Although there are no two autistic individuals who are exactly the same, a person who spends a significant amount of time helping them navigate the world might start to see similarities. I am in no way an expert, but what I have learned from my experiences may be of help to someone who is looking for some further understanding.
Something small: People with Autism have a difficult time going into new rooms. Even more specifically, going through a door frame into said room. I feel this is from anxiety. They are unsure of what to expect in the new room and/or what kind of energy might be in there. If the energy is too overwhelming, the child will be reluctant to go in. This energy could be the kind when children have just gotten into trouble by the teacher, so they are quiet and uncomfortable; or maybe there is a substitute and the class is hyper and loud. In my experience, it has been, more than lights or sound effecting the children. I have found that giving the child the power to enter a room at their own cautious pace is much more comforting to them. Let them know you are there....right there by them for comfort and support if need be, but let them open the door, then you hold it while they venture inside the room. They may look to you for reassurance, and you can tell them it is OK This technique works much better than opening a door and walking through it yourself while holding their hand...dragging them through at your own pace. Even if this hasn't seemed to be a problem, the more and more rooms they are expected to enter and leave in a short amount of time could lead to a nasty meltdown when the child can no longer handle the anxiety of it all.
This also ties into routine, as I mentioned some about in a previous post. Children with Autism like to do things the same way every time they are presented with a situation because it eases their anxiety. They like to enter a building through the same door every time, and take the same route to their destination every time. Some may argue that doing too much routine will give the children a false sense of security so that they will not be able to handle change when it occurs. I would have to disagree. In my experience, the more comforted the child is by the routine, because it eases their anxiety, they can better handle unforeseen changes.
Example: I learned quickly when taking my autistic son to the grocery store, that he would meltdown and scream when we did not take the same route through the store to get our groceries each time. I had to start near the door and weave my way through each and every aisle, making my way to the back of the store where the cash registers were so we could check out and go home. Forgot the ketchup?? We went home without. The meltdown from going back towards where we had started would be so traumatic, it was definitely not worth it.
I took him to the grocery store with me twice a month and after he started to feel comfortable in our journey through the store, he became less anxious and I was able to try going back for a forgotten item. I would sing his favorite song or do silly swerves with the cart to distract him. Soon, he became ok with little changes in his routine. Now, at 15, he will follow me around wherever, but if we go "in circles" too many times, he will whine and tell me he is getting dizzy.
I suspect these children have an instinctive sense of direction. I think circling can be calming on their terms....frightening when they do not feel in control of it. It's almost like they have a map of point A and point B and if they started at A they can't concentrate or be calm until they have reached point B.
A person who is helping an autistic individual has to be calm, reassuring and always listening to their energies as well. They can tell when you are agitated, worried, busy.....and they will use it to their advantage. They will take their cues from you also to help them deal with the world.
Sunday, March 24, 2013
Friday, March 15, 2013
The "Outgrowing" Propaganda
The new autism information circling around Medscape is calling a "take-back" to the mainstream medical community's previously sedimentary definition of Autism.
What was once thought of as a life-long sentence, has a new definition.
If you are a biomed Mom or Dad, you may be excited at this point, thinking that maybe....just maybe....the battle we have fought for our children with our blood, sweat, tears is being acknowledged at long last!
Instead, Medscape, a resource available to doctors and nurses, is now stating that children simply "outgrow" autism.
I remember the day in 2000, when my son had barely turned two, and the neurologist, after reviewing notes from a speech therapist, sat me down in his office. After a few short minutes of observing my child, he told me he had Autism. He told me it wasn't my or my husband's fault...nothing we did caused it. He told us to continue Early Intervention, even though there wasn't much data on how much that would help. He told us to test our youngest child, a few weeks old, for Fragile X to see if he would have Autism, too. He shook my hand and said my husband could call him if he had any questions....and we should start saving for Tristen's long-term care in a specialized facility.
Everything I read at first told me there was no hope and no cure. Autism just happens to one in ten thousand children and you have to accept it.
But my child was sick. He was constantly ill and had problems eating since birth. No doctor or nurse would take us seriously...they only saw his Autism.
"Autistic kids are just constipated."
"Autistic kids get sick all the time....stop worrying so much."
"You are being overprotective because you feel guilty."
I stopped reading articles about hopeless futures and I started reading about illnesses. I started to read everything I could find on the immune system so when I went back to the doctor with another 105 degree fever, I would have something to suggest to him....maybe this....or this....
I heard rumors of recovery. Recovery of Autism. False hope? Maybe....I wasn't sure. But I wasn't worried about recovering from from Autism, I just wanted him to be healthy and live a happy, pain-free life. As I kept reading about illnesses, and sick children with autism, it became very clear I wasn't alone and that healing his sick little body would actually help lessen the severity of his Autism. It had to be worth a shot.
When I approached our new pediatrician with this information, I brought in books and links to websites. I was so excited to show her I had found the way to heal him from his undiagnosed illness that plagued him every month. Instead of rejoicing with me in this newly found information, she looked at me with pity.
"I hate to see you waste your time and money on things like this. I've known people in the past who have gone down this path to only see no results or progress. You should proceed with caution."
That was the third and last time we saw that doctor.
We have spent the last 5 years spending every last cent along with every last bit of energy to keep my autistic son healthy. It only took a month after his first visit with a Biomedical doctor to stop his cyclical fevers. And as his health improved, so did the severity of his Autism Spectrum Disorder.
Mainstream Medicine did not acknowledge this. They said it was impossible and a ploy to exploit grieving parents.
So, now my Tristen is not the only one getting better. People across the world are proclaiming recovery. So, what do the docs say now?? Oh, it wasn't anything YOU did......they were going to outgrow it all along!
Well, I am calling their BS! They figured out a loophole to explain the progress and recovery of hundreds of autistic children so they wouldn't have to admit they should have been listening to parents and treating their children like real patients, instead of handicapped children that are no use to the world and better off in an institution.
The DSM-V used to diagnose Autism Spectrum Disorders has changed the criteria for labeling someone Autistic. This will drastically decrease the number of children diagnosed with an ASD, yet they will still remain under different names. It just happens to tie in perfectly to the new claim, as they will no doubt soon advertise a new study where the rates have declined, and those who where Autistic no longer are, thus proving their claim that they just outgrew it.
My son's brain was damaged by the Hepatitis B vaccine given to him at two days old. They gave me, a nursing mother, the MMR the same day. He was never the same after. My son will not grow out of his brain damage. Whether the DSM-V decides to classify him as Autistic anymore, or if they call him a purple dinosaur.....he will still be damaged, and he will still continue to make gains towards a better life, because I won't stop spending my every waking hour trying to help him succeed at life.
But don't you dare tell me, that I could have spent the past 15 years on the couch eating bon-bons, letting him spin in circles, making high-pitched screetches and drinking milk out of the jug by the gallons, and just SAT there and WATCHED as he MAGICALLY GREW OUT OF IT!
Society has lost their faith in mainstream medicine. They have been ignored for too long. This claim is another nail in the coffin. If doctors would have done their jobs in the first place, none of this would be an issue. First, DO NO HARM. The oath doesn't mention screwing up and then offering a "take-back".
What was once thought of as a life-long sentence, has a new definition.
If you are a biomed Mom or Dad, you may be excited at this point, thinking that maybe....just maybe....the battle we have fought for our children with our blood, sweat, tears is being acknowledged at long last!
Instead, Medscape, a resource available to doctors and nurses, is now stating that children simply "outgrow" autism.
I remember the day in 2000, when my son had barely turned two, and the neurologist, after reviewing notes from a speech therapist, sat me down in his office. After a few short minutes of observing my child, he told me he had Autism. He told me it wasn't my or my husband's fault...nothing we did caused it. He told us to continue Early Intervention, even though there wasn't much data on how much that would help. He told us to test our youngest child, a few weeks old, for Fragile X to see if he would have Autism, too. He shook my hand and said my husband could call him if he had any questions....and we should start saving for Tristen's long-term care in a specialized facility.
Everything I read at first told me there was no hope and no cure. Autism just happens to one in ten thousand children and you have to accept it.
But my child was sick. He was constantly ill and had problems eating since birth. No doctor or nurse would take us seriously...they only saw his Autism.
"Autistic kids are just constipated."
"Autistic kids get sick all the time....stop worrying so much."
"You are being overprotective because you feel guilty."
I stopped reading articles about hopeless futures and I started reading about illnesses. I started to read everything I could find on the immune system so when I went back to the doctor with another 105 degree fever, I would have something to suggest to him....maybe this....or this....
I heard rumors of recovery. Recovery of Autism. False hope? Maybe....I wasn't sure. But I wasn't worried about recovering from from Autism, I just wanted him to be healthy and live a happy, pain-free life. As I kept reading about illnesses, and sick children with autism, it became very clear I wasn't alone and that healing his sick little body would actually help lessen the severity of his Autism. It had to be worth a shot.
When I approached our new pediatrician with this information, I brought in books and links to websites. I was so excited to show her I had found the way to heal him from his undiagnosed illness that plagued him every month. Instead of rejoicing with me in this newly found information, she looked at me with pity.
"I hate to see you waste your time and money on things like this. I've known people in the past who have gone down this path to only see no results or progress. You should proceed with caution."
That was the third and last time we saw that doctor.
We have spent the last 5 years spending every last cent along with every last bit of energy to keep my autistic son healthy. It only took a month after his first visit with a Biomedical doctor to stop his cyclical fevers. And as his health improved, so did the severity of his Autism Spectrum Disorder.
Mainstream Medicine did not acknowledge this. They said it was impossible and a ploy to exploit grieving parents.
So, now my Tristen is not the only one getting better. People across the world are proclaiming recovery. So, what do the docs say now?? Oh, it wasn't anything YOU did......they were going to outgrow it all along!
Well, I am calling their BS! They figured out a loophole to explain the progress and recovery of hundreds of autistic children so they wouldn't have to admit they should have been listening to parents and treating their children like real patients, instead of handicapped children that are no use to the world and better off in an institution.
The DSM-V used to diagnose Autism Spectrum Disorders has changed the criteria for labeling someone Autistic. This will drastically decrease the number of children diagnosed with an ASD, yet they will still remain under different names. It just happens to tie in perfectly to the new claim, as they will no doubt soon advertise a new study where the rates have declined, and those who where Autistic no longer are, thus proving their claim that they just outgrew it.
My son's brain was damaged by the Hepatitis B vaccine given to him at two days old. They gave me, a nursing mother, the MMR the same day. He was never the same after. My son will not grow out of his brain damage. Whether the DSM-V decides to classify him as Autistic anymore, or if they call him a purple dinosaur.....he will still be damaged, and he will still continue to make gains towards a better life, because I won't stop spending my every waking hour trying to help him succeed at life.
But don't you dare tell me, that I could have spent the past 15 years on the couch eating bon-bons, letting him spin in circles, making high-pitched screetches and drinking milk out of the jug by the gallons, and just SAT there and WATCHED as he MAGICALLY GREW OUT OF IT!
Society has lost their faith in mainstream medicine. They have been ignored for too long. This claim is another nail in the coffin. If doctors would have done their jobs in the first place, none of this would be an issue. First, DO NO HARM. The oath doesn't mention screwing up and then offering a "take-back".
Thursday, March 7, 2013
The Schedule
If you are an autism parent, you know about the schedule. You live your life by it...heck you plan your own potty breaks by it!! Schedule is EXTREMELY important to children on the spectrum. They tend to have anxiety and knowing what is coming next is necessary for them to calm down enough to focus on what is going on at the moment.
I am surprised by how many professionals who work with children with autism are unaware of it's importance.
In my experience, I have found that not only the knowledge of future expectations ease anxiety, but a predictable sequence is often as comforting as a squeeze machine or moon-sand. Routine. It's calming.
I recall an experience when potty-training a child who loved to be spun in the air after going potty. We would go through the same dialogue each time and end with a swing around the bathroom, pants down and all. My co-workers were disgusted that he might drip some pee somewhere...or worse, on us. I really wasn't worried about that...it was about the calming, comforting routine to set into place a vital life skill.
Also working with students, I have seen them try to establish a pattern in their work to get the right answer, rather than remembering the right answer. For example, you ask a child to choose their name from a board full of 15 or so names, At first they just guess, pointing randomly until they happen upon their name and get their reward. But instead of reinforcing their correct choice of name, the child tries again each time to remember the exact pattern of names to choose...or times to point on the board, to achieve the desired reward. In other words, instead of remembering "Tristen" is what I push when I'm asked to point to my name, the child tries to mimic all events up to the ending reward, such as, I put my heals down, my teacher talks, I point to Max, then I look at my teacher and she talks, and I point to Sam, and I look at my teacher and she talks and I point to Tom and I look at my teacher and she talks and I point to Tim and I look at my teacher and she talks and I point to Tristen and THEN I get my reward.
It makes it difficult to teach a child to recognize their name, especially when their printed name has no meaning to them. Is that mine? If that question is in the child's mind, it doesn't have the same meaning. Is that mine is more like, Do I want that? If I want it, then it's mine.
The children with autism I have had the privilege of learning with also do not like waiting. ( Who does? ) They need their schedule filled with as little "waiting" time as possible. There is always something to fill in between tasks that are enjoyable for them. But if there is too much time for any one given thing....besides maybe TV.....they get bored and frustrated wondering when they can get on with their day. The day should also be made of relatively short tasks divided up by sensory breaks. We can relate! Don't our days go by faster at work when we are busy? Most individuals prefer that to a day where there wasn't much to do and the day slowly dragged on.
Last Example:
If a child with autism is used to his afternoon routine, and is given too much unstructured time, he may get impatient and want to get the day over with and go home already. This may happen "just-because" the child wants to go home to watch Sesame Street rather than be at school also, you might not know for sure, but the point is it happens. He/she decides they want to go home. But, the child knows they have a certain routine to go through to before going home. They start to tantrum to get to the next task.
This is where schedule, routine, visual aids, and possibly timers are crucial. It also takes a very calm and firm individual to carry out the tasks at hand.
No matter how fast you were to get through the end of the day tasks, the child still cannot go home. If he is upset now, he will continue to be upset the rest of the afternoon up until the bus comes to take him home. The only thing accomplished by rushing through the tasks is to reinforce the idea that if I whine or tantrum I make people scurry around to give me whatever I want.
Filling a child's day with "jobs" or expectations actually results in less behaviors from being bored and trying to manipulate.
Sometimes you cannot help when a routine is interrupted....there are plenty of unpredictable things that happen in life. So, we should be even more vigilant in keeping a routine to keep them as calm and comfortable as possible so they can better handle the changes. Whether it's a swing around the bathroom, or singing a favorite song as we walk down the hallway or just remembering to follow the patter of "snack, bathroom, bus".......it will make ALL the difference in the success of the child.
I am surprised by how many professionals who work with children with autism are unaware of it's importance.
In my experience, I have found that not only the knowledge of future expectations ease anxiety, but a predictable sequence is often as comforting as a squeeze machine or moon-sand. Routine. It's calming.
I recall an experience when potty-training a child who loved to be spun in the air after going potty. We would go through the same dialogue each time and end with a swing around the bathroom, pants down and all. My co-workers were disgusted that he might drip some pee somewhere...or worse, on us. I really wasn't worried about that...it was about the calming, comforting routine to set into place a vital life skill.
Also working with students, I have seen them try to establish a pattern in their work to get the right answer, rather than remembering the right answer. For example, you ask a child to choose their name from a board full of 15 or so names, At first they just guess, pointing randomly until they happen upon their name and get their reward. But instead of reinforcing their correct choice of name, the child tries again each time to remember the exact pattern of names to choose...or times to point on the board, to achieve the desired reward. In other words, instead of remembering "Tristen" is what I push when I'm asked to point to my name, the child tries to mimic all events up to the ending reward, such as, I put my heals down, my teacher talks, I point to Max, then I look at my teacher and she talks, and I point to Sam, and I look at my teacher and she talks and I point to Tom and I look at my teacher and she talks and I point to Tim and I look at my teacher and she talks and I point to Tristen and THEN I get my reward.
It makes it difficult to teach a child to recognize their name, especially when their printed name has no meaning to them. Is that mine? If that question is in the child's mind, it doesn't have the same meaning. Is that mine is more like, Do I want that? If I want it, then it's mine.
The children with autism I have had the privilege of learning with also do not like waiting. ( Who does? ) They need their schedule filled with as little "waiting" time as possible. There is always something to fill in between tasks that are enjoyable for them. But if there is too much time for any one given thing....besides maybe TV.....they get bored and frustrated wondering when they can get on with their day. The day should also be made of relatively short tasks divided up by sensory breaks. We can relate! Don't our days go by faster at work when we are busy? Most individuals prefer that to a day where there wasn't much to do and the day slowly dragged on.
Last Example:
If a child with autism is used to his afternoon routine, and is given too much unstructured time, he may get impatient and want to get the day over with and go home already. This may happen "just-because" the child wants to go home to watch Sesame Street rather than be at school also, you might not know for sure, but the point is it happens. He/she decides they want to go home. But, the child knows they have a certain routine to go through to before going home. They start to tantrum to get to the next task.
This is where schedule, routine, visual aids, and possibly timers are crucial. It also takes a very calm and firm individual to carry out the tasks at hand.
No matter how fast you were to get through the end of the day tasks, the child still cannot go home. If he is upset now, he will continue to be upset the rest of the afternoon up until the bus comes to take him home. The only thing accomplished by rushing through the tasks is to reinforce the idea that if I whine or tantrum I make people scurry around to give me whatever I want.
Filling a child's day with "jobs" or expectations actually results in less behaviors from being bored and trying to manipulate.
Sometimes you cannot help when a routine is interrupted....there are plenty of unpredictable things that happen in life. So, we should be even more vigilant in keeping a routine to keep them as calm and comfortable as possible so they can better handle the changes. Whether it's a swing around the bathroom, or singing a favorite song as we walk down the hallway or just remembering to follow the patter of "snack, bathroom, bus".......it will make ALL the difference in the success of the child.
Sunday, December 9, 2012
Heartache at the Christmas Train
We wanted to surprise Tristen this year and take him to the holiday train that passes through our town once a year. Those of you reading this who don't have autistic kids might wonder how standing out in the snow waiting for a train to come and stop so a band can sing Christmas songs while Santa wanders throughout the crowd would be exciting to a boy turning 15 in three months. Those of you who do have a kid on the spectrum, are probably wondering how we managed to keep from ever taking him until now.
Well the stars aligned and we were able to take him tonight. He was excited beyond belief. Not only to be that close to a train, see the cars, the passengers....... and hearing the whistle blow would have been enough. But it was a CHRISTMAS train, with SANTA and lights and music that he LIKED. He was dancing in the snow in the middle of the crowd.... to the slight embarrassment of his brother, mind you, but we were all equally happy to see him so happy. As the band played on, he started to notice the packed ice under his feet....it was our first real snow-fall of the season and Tristen gets mesmerized by it. He was scuffing his feet ever so gently to even out the packed snow and I noticed a piece fly up just the height of a little boy, maybe two or three years old, who was watching him. The mother noticed this piece of snow just as I did and gave an angry disgusted glare. I quickly explained to Tristen to look at the people around him because he was getting snow in the little boy's face. He immediately jumped and stopped and said, "I'm sorry!" He tried to step toward the family and tell them he was sorry, he didn't mean to, but the mother scooped her children up and turned her back to us in one swift motion. Josh and I moved Tristen in between us.....his eyes started to well up.
"I feel bad, Mom."
"I know you do sweetie. I know it was an accident. We are not mad at you. Just look around you next time, ok? "
"I never kick snow again."
"I know. It's ok"
It broke my heart. He couldn't even apologize. Granted, it would be hard to tell, out in the middle of a snowy evening in a crowd of people that this kid had special needs. Even if I had an autism pass-out card to give her....it wouldn't have mattered because she obviously did not want an explanation. Despite the fact this person was out to celebrate Christmas with her children, she obviously did not know the meaning behind the holiday.
It makes me so sad to think that this is the world I brought my children into. We are too busy and wrapped up in our own lives to even give a 3 second "it's ok" ....even if you don't really mean it. Why are people so uncaring and unkind? It's CHRISTMAS for heaven's sake!
I want to protect him from this world. I want to keep him close at all times. But I know I can't if I want him to learn and grow. And it breaks my heart to think of people treating him that way. I know this experience could have been worse. The stranger could have yelled at him. There could have been a big scene. It makes me afraid for him everyday when I see the absence of humanity in our world.
I have a bit of hope when I go to work each day. I pray the 4th and 5th graders who are so awesome to the special kids at their school grow up and in adulthood remember that feeling of kindness and charity, so that their generation of special needs kids will have the chance to enjoy life and public events without the fear of being ridiculed and misunderstood. That is my Christmas wish.
Well the stars aligned and we were able to take him tonight. He was excited beyond belief. Not only to be that close to a train, see the cars, the passengers....... and hearing the whistle blow would have been enough. But it was a CHRISTMAS train, with SANTA and lights and music that he LIKED. He was dancing in the snow in the middle of the crowd.... to the slight embarrassment of his brother, mind you, but we were all equally happy to see him so happy. As the band played on, he started to notice the packed ice under his feet....it was our first real snow-fall of the season and Tristen gets mesmerized by it. He was scuffing his feet ever so gently to even out the packed snow and I noticed a piece fly up just the height of a little boy, maybe two or three years old, who was watching him. The mother noticed this piece of snow just as I did and gave an angry disgusted glare. I quickly explained to Tristen to look at the people around him because he was getting snow in the little boy's face. He immediately jumped and stopped and said, "I'm sorry!" He tried to step toward the family and tell them he was sorry, he didn't mean to, but the mother scooped her children up and turned her back to us in one swift motion. Josh and I moved Tristen in between us.....his eyes started to well up.
"I feel bad, Mom."
"I know you do sweetie. I know it was an accident. We are not mad at you. Just look around you next time, ok? "
"I never kick snow again."
"I know. It's ok"
It broke my heart. He couldn't even apologize. Granted, it would be hard to tell, out in the middle of a snowy evening in a crowd of people that this kid had special needs. Even if I had an autism pass-out card to give her....it wouldn't have mattered because she obviously did not want an explanation. Despite the fact this person was out to celebrate Christmas with her children, she obviously did not know the meaning behind the holiday.
It makes me so sad to think that this is the world I brought my children into. We are too busy and wrapped up in our own lives to even give a 3 second "it's ok" ....even if you don't really mean it. Why are people so uncaring and unkind? It's CHRISTMAS for heaven's sake!
I want to protect him from this world. I want to keep him close at all times. But I know I can't if I want him to learn and grow. And it breaks my heart to think of people treating him that way. I know this experience could have been worse. The stranger could have yelled at him. There could have been a big scene. It makes me afraid for him everyday when I see the absence of humanity in our world.
I have a bit of hope when I go to work each day. I pray the 4th and 5th graders who are so awesome to the special kids at their school grow up and in adulthood remember that feeling of kindness and charity, so that their generation of special needs kids will have the chance to enjoy life and public events without the fear of being ridiculed and misunderstood. That is my Christmas wish.
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