I have encountered family and friends that try their best to understand the world of autism in which too many of us live in. I struggle on how to appropriately describe this experience of what I refer to as "the world of autism". I took a class a few years back and a poem was used in this class to describe life as a special needs parent. I find it so appropriate for those that struggle to understand. The poem is called "Welcome to Holland" by Emily Perle Kingsley. I am posting it today in case there are some of you are trying to grasp this world with a new diagnosis or attempting to explain it so someone else.
WELCOME TO HOLLAND
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Showing posts with label special education. Show all posts
Showing posts with label special education. Show all posts
Thursday, October 16, 2014
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, December 7, 2013
Speak up and reach out!
In 1996 when my son received his autism diagnosis the information superhighway was not as it is today. My only recourse in learning about autism was the local library. I would search for the information and only find information dating in the 1980's. I would scoop up everything I could find.
Unfortunately, much of this information was inaccurate and outdated. It depicted the worse case scenarios such as severe mental retardation, never being able to live alone, ect.... A parents worse nightmare. When in fact this is not always the case. The outcome for a child on the spectrum is directly related to several factors. The first factor is an accurate diagnosis, and a treatment plan. My son Caleb's treatment was outlined specifically by his developmental pediatrician who diagnosed him. The second factor is appropriate class placement. As a new parent dealing with special education I had no idea what an appropriate placement was. I was LOST. But I learned.
After the initial shock wore off about his diagnosis we applied for Social Security for my son. I could not work due to the demands of raising a child on the spectrum. Once we were approved, I approached the school about what the best thing I could get for my son to help him. Ipads did not exist then. The school suggested us buying a computer. So we did. Caleb was four and we purchased digital books on CD and he would sit and watch the computer read the book to him. The CD would light up the words as the voice read the book to him. He loved it. I truly believe that is how my son learned to read. He could read long before he could speak.
When the day was done, and Caleb was in bed. I would use the computer to "surf". One day I was scrolling chat rooms on AOL and ran across a chat room for autism. I entered the room and my life was never the same. Inside this chat room parents of children on the spectrum shared issues they were experiencing. Other parents would chime in and discuss what worked for them to help with that particular issue. This was a godsend to me. I had someone to talk to that was also dealing with autism. Over the course of 17 years of raising a child on the spectrum, this same group of people are still in my life as a means of support.
One of the people in the room was not a parent but an adult who was affected by autism. His name is Stephen Shore. He was so supportive to me from day one. Over the course of 17 years, Stephen has always been a source of information and advice in helping with various issues from classroom placement and services to independent living. Stephen Shore is now a professor at Aldelphi University and author. He wrote his most recent book "Autism for Dummies" which is a perfect reference for those with a new diagnosis and do not know where to begin. Stephen is also an World Renowned Autism Expert doing conferences all over the world on various subjects relating to autism. I am blessed to be able to call him my friend.
It is common for autism parents to retreat into a world of their own similar to their child with autism. It is not healthy. It is critical for the well being of the parent to socialize and interact with those that are also struggling with the same issues. Autism is a big part of your life now. Find other parents dealing with it too. You will be shocked at how it helps!
Now that the information superhighway is very effective there are numerous avenues one can take to interact with parents who are also raising a child on the spectrum. My favorite site is MyAutismTeam. It is parents sharing on a web site about how their day was, and what issues they are dealing with on that day and even how they are dealing with life at that moment. It is a fantastic opportunity for a parent feeling shut in and alone to interact. I also attend a support group designed for parents with adult children with autism.
Do not be ashamed or fail to disclose your child's autism. It needs to be said (even though its difficult to say). I am part of a large church that serves over 450 children. Some of those children are on the spectrum, yet the parents do not disclose their childs autism. Anyone who comes in contact with your child needs to be informed! Especially the pastor of your church.
Autism is not something to be ashamed of. Do not feel like you are burdening other people by sharing information with them. Sometimes the Lord places us in situations where we need others to help carry our burden from time to time. With the autism rates rising the way they are, there are more children out there than you are aware of. Parents should not feel isolated and alone.
Speak out, and reach out. It is healthy for the mind and spirit. You will be shocked at what it does for the soul when you get to the point where you are helping carry the burden for someone else. It is a true blessing!!!
Unfortunately, much of this information was inaccurate and outdated. It depicted the worse case scenarios such as severe mental retardation, never being able to live alone, ect.... A parents worse nightmare. When in fact this is not always the case. The outcome for a child on the spectrum is directly related to several factors. The first factor is an accurate diagnosis, and a treatment plan. My son Caleb's treatment was outlined specifically by his developmental pediatrician who diagnosed him. The second factor is appropriate class placement. As a new parent dealing with special education I had no idea what an appropriate placement was. I was LOST. But I learned.
After the initial shock wore off about his diagnosis we applied for Social Security for my son. I could not work due to the demands of raising a child on the spectrum. Once we were approved, I approached the school about what the best thing I could get for my son to help him. Ipads did not exist then. The school suggested us buying a computer. So we did. Caleb was four and we purchased digital books on CD and he would sit and watch the computer read the book to him. The CD would light up the words as the voice read the book to him. He loved it. I truly believe that is how my son learned to read. He could read long before he could speak.
When the day was done, and Caleb was in bed. I would use the computer to "surf". One day I was scrolling chat rooms on AOL and ran across a chat room for autism. I entered the room and my life was never the same. Inside this chat room parents of children on the spectrum shared issues they were experiencing. Other parents would chime in and discuss what worked for them to help with that particular issue. This was a godsend to me. I had someone to talk to that was also dealing with autism. Over the course of 17 years of raising a child on the spectrum, this same group of people are still in my life as a means of support.
One of the people in the room was not a parent but an adult who was affected by autism. His name is Stephen Shore. He was so supportive to me from day one. Over the course of 17 years, Stephen has always been a source of information and advice in helping with various issues from classroom placement and services to independent living. Stephen Shore is now a professor at Aldelphi University and author. He wrote his most recent book "Autism for Dummies" which is a perfect reference for those with a new diagnosis and do not know where to begin. Stephen is also an World Renowned Autism Expert doing conferences all over the world on various subjects relating to autism. I am blessed to be able to call him my friend.
It is common for autism parents to retreat into a world of their own similar to their child with autism. It is not healthy. It is critical for the well being of the parent to socialize and interact with those that are also struggling with the same issues. Autism is a big part of your life now. Find other parents dealing with it too. You will be shocked at how it helps!
Now that the information superhighway is very effective there are numerous avenues one can take to interact with parents who are also raising a child on the spectrum. My favorite site is MyAutismTeam. It is parents sharing on a web site about how their day was, and what issues they are dealing with on that day and even how they are dealing with life at that moment. It is a fantastic opportunity for a parent feeling shut in and alone to interact. I also attend a support group designed for parents with adult children with autism.
Do not be ashamed or fail to disclose your child's autism. It needs to be said (even though its difficult to say). I am part of a large church that serves over 450 children. Some of those children are on the spectrum, yet the parents do not disclose their childs autism. Anyone who comes in contact with your child needs to be informed! Especially the pastor of your church.
Autism is not something to be ashamed of. Do not feel like you are burdening other people by sharing information with them. Sometimes the Lord places us in situations where we need others to help carry our burden from time to time. With the autism rates rising the way they are, there are more children out there than you are aware of. Parents should not feel isolated and alone.
Speak out, and reach out. It is healthy for the mind and spirit. You will be shocked at what it does for the soul when you get to the point where you are helping carry the burden for someone else. It is a true blessing!!!
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....
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.
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