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 autism spectrum disorder. Show all posts
Showing posts with label autism spectrum disorder. Show all posts
Wednesday, April 29, 2015
Tuesday, September 9, 2014
Weighted vests
Caleb has always sought out different sensory items as he was developing. If we happened to be at a park, instead of playing like his other peers he would sit down on the grass and spend time rubbing his hands across its blades. For quite some time we thought it was odd. We would be in wonder at what he would do next. Once he grew tired of the grass, he would go to the nearest tree and just rub his hands up and down across the bark. When we left the park each time he was much calmer and more peaceful than when we had arrived. Caleb had been a hyperactive child since birth (to the extreme of needing Ritalin at two and half in an effort to ensure his personal safety).
Sensory issues was one of the many things my husband and I discussed as we sat across the table at his annual IEP meeting (to determine what services were needed). The team agreed that a trial period of a weighted vest would be appropriate. The trial period would include Caleb wearing a vest with built in weights. It is been long established that deep pressure helps with "reorganizing sensory stimuli" in autistic individuals as well as those with a sensory disorder. The rule of thumb in using the vest is 20 minutes on, 20 minutes off. This should be overseen by a certified occupational therapist. Twenty minutes is not a lot of time. Many times the teacher, or aide will remove the vest. The occupational therapist would return to put it back on after the allotted time off. What they do NOT tell you is the dangers of NOT removing it in the designated time.
One day, I forgot to give Caleb his medication before going to school so I hopped in the car to scoot over to the school and give it to him. I signed in at the school and was directed towards his classroom. When I joined Caleb in the classroom I was distraught by what I saw. My hyperactive, happy go lucky child was lethargic and had deep circles around his eyes. I became suddenly very concerned. I asked the staff what time the vest was put on, and what time it needed to come off. Apparently the teacher and aide became distracted by the flow of the classroom (which had all special needs in attendance). The vest was 25 minutes late coming off. I immediately took the vest off and scooted him to the nurses office.
I was then informed with the dangers of these vests when not removed on time. Apparently, when the vest is not used properly it can cause an extreme drop in the bodies blood pressure. Caleb's blood pressure was much lower than normal. We sat in the nurses office for quite some time redoing his blood pressure every five minutes to ensure that it would return to normal in a decent amount of time. Then I took him home for the day.
From that point on I refused to allow that method of sensory therapy to be used on my son. In addition to taking Ritalin for hyperactivity my son was also on Clonidine as well to curb his hyperactivity. Clonidine is used in adults to regulate blood pressure. I am sure that the Clonidine in combination with the vest contributed to the event that happened. I was however, informed by my son's developmental pediatrician that this could happen without the medication.
This event caused me to ponder. What would have happened to my son if I had NOT gone there that day? Would the staff notice before he passed out? Was the staff even informed about the dangers of using these vests and how critical it was to be removed on time? If I was never informed how do I know they were?
I have seen parents with children like my son buy, use, and even make their own weighted vests and blankets. I cringe at the thought of that very day when my sons physical health was endangered by using the very things other parents are striving to use. I was never informed of the dangers and wonder how many out there live under the assumption that these items are good for our children. How many of them have never been informed of their dangers?
I am hoping this post is informative and helps get the word out. There is a real benefit from using these items if used EXACTLY as directed. Please know that if you have a houseful of kids, work from home, or have any other major distraction that could deter you from removing these items on time DO NOT USE THEM! I pray that there are no children harmed by distractions that life so often gives all of us.
I went to using the personal massager that worked better than the vests. For more information on the use of the massagers please refer to my post on sensory therapy. In all things be informed. After that incident I became more informed than the FBI when it comes to therapies used for my child. I hope you will as well.
https://www.facebook.com/groups/1427560947494406/permalink/1478636342386866/
Sensory issues was one of the many things my husband and I discussed as we sat across the table at his annual IEP meeting (to determine what services were needed). The team agreed that a trial period of a weighted vest would be appropriate. The trial period would include Caleb wearing a vest with built in weights. It is been long established that deep pressure helps with "reorganizing sensory stimuli" in autistic individuals as well as those with a sensory disorder. The rule of thumb in using the vest is 20 minutes on, 20 minutes off. This should be overseen by a certified occupational therapist. Twenty minutes is not a lot of time. Many times the teacher, or aide will remove the vest. The occupational therapist would return to put it back on after the allotted time off. What they do NOT tell you is the dangers of NOT removing it in the designated time.
One day, I forgot to give Caleb his medication before going to school so I hopped in the car to scoot over to the school and give it to him. I signed in at the school and was directed towards his classroom. When I joined Caleb in the classroom I was distraught by what I saw. My hyperactive, happy go lucky child was lethargic and had deep circles around his eyes. I became suddenly very concerned. I asked the staff what time the vest was put on, and what time it needed to come off. Apparently the teacher and aide became distracted by the flow of the classroom (which had all special needs in attendance). The vest was 25 minutes late coming off. I immediately took the vest off and scooted him to the nurses office.
I was then informed with the dangers of these vests when not removed on time. Apparently, when the vest is not used properly it can cause an extreme drop in the bodies blood pressure. Caleb's blood pressure was much lower than normal. We sat in the nurses office for quite some time redoing his blood pressure every five minutes to ensure that it would return to normal in a decent amount of time. Then I took him home for the day.
From that point on I refused to allow that method of sensory therapy to be used on my son. In addition to taking Ritalin for hyperactivity my son was also on Clonidine as well to curb his hyperactivity. Clonidine is used in adults to regulate blood pressure. I am sure that the Clonidine in combination with the vest contributed to the event that happened. I was however, informed by my son's developmental pediatrician that this could happen without the medication.
This event caused me to ponder. What would have happened to my son if I had NOT gone there that day? Would the staff notice before he passed out? Was the staff even informed about the dangers of using these vests and how critical it was to be removed on time? If I was never informed how do I know they were?
I have seen parents with children like my son buy, use, and even make their own weighted vests and blankets. I cringe at the thought of that very day when my sons physical health was endangered by using the very things other parents are striving to use. I was never informed of the dangers and wonder how many out there live under the assumption that these items are good for our children. How many of them have never been informed of their dangers?
I am hoping this post is informative and helps get the word out. There is a real benefit from using these items if used EXACTLY as directed. Please know that if you have a houseful of kids, work from home, or have any other major distraction that could deter you from removing these items on time DO NOT USE THEM! I pray that there are no children harmed by distractions that life so often gives all of us.
I went to using the personal massager that worked better than the vests. For more information on the use of the massagers please refer to my post on sensory therapy. In all things be informed. After that incident I became more informed than the FBI when it comes to therapies used for my child. I hope you will as well.
https://www.facebook.com/groups/1427560947494406/permalink/1478636342386866/
Saturday, January 7, 2012
Caleb and his Ice Cream....
My husband and I stood in the developmental pediatricians office.. STUNNED and Overwhelmed. We had so many questions, and few answers. Suddenly everything was in slow motion. I could hear the words being said to us, but for some reason it didn't seem real. It was as if I was stuck in my own personal nightmare.
My husband and I were at this appointment with a representative from the Early Intervention Program. The developmental pediatrician started talking straight to this representative, in a bold, and insistent way. Dr. Hyman started outlining in great detail all the services she was prescribing for Caleb, and that he needed a classroom NOW, and this lady had exactly one week to find one for him, or she was going to answer to HER.
As she was describing these treatments, I quickly became lost in the conversation. Dr. Hyman started rattling off abbreviations that I had never heard before. She wanted OT, PT, Speech Therapists in the room with him at all times, a 8:1:2 classroom with 1:1 aide, sensory integration therapy...my mind was SPINNING... I had no clue what any of this was, and did not want to interrupt the discussion with the intervention worker to find out. I WAS SO LOST, CONFUSED AND SCARED....
As we were leaving the developmental pediatricians office, the intervention worker informs us of the next step. Observing and choosing a classroom. She proceeded to tell us that we would have appointments set up to go visit various places throughout the city, and we would pick the one we thought Caleb fit into best. All I could think of was....What exactly do we look for? I had never done this before! How do we know which class is the best one for him? Shouldn't someone help us with this? I was praying for some kind of sign, to signal me which one was the right one. I came to know later, exactly how crucial appropriate classroom placement was.
My husband and I went to three classrooms before we saw the birth to three class at Monroe #2 Boces Program. (We were instructed to take Caleb to each facility and observe how he responded in each environment). We were running out of options and would have to make a decision soon. We had not seen anything extraordinary up to this point. NO SIGN....
We first enter the classroom, and we were greeted politely by the teacher, and she introduced herself, and squatted down to the floor to be eye level with Caleb and greeted him with a hello. As the teacher was telling us details about the classroom the aide was with the other seven children and started gathering them around a table. She then raised her voice slightly and said:
"CALEB! We are going to have ice cream for a snack, would you like some?" HE DID NOT RESPOND.. NO REACTION at all. At that time, he was nonverbal, and Caleb did not acknowledge the presence of anyone he was not intimately associated with. The reaction was not a surprise to us.
The aide, when not getting a reaction from him then said "CALEB... if you would like some ice cream, you HAVE to sit at the table with everyone else." NO RESPONSE. NO REACTION...
The aide, then set a bowl of chocolate ice cream with a plastic spoon in front of an empty chair. "Here you go Caleb, Here is YOUR SNACK, but you HAVE to sit at the table." Caleb stood there, no reaction. Caleb then proceeded to wander over to the table, sat down, and had his snack. WE HAD FOUND THE PERFECT PLACE. THIS WAS IT!!! THIS WAS OUR SIGN....
We called the Early Intervention worker, informed her of our classroom choice, and she set up transportation for the following Monday. Caleb was only three at the time, and would start school doing half days, and travel in a small bus with a car seat. I was dreading putting my baby on a bus, and was not looking forward to it.
The first day of school was always an emotional one, but he was only THREE..and so little. Just the thought of it, would make me start to get emotional..... This was a new world now. Our life FOREVER CHANGED BY AUTISM....
My husband and I were at this appointment with a representative from the Early Intervention Program. The developmental pediatrician started talking straight to this representative, in a bold, and insistent way. Dr. Hyman started outlining in great detail all the services she was prescribing for Caleb, and that he needed a classroom NOW, and this lady had exactly one week to find one for him, or she was going to answer to HER.
As she was describing these treatments, I quickly became lost in the conversation. Dr. Hyman started rattling off abbreviations that I had never heard before. She wanted OT, PT, Speech Therapists in the room with him at all times, a 8:1:2 classroom with 1:1 aide, sensory integration therapy...my mind was SPINNING... I had no clue what any of this was, and did not want to interrupt the discussion with the intervention worker to find out. I WAS SO LOST, CONFUSED AND SCARED....
As we were leaving the developmental pediatricians office, the intervention worker informs us of the next step. Observing and choosing a classroom. She proceeded to tell us that we would have appointments set up to go visit various places throughout the city, and we would pick the one we thought Caleb fit into best. All I could think of was....What exactly do we look for? I had never done this before! How do we know which class is the best one for him? Shouldn't someone help us with this? I was praying for some kind of sign, to signal me which one was the right one. I came to know later, exactly how crucial appropriate classroom placement was.
My husband and I went to three classrooms before we saw the birth to three class at Monroe #2 Boces Program. (We were instructed to take Caleb to each facility and observe how he responded in each environment). We were running out of options and would have to make a decision soon. We had not seen anything extraordinary up to this point. NO SIGN....
We first enter the classroom, and we were greeted politely by the teacher, and she introduced herself, and squatted down to the floor to be eye level with Caleb and greeted him with a hello. As the teacher was telling us details about the classroom the aide was with the other seven children and started gathering them around a table. She then raised her voice slightly and said:
"CALEB! We are going to have ice cream for a snack, would you like some?" HE DID NOT RESPOND.. NO REACTION at all. At that time, he was nonverbal, and Caleb did not acknowledge the presence of anyone he was not intimately associated with. The reaction was not a surprise to us.
The aide, when not getting a reaction from him then said "CALEB... if you would like some ice cream, you HAVE to sit at the table with everyone else." NO RESPONSE. NO REACTION...
The aide, then set a bowl of chocolate ice cream with a plastic spoon in front of an empty chair. "Here you go Caleb, Here is YOUR SNACK, but you HAVE to sit at the table." Caleb stood there, no reaction. Caleb then proceeded to wander over to the table, sat down, and had his snack. WE HAD FOUND THE PERFECT PLACE. THIS WAS IT!!! THIS WAS OUR SIGN....
We called the Early Intervention worker, informed her of our classroom choice, and she set up transportation for the following Monday. Caleb was only three at the time, and would start school doing half days, and travel in a small bus with a car seat. I was dreading putting my baby on a bus, and was not looking forward to it.
The first day of school was always an emotional one, but he was only THREE..and so little. Just the thought of it, would make me start to get emotional..... This was a new world now. Our life FOREVER CHANGED BY AUTISM....
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