought Caleb to the Rochester Hearing and Speech Center, where they did testing on him. Testing included fine and gross motor skills, adaptation skills (ability to do things for himself), cognitive (mental), and speech. After the testing was over, the professionals called us into a large conference room to share the results with us. I thought this was odd. I was expecting the results sent to the doctor, and he would call me.
My husband and I sat at this table with about ten different professionals around the table. it was rather intimidating. That is when my world started to spin. One professional was in charge, and explained the test results to me. Caleb was severely delayed across the board in all five areas. We asked what this meant. Their response was "this is an indication of Pervasive Developmental Disorder". When questioning exactly what that was, and what could be done about it. The lady responded with the words.."I'm sorry, I am NOT allowed to tell you". In my mind, I am thinking...WHAT? You tell me my child has symptoms of this condition then refuse to tell me? She continued.. "You need to see a developmental pediatrician". We scheduled an appointment at Strong Memorial on this date..(a month away). We left frustrated and confused.
We did not have a computer, so I went to the local library to find anything I could find on Pervasive Developmental Disorder. I found out, in the middle of a public library, that the room of professionals believed my son had autism. I broke down in the library, I was overwhelmed. MY HEART WAS BREAKING.
I shifted gears in the only way I knew. I was going to find out everything I could about autism, especially the form they believed my son had. I read magazine articles, took out every book I could find. It was 1996, so the information superhighway was not as it is today. Information on autism especially was scarce. Every book I read, every magazine article I read was outdated, information inaccurate for the time. I just did not know that at the time. Each thing I read depicted the worse case scenario, severe mental retardation, limited functioning, and basically hopeless. I fell into depression, suffering an emotional agony that few can understand. A feeling of helplessness, and hopelessness. An inability to do anything to help the child you brought into this world.
Several weeks later, the developmental pediatrician, Dr. Susan Hyman confirmed the suspicions of the Hearing and Speech Center. When asked about his life, what it would look like, would he be functional, ect...we were answered with an "I don't know". We left with an answer...but yet no answers. But we did in fact have a plan mapped out by Dr. Hyman. That is when our REAL journey began... OUR LIVES CHANGED FOREVER BY AUTISM...
After delivery of our baby boy Caleb, he was whisked away for the traditional weighing, examining, and wrapping in blankets. My husband then proceeded to go to the payphones to call family to share our good news. He joined me shortly after, and the nurse brought Caleb into the room, followed by our pediatrician. He had a concerned look on his face. We became concerned when the words out of his mouth began with "I have something to tell you about your son..." We could not help but imagining the worst, every parents nightmare when a child is born.
The doctor went on, to explain to us, that Caleb was born with two toes webbed on each foot, two fingers partially webbed together on one hand, and two fingers completely connected on the other hand. "He will need surgery to correct it, but it shouldn't be complicated, and he will be FINE". We were relieved. I was fearing a heart defect and open heart surgery....
I was elated as every mom is when their child finally is here. I picked Caleb up, and held him next to me, in the traditional newborn hold. My husband was sitting on the bed next to me, and we sat there admiring this new life we had brought into the world. We looked closely at his little fingers and toes, especially the ones that were webbed. The bones were fine, it was just skin that needed to be separated. No biggie.
Caleb began to cry. As his mother, my first instinct was to hold him, rock him, talk to him. Assure him that everything was going to be okay. I tried breast feeding him, it made him cry worse. I tried holding and rocking him, he screamed. The nurse helping me in the room, was beside herself as to what to do next. That is when I noticed something significant. He did not want to nurse, or be held. He did not want to be TOUCHED. If I put him in his bed next to mine and NO ONE touched him, the crying stopped. If I picked him up and held him, or tried to feed him, his legs straightened like a board and body stiffened. THAT IS WHEN I KNEW... something was terribly wrong. At that time, I just didn't know what it was.
Needless to say, after two weeks of struggle trying to get him to nurse, we finally went to bottle feeding. Caleb just looked at us as if to say "what took you so long?" Most of his first couple years were a struggle trying to comfort him, getting him to sleep, and trying to keep him from injuring himself. We had to take him out of his crib at 15 months. We would find him stuck between the rails, or laying in the bed, UNDERNEATH the mattress with it laying on top of him. We really thought that sleeping on a mattress on the floor seemed much safer.
Keeping him in bed, being a chronic insomniac, was impossible. My husband and I would finally get him to sleep around 2 am most nights. At the time we did not have a car, and we both had to be at work at 6 am. In order to get to work on time, we had to get up at 4, get two kids ready, packed, dressed, walk 10 blocks to the babysitters house by 5, walk two more blocks and be on the bus at 5:07. This was our daily routine five days a week. We were exhausted. Caleb never slept. We were beside ourselves on what to do. Since his birth, I had this lingering nag inside me, that something wasn't quite right.
When Caleb was 2 and was not speaking a word, we became concerned. I took him to the pediatrician and shared my concerns with him. He listened intently. I had a good relationship with him, and not long before this, my daughter Brianna was diagnosed with a speech issue and was receiving therapy at preschool. Genetics on my side of the family was affected with quite a few speech impairments corrected with therapy. I asked him for a speech evaluation, and he complied.
I brought Caleb to the Rochester Hearing and Speech Center, where they did testing on him. Testing included fine and gross motor skills, adaptation skills (ability to do things for himself), cognitive (mental), and speech. After the testing was over, the professionals called us into a large conference room to share the results with us. I thought this was odd. I was expecting the results sent to the doctor, and he would call me.
My husband and I sat at this table with about ten different professionals around the table. it was rather intimidating. That is when my world started to spin. One professional was in charge, and explained the test results to me. Caleb was severely delayed across the board in all five areas. We asked what this meant. Their response was "this is an indication of Pervasive Developmental Disorder". When questioning exactly what that was, and what could be done about it. The lady responded with the words.."I'm sorry, I am NOT allowed to tell you". In my mind, I am thinking...WHAT? You tell me my child has symptoms of this condition then refuse to tell me? She continued.. "You need to see a developmental pediatrician". We scheduled an appointment at Strong Memorial on this date..(a month away). We left frustrated and confused.
We did not have a computer, so I went to the local library to find anything I could find on Pervasive Developmental Disorder. I found out, in the middle of a public library, that the room of professionals believed my son had autism. I broke down in the library, I was overwhelmed. MY HEART WAS BREAKING.
I shifted gears in the only way I knew. I was going to find out everything I could about autism, especially the form they believed my son had. I read magazine articles, took out every book I could find. It was 1996, so the information superhighway was not as it is today. Information on autism especially was scarce. Every book I read, every magazine article I read was outdated, information inaccurate for the time. I just did not know that at the time. Each thing I read depicted the worse case scenario, severe mental retardation, limited functioning, and basically hopeless. I fell into depression, suffering an emotional agony that few can understand. A feeling of helplessness, and hopelessness. An inability to do anything to help the child you brought into this world.
Several weeks later, the developmental pediatrician, Dr. Susan Hyman confirmed the suspicions of the Hearing and Speech Center. When asked about his life, what it would look like, would he be functional, ect...we were answered with an "I don't know". We left with an answer...but yet no answers. But we did in fact have a plan mapped out by Dr. Hyman. That is when our REAL journey began... OUR LIVES CHANGED FOREVER BY AUTISM...
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