About Me

A couple of years ago, I found my autistic child locked in a small cold cement cell at his school. The cell had no windows, no furniture, and was slate gray with low lighting. The cell was also sound proofed so parents and teachers outside wouldn’t hear him crying. I am writing this blog as a campaign to change the way these children are perceived and treated in our society.

Friday, October 29, 2010

The Cause of Autism

The reason I am discussing this is to give something for parents with a new born to think about.  For parents who have a child who has already been diagnosed with autism, please don’t perceive this as encouragement in any way to try some of the dangerous cures that are floating out there on the Internet.
There is much disagreement on the subject of the cause for autism, so I will try to clear away some of the smoke.
There has been some evidence that autism is a genetic disease.  They asked me many questions about this when they first diagnosed my son, eventually checking that he had a family background of autism, even though NO ONE IN MY NOR MY HUSBANDS FAMILY EVER HAD AUTISM.  They did so, because I mentioned that my father was unusually intelligent.  He not only has a medical degree, but he also has a masters in aeronautical engineering.  I find this funny, as if my father has autism, then I want it too.  Neither my father, nor anyone else in our family has had any kind of debilitating sensory issues like my son.  My father does not have trouble with communicating, speech, or languages, but has, in fact, studied sixteen languages.  But the professionals, for their epidemiology studies, check off that my son had a history of autism in his family?  Why did they do this?  I don’t know, other than it is true that people often find the answer that they are looking for, and the current assumption in the medical community is that autism is a genetic disease, so that is what they look to prove.
Because so many have concluded that autism has a genetic component, I will acquiesce on this point … although I firmly believe that there has to be a very strong environmental trigger.  If my father was autistic, like they marked down, and I am also genetically predisposed, why didn’t either of us panic in the classroom when we were five years old?  Why didn’t we get up and start dancing around and completely ignore the teacher?  If there is a genetic trait that made my son more susceptible, it was a trait that never manifested in any of his other family members.  So the question remains, what was the trigger?
Additionally, they have shown a significant rise in the cases of autism in the main population of some of the developed countries, Unites States of America included.  There are many of these studies, easily found in a web search, all with slightly different numbers.  Over forty years ago, 1 child in 10,000 was diagnosed with autism.  Now, 1 child in 150 (some papers show 1 in 100, the numbers vary by study).  Whatever the paper you look at, the number of cases is on the rise.  One crazy explanation that they have for this is that the professionals are better at diagnosing these children now.  I know everyone likes to pat themselves on the back, but I have never heard a more silly explanation, as many who have an autistic child will tell you.  When I was younger, there was a special needs program at our school, but none of those children’s symptoms followed the pattern o f my son’s.  My son cannot understand what you mean when you give him a simple direction, but then he will memorize all of the planets in our solar system, as well as their atmosphere and the weather patterns on each planet.  I would have been blown away if one of the special needs children that I knew when I was my sons age was able to do that.  Furthermore, the number of overall children entering the special needs program is mushrooming and the school systems are having a very difficult time handling all of the autistic children that are being enrolled.  If it was simply better diagnosis on the part of the professional community, then there would not be an overall increase in the number of children with special needs.  Essentially, my son never would have been able to attend a “regular” classroom like I did, so he would have been diagnosed with something, so there should not be an overall rise.  Finally, if you have cases where there are identical twins and one has autism and one does not, there has to be an environmental trigger.
The main point that I am trying to show is:  There may be a genetic predisposition for autism, but there is also an environmental trigger, and this trigger is increasing over the past couple decades in our modern industrialized nations.
Now, what is the environmental trigger?  Unfortunately, they don’t know.  There has been speculation that it is vaccines.  This makes sense to me as my son received twice as many vaccines by the age of two as I did.  Many do not believe it is vaccinations because the epidemiology studies that were done suggested that there was no link between thimerosal and autism.  Other studies show that there is no link between the Measles Mumps and Rubella shots and autism.  My suspicion is that it is not one vaccine in particular, but rather an overloading of the immune system that causes autism.  Perhaps that is the reason that they are not able to link it to one particular vaccine.  Additionally, some in the medical community are starting to regard autism as an immunological disorder, putting the vaccines back on top as a list of suspected triggers.  I would be interested to see an epidemiology study that shows the frequency of autism in children who receive all of these shots by the age of two versus children who receive the shots over a longer period of time.  There is a higher amount of children who are afflicted by autism in the Northern part of the United States than in the South, a possible explanation for this is that the culprit could be the combination of vaccines and another illness at the same time.  In essence, an overload of the immune system is caused not by the vaccines alone, but by the other illnesses that the child comes into contact with.  If most children acquire autism by the age of two years old, why not give them the MMR shot at the age of three?  When one considers how just a few decades ago there were studies that showed that smoking cigarettes was good for you, it is reasonable to question the assertion that the epidemiology study proves that autism is not triggered by having too many vaccines and that overload the young child’s immune system could be the cause.
So, in summation:  The evidence suggests that there is no link between autism and high number of vaccines received by the age of two, but it is not conclusive.  Therefore, it would be advisable to 1) Try to have your child immunized during the summertime when their immune system will not be fighting off as many other infections.  2) Under advice of doctor, ask about postponing some of the immunizations.  Simply see if it is possible to have that shot at age of three rather than back to back with the booster that they just gave your child.  I would not recommend forgoing the vaccines all together, as this would be exposing your child to other very real illnesses.
Are there other possible triggers besides vaccines?  Yes, of course.  I would be suspicious of anything that has surfaced in industrialized societies in the past two decades.  As crazy as it sounds, if I could go back in time, I would keep my son away from cell phones, microwaves, and food warmed in plastic containers until he reached the age of three and was out of the danger zone for developing autism.  And, until they find conclusively what in our environment triggers autism, I would recommend that anyone with a baby does the same thing.

Thursday, October 28, 2010

Seven Ways to Help Your Autistic Child to be More Comfortable at School

1)      Ensure that you have given the teacher a complete change of clothing for your child.  Many autistic children have sensory issues and would have a hard time coping if something spills on them and they are unable to change.
2)      See if you can find some foods that have long shelf lives, and keep them as a back-up lunch.  My son does not like school lunches and has panicked before when I forgot his lunch in the morning (I know, bad Mommy award).  He likes trail mix and juice boxes, both of which stay good for a few months.  So, now I have a back up “lunch” in his back pack, just in case I forget his lunch, or he doesn’t like what is in it.
3)      Make a list of things that upset your child and send them into the school.  Although special needs teachers have extra training, they may not have had special training for autistic children.  Or, there may be a teacher’s assistant or a bus monitor that has received no special training with autistic children and doesn’t understand your child’s needs.  It is always better to have a list that mentions things like, my child will become upset if you touch their stuff without asking, so the adults are aware of your child’s needs.
4)      Make a list of all of the things that your child loves and give it to the teacher.  Include all the little things, like bouncing a ball against the wall.  The school will have you fill out many, many forms and more than one of these forms will ask for this information.  You will be better off having a list that you can reference on your computer at home as this list can grow and develop over time.
5)      Have the teachers send a list home of all of the “rules” of the school.  These rules should include things like:
a.       Don’t chew gum in school.
b.      No cell phones.
c.       No hand held computer games.
d.   No special blankets or stuffed animals.
e.   The child should not try to leave the room without having an adult go with them.
f.   The child should not stand up without raising their hand.       
       These rules are important to know so that you don’t send your child into a situation where you have told them “don’t lose this!” and then they have a teacher’s assistant try to take it away.  You would be amazed at the number of rules these school’s have – and your child will probably have a hard time communicating with them to explain their point of view.  Then they may become intimidated and cry.  Put in writing a letter to the school explaining to them an autistic child’s difficulty with communicating and the need for you to have all of their rules in writing.  Also, request that the rules that impact your child are not changed without first discussing the changes with you.  Review all the rules with your child at home.
6)      Understand the power of the IEP.  If your child does not have an IEP, request one.  If you feel that your child has a need that is not being meet, request an extra IEP meeting.  If the meeting doesn’t go the way you would like, search the Internet for special needs parents support groups in your area.  There are many non-profit groups set up to help the parents navigate the special needs system … you want to find one and work with someone at this charitable organization that also has a special needs child of their own.  Think of them as a mentor, as a guide to finding out what programs are available for your child.
7)      Try to bring cookies or pastries to meetings that you have with the teachers.  If they do something nice, be certain to send a thank you note.  Although you may need to push the school to make proper accommodations for your child, you want to stay on a really positive ground with the people that deal directly with your child.  Since your child may have a hard time communicating with them, you want to make certain that you communicate really well with them.
      The factor that will have the greatest influence on your child's comfort will be your ability to communicate with the teachers at the school.  It is really good for you to be on the same page with them, even from before the time you enroll your child in the school program.  Please look at my post Sensory Deprivation for some important questions to ask before you choose a school for your child.

Wednesday, October 27, 2010

10 Ways to Help your Autistic Child Ride the Bus

1)      Try to follow the same pattern every day. If you normally get on the bus and escort your child to his seat, continue to do that. If you normally stand and wave good bye, continue to do that. Any changes that you need to make, let the child know ahead of time. “I will no longer be able to get on the bus with you, so today you will have to carry your backpack to your seat.”
2)      Many autistic children are sensitive to noises in their environment.   One of the best, albeit expensive, purchases that I made for my son was a noise reduction headphone.  One of the nice ones, one that cover the ears.
3)      Ensure that your child has a seat to themselves.  If the bus drives says that they don’t have it available, then request an IEP meeting and have it included as part of their plan.
4)      Purchase a hand held computer game, or a hand held DVD player, or find several books from the library that they really like so that they have entertainment on the bus ride.
5)      Transitions can be difficult for an autistic child.  To help them cope with this, play to their strength by getting them focused on something that they enjoy, like a movie or a show.  For a few days in a row, my son was having a particularly hard time getting onto the bus, so I started a show that he liked on a hand held DVD player five minutes before the bus arrived.  With the show going and his headphones on, he marched right onto the bus, completely focused on the hand held device.  Please make certain that the show is short enough so that it will end before the bus ride is over, otherwise they will have a hard time getting off of the bus.
6)      Ensure that they are not doing anything before the bus is coming that they will have to stop.  Do not have them watching a program on the TV (that they cannot bring with them on the bus) or have them playing with a toy, or a pet that they will have to leave behind.
7)      Be certain that they have plenty of time to board the bus when it comes.  As I said before, transitions can be difficult for an autistic child, so you want to ensure that you do not do anything to elevate them right before the bus arrives.  I have a few memories of trying to rush my son to be ready for the bus, only to have him freeze up.  Try to include enough time in your mornings so that rushing him is not necessary.
8)      Have the cell phone number of the school bus handy in case the bus is running late and your child is starting to become distracted, you can call to find out how much longer they will be.  This is also good if for some reason your child becomes upset right before the bus arrives.  This will give you a chance to explain to them that you need a few minutes for your child to calm down.  Although the bus drivers have a schedule to keep, sometimes they can pick up another child first and come back to get yours.  They may not be able to do this all the time, but if you have a few minutes for your child to calm down before you try to transition them, it will make for a much better day. 
9)      Have a discussion with the bus driver and the assistant about your child's needs.  If your child doesn’t like having his backpack touched by anyone, mention that to them so that they don’t try to grab it.  Make certain that they have your cell phone number.
10)   If the child is having a hard time and your schedule permits, drive him or her to school.

For other tips on dealing with autistic children, visit 101 Ways a Teacher Could Help a Child with Autism

Monday, October 25, 2010

Communicating with an Autistic Child

My child is now twelve years old, and it seems amazing that when we had him tested at four and half years old, only 10% of the words he spoke were audible.  He has such a large vocabulary now that it seems strange that he was struggling so much back then. 
However, an important thing that I have to remind myself is that, even though he has a large vocabulary, his view of the world is so different, that he still has a hard time understanding what it is that you are trying to tell him.  Recently, I twisted my ankle and I was unable to walk without crutches for eight weeks.  During this time, I relied on my son to participate in the household work much more than he was ever asked to previously.  Although he was valiant in his efforts, it was a frustrating time for both of us because he simply didn’t understand what I was saying half of the time. 
One specific episode comes to mind as I was trying to explain to him how to do laundry for the first time.  Because I was unable to go up and down the stairs, I had to stand at the top of the stairs and call down to him while he was in the basement near the washer and dryer.  I recall standing at the top of the stairs yelling, down to him “turn the setting to more dry!” 
His response was“it doesn’t say more dry!” 
“Well, what does it say?” I yelled back.
“It say less dry and very dry!”
“Then turn it to very dry!” I replied. 
Now, it seems to me, that many people would deduce what I meant when I said more dry, but he did not.  Often, when he has not done something before, he finds other people's explanation of how to do it lacking.  He is simply lost by the way others explain things to him.
Just this past week at school, he was having a panic attack about writing a personal narrative.  The teacher told him that he had to be very specific and detailed in his writing, and he was unable to remember the story exactly.  Now, of course, when a teacher tells you that you have to be detailed in your writing, you would understand that they mean that the story is more interesting and colorful if you write, not about the man that you met, but about the unshaven man, who was wearing a green baseball cap on backwards. 
Unfortunately, my son panicked at the request for details as he did not remember what everyone was wearing in his story, and so he felt that to embellish would be lying.  After he heard the stories that the other children wrote, he calmed down and wrote his story with ease.  The message about writing a detailed story that the teacher was trying to convey was never received by my son … he simply does not interpret people’s expressions the way that you would expect him to.
The difficulties underlying communicating with an autistic child go far deeper than teaching the child an adequate vocabulary.  The child may be oblivious to many of the non-verbal cues that you take for granted.  They may completely misunderstand your analogy, or they may take your hyperbole seriously.
There have been many times where my son’s view point of the world has delighted me.  I have found that living with someone with a unique viewpoint is a real blessing … patience and understanding is necessary until true communication occurs, and when that happens, his wonderful way of looking at things always makes me smile J

Friday, October 22, 2010

Another day for an Autistic Child's Parent

Previously, in my post Autism and Punishment, I reflected on how I believe some of these special needs programs may be too hard on the autistic child.
Last night, my son was up and crying about a school assignment that he said he would be in trouble if he didn’t finish.  Essentially, my son is very focused on what he is interested in and it is very hard for him to change his focus to what you want him to be interested in.  The teachers have found how much he can do when they are learning about a topic that he enjoys … and they seem to believe that he should be capable of operating at this level all of the time.  
I believe all of us have experienced a time where we would much rather be thinking about something other than the school assignment that was handed to us.  Yet, direction by the teacher to focus on it, or the hopes of a good grade, is enough for us to redirect our thoughts away from that beach we would like to be lying on.  For my son, it is not so easy … and this concept seems to be hard for the teachers to understand.  They keep going back to the fact that he is capable of doing the work, capable of learning, seemingly to forget that he has trouble directing his thoughts.
It seems as if the whole set up of the school is contrary to how he learns.  The school system itself is like a massive organism trying to control every moment of my sons learning experience, rather than simply trying to enhance his own natural curiosity.  In other words, if he successfully writes about topics that interest him, why on earth don’t they simply ask him to write about topics that interest him?
I find it so hard to be a working single mom, when the more I look at everything that has happened with my boy, I feel that I should have home schooled him.  How about you, are you happy with school that you are sending your child to?  If you had to change one thing that they do, what would that be?  Please leave a comment.

Thursday, October 21, 2010

Finding the Right Educational Path for an Autistic Child

As I mentioned before, I really appreciate the effort and concern the teachers from the school that my son is going to currently, but I still find that we are coming from different philosophies. 
In order to better explain my view, let me tell you about a TV special that I saw a long time ago about a young man with severe learning disabilities.  In the show, it showed the primary care give (I don’t remeber if it was his mother, maybe his aunt or grandmother) pushing the child to graduate from high school.  The show was all about what an amazing job she did getting this child to graduate when all of the experts said that she couldn’t … sounds great, right?  But then it shows her getting him ready in the morning, and as he is trying to button his shirt, she is slapping his hands away and buttoning it for him.  And every other screen that it shows the two of them together, it shows her pushing him and leaning on him, either in a psychological fashion or actually physically handling him.  The young man, now around nineteen, so obviously tries to do anything to please her, but it was also obvious that what she was pushing him to do was extremely difficult for him.  So he graduates from high school, but at what cost?  And to what benefit?  Will it really help him that much in his life?  Is an employer really that much more likely to hire someone with obvious mental limitations simply because they have a high school diploma?
 We have all seen the stereotype of the aggressive father who pushes his son to play football.  The child is trying his absolute hardest, but nothing is good enough for the father short of his son becoming the next super sports star.  This steretype of this father is used as a warning to parents not to be to hard on their children ... yet it seems that no one has a problem with pushing children with limited mental abilities, pushing them to the point of them crying every day.
So, as I watch these requirements being placed on my son, sometimes I have to wonder, are the schools systems simply expecting WAY TOO MUCH from my child?  Especially, I feel this way as he is constantly reading educational books and going on line to research topics with any spare time he has.  I have no doubt that the child loves to learn, he is just interested in what he is interested in.  He is not good a jumping through the school’s hoops.  He is not good at taking their standardized tests, he hates them.  He would rather be spending his time studying new subjects then to have them test him on math questions that nobody ever showed him how to do.  It makes no sense to him to be tested on material that he has not learned … In other words, he is perfectly able to learn, he is just not good at following the exact path that the school wants him to.
Right now, my son is having a hard time writing a personal narrative.  Fortunately, I worked out a system with the school that if he is having difficulty with an assignment, they send it home to me and I will work on it with him in a more comfortable environment.  This seems to work pretty well, so I am hoping for some success … but I still wonder why it is soooooo important that this particular assingment is done.
What do you think?  Do you have an autistic child that you feel is being pushed too hard to conform?  Please comment and let me know your thoughts!   

Tuesday, October 19, 2010

Ways the School Could Help Meet Your Autistic Child’s Basic Needs

In my last post, I mentioned the need for a paradigm shift in the way that these children are viewed and handled.  Essentially, this is what I feel the problem is: the schools push them too hard to be something that they are not.  In my initial post I listed recommendations on how to ensure that your child will not be subjected to inappropriate punishments.   When I discussed the second school, I mentioned the strong need for parental involvement in the school that you choose to send your child too (i.e., do they have a parents teacher organization that will help you meet other parents).  I really like the very understanding teachers and staff at the current school my son attend, and I like how they listen when I have suggestions on how to help him.  My current concern is with some of the goals that the school sets for my child … I don’t think that I am on board.
I remember a few years ago when my aunt gave me some advice after my son was first born:  “When my children are misbehaving and acting up, if they are tired, cold, or hungry, I feed them and put them to bed.”  Essentially, she meant that you have to meet the needs first, don’t worry about punishing them when they are miserable, meet their needs.  With autistic children, it seems that the schools don’t follow this simple rule.
Time and again, I read stories on line about how some autistic child reacts physically, but if you read further you will find that the whole incident could have been avoided if they had simply meet the needs of the child.
Imagine that you are in a strange foreign land where you don’t know anyone.  You don’t speak the language and don’t understand what everyone is saying to each other.  Some of the people here are over twice your size.  You do your best to try to stay out of people’s way, but cannot really figure out what is going on.  One of the very large people comes up to you, and you don’t understand what they are saying.  You think they said backpack, and they reach for your backpack and try to take it out of your hands.  Your backpack has your only food in it and your favorite toy and they are trying to take it.  You scream!  They keep trying to take it, and as you try to fight back, the take you and pin you to the ground.
Continually, again and again, I find myself disappointed by the times that an “incident” is recorded because my son responds physically …. But when I start to ask what happened, I find that it is another case of the teacher or the teacher’s aide trying to push him.  They push these children in different ways.  Push them to look into their eyes.  Push them to respond to their questions.  Push them to work on the assignments that they want rather than what the child is really interested in.  Push them to sit still.  Push them to speak differently, to use inflection in their voice.  Push them to raise their hands before they go to the bathroom.  Yesterday, they pushed him to stop burping in class.  As my son is older now, and also is away from the school that placed him in seclusion and made him worse, incidents of him reacting physically are very rare ... but although the current environment helps him to not react physically, he is still becoming frustrated and crying almost everyday. 
He told me last night, through tearful eyes, that he became upset and ripped up his daily sheet and pushed over a chair.  They took away a point from him for burping three times in class, and those points would have earned him a pizza on Friday.  He was really upset, as he was having a lot of gas, and was trying to be quiet about the burps but couldn’t help it.  The teacher sends me a note saying that he was burping and laughing and wouldn’t stop, and that he reacted physically when they took the point.  Now, if you are a child, who has gas, and you can’t stop, and you are sitting with several of your friends, what is a boy to do?  I would say, laugh and pretend it is a joke to hide your embarrassment.  As a parent, I really don’t care at this point if he follows all of the social niceties of polite society … I am MUCH MORE CONCERNED WITH HIM BEING IN A COMFORTABLE ENVIRONMENT WHERE HE CAN LEARN.
But these schools are not really designed for autistic children, not a single one of the special needs schools that I have taken him to have been.  Oh, yes, they have smaller class rooms.  They have occupational therapist and sociologist … but the basic design is still for “normal” children.
 Here is a list of ways that these schools could really help these children become comfortable.  Ways to help meet their basic needs, before they started to expect anything from them.
1)      Their own cubicles!!  That is right, adults have them in offices, and autistic children need them.  The cubicle wall could be about four feet high (short enough for the teacher to see over, but high enough so the child would not see over it while sitting in there).  This eliminates the need to start to work on things that the child might not be ready to work on, like placing a special needs teacher in the untenable position of trying to stop a young autistic child from burping. 
2)      If the child has a special blanket at home that he likes, for goodness sakes, let him bring it into the school.  For that matter, let him decorate his cubby hole the same way adults would decorate the cubicle that they work in.  If the child wants a bean bag chair, give him a bean bag chair.
3)      If the child starts to have success with a certain teacher, he stays with her or him.  The idea of moving up with a class of students does not work well for autistic children.  They tend to bond more closely with adults, not their fellow students.  The child should only stay in the class IF the teacher connects with him or her.  I cannot say enough how well my son does with certain people, and how poorly with others.  Of all the care givers or babysitters I have had for him over the years, he NEVER acted up with three of them that understood and connected with him, while he would give a hard time to the others.  So, if the child isn’t connecting with a teacher, switch him to a different teacher.  If the child makes a connection with a teacher, keep him with that teacher from year to year.
4)      Don’t test the child on any subject matter or in any fashion at all until it is determined that he or she is mature enough to be able to handle it.  If testing the child does start and it is upsetting to them, stop testing them.  Continually testing a special needs child is cruel.
5)      Have some type of way to help the child block out sounds from outside his cubby hole.  I bought my son an expensive set of comfortable noise reduction headphones, and they work brilliantly!
I know for a fact, that if my son, when he was younger, would have been able to go to school and go to a cubby hole that had his favorite blanket, and then and he could sit on a bean bag chair and read books he liked, he NEVER would have reached the frustration, anger, and anxiety levels that the schools cause him.  I also know that he would have been able to learn so much more in an environment were he was not always anxious and afraid. 

Monday, October 18, 2010

Autism and Punishment

There is one aspect of having a child who views and reacts to the world so differently that is very hard to deal with:   Although I propose that an autistic child is not at fault for his temper, I find that many people are simply not sympathetic to someone who behaves “differently.”
When dealing with my son, I have found it very helpful to have a conceptual framework or theory on why he is behaving the way he is.  There have been studies that show autistic children have a lower amount of the long-range inter-connectivity in their neural networks.  I propose that the lack of these long range connectors results in many of the behaviors that he displays.
One behavior that “gets him in trouble” is how it appears as if he is not listening to the adult who is trying to give him directions.  But, if he has impaired long range connectors, what else would you expect him to do?  The eighth nerve in the ear may be sending the message to the brain, but that doesn’t mean the message is being processed.  One of my personal frustrations with him was how he would not listen when there was danger.  For example, we could be outside and he would see something interesting, he may run towards it without any sense of the dangers in the world around him.   He could dart out in front of a car to get to the cute dog he sees across the street, and completely ignore my screams for him to stop!  But when we tested him for hearing, his hearing is fine.  So, that must mean that he is ignoring the adult?  … well, no, not if he is focusing on something else.  His ear may be working, but the message is simply not being received nor processed by him.  His entire world is the cute dog that he wants to get to. 
Another way in which this lack of long range neural connectors could affect a child would be in how they display their emotions.  If the area of the brain that deals with emotions is somewhat isolated, they could be feeling a lot of things that is never being communicated to the frontal lobes for processing and planning, nor communicated to the speech center.  Finally, when it is too much for the emotional center (because the child has been suffering for a while now), you have an eruption of emotion as that message is finally received and the child reacts.  What is the child upset about?  The response might be something simple, like they are really thirsty and need something to drink.  So you get them water, but they remain upset and crying.  You have placed the water in front of them, but once again, the message that the water is now there has not made it back to the emotional part of the brain.  That part of the brain is still suffering from the fact that it was upset about being ignored.  And, to the best of its knowledge, it is still being ignored because the visual cortex cannot communicate with it to let it know that a glass of water is sitting within hands reach.  Imagine that you are young and not able to reach the cupboard to get a glass, and every time you wanted or needed a glass of water, you were completely ignored until you started to scream and cry.  You are continually in a state of pain and discomfort, and when you have had enough and try to fight for the water, you are punished by people three times your size.  What a scary world.  This is the world that the autistic child lives in, one in which their needs are ignored until they throw an absolute fit … any wonder that they lose their tempers?  And then we, the adults, punish them.
In my two earlier posts I spoke of two schools that I sent my son to.  One school would lock him in a closet when he would become upset, and the other school would physically restrain him and take away everything that he looked forward to that day.  The school he is in now has wonderful teachers and they are very supportive, but I still feel that a paradigm shift in how we view these children needs to happen.  There are so many times, so many things that happen where his needs are not met until he throws a fit, and then they react.  There seems to be a constant push by society (or the school in this case) for my child to conform.  He is the one with the problem, and he needs to change.
The reason that I find this so frustrating is that if my child was born with no legs, I have a hard time imagining someone pushing the child to walk, to drag himself along the ground.  But I constantly see him being pushed to do things that he is not currently capable of doing …
What has helped me tremendously with my son, is to shift the focus away from what my son cannot do, and onto what he can.  I set him up to succeed in every way that I can.  There are several things that I now do that help tremendously:
1)      Allow him enough time to transition from one activity to another.  As a single working parent I am always in a rush, I have to switch into a slower gear when dealing with him as when I try to rush him he becomes overwhelmed.
2)      I let him know ahead of time what is going to happen and what I expect of him.  Before we go over to his friend’s house, I let him know that we are going to leave at a particular time.  Before his friend comes over to play, I let him know that he needs to pick out some toys that he doesn’t mind the other child playing with.  Having the expectations set ahead of time makes all the difference.
3)      No matter how crazy it sounds to me, I take care of all of his sensory issues.  If we need to try on 10 pairs of sneakers to find a pair that he will wear, then I will do it.  When he focuses on something that bothers him, he cannot stop thinking about it, so comfortable clothes are very important for him to have a good, productive day.
4)      When he becomes upset, I wait until he is calm before I try to give him direction … even when we are out in the community and people stare at me while he is behaving inappropriately.  They can stare all they want, if I try to communicate with him when he is in that state, it only serves to keep him agitated longer.
And the final and main thing that I do is I accept and love him for being the way he is. 

Friday, October 15, 2010

Importance of Parent Involvement at the Special Needs School

Another important question to ask the special needs school that you are considering enrolling your child at is: Does this school have a Parents Teachers Organization? If not, are you opposed to starting one?
There are several reasons that parent involvement is very important. The first of which is, you want to know other parents at your child’s school so that you can arrange play dates with your child. A second, very important reason, is that you want contact with other parents if your child starts having problems at the school. For an autistic child, some very minor things may become very difficult for the child. Even though your child is in a special needs program, you may find that neither the teachers nor the school administrators are willing to accommodate your child in a fashion that you believe is best for your child. Because of Health Insurance Portability and Accountability Act (HIPAA) and other confidentiality laws, the schools will not give you any information on any other students at your child’s special needs school. You want to make contact with other parents at the school BEFORE your child starts to have problems.
As an example of what type of frustrating experience you may have working with the school, please read the following personal narrative that I wrote after a particularly exasperating meeting. The end result was I had to take Patrick (not his real name, some of this is very personal and I didn’t want to do that to him) out of the school I described. He is currently in a much more cooperative school system where they do listen to my input. One main difference between the school I describe in the narrative and the school he is at now, is that the current one has a strong PTO group. The administrators at the other special needs school flat out refused to alter my son’s programs in the most simple ways. In the story I wrote, I was simply trying to either get an answer key for the homework they sent home, or for them to limit the homework assignments to math, spelling or sentences where there would be a clear answer. This was necessary because if they asked homework questions that had more than one possible answer, Patrick would become highly agitated if he didn’t know for certain that the answer he wrote was correct. His panic was caused by the fact that the school would take away his free period at the end of the day if he didn’t do the entire homework assignment properly. I thought this type of punishment to be draconian, but they maintained that “it was not a punishment.” Hmmm. Interesting that the behavior therapist there thought that if she called it “not a punishment” that it wasn’t … even though she would take away something from him that he dearly wanted.
So please read the following as an example of a reason for a strong PTO group. I have found that at schools that have the increased participation from the parents, you find administrators and teachers more willing to consider what the parents have to say. In the following true story (true to the best of my recollection, but the names have been changed to protect the guilty :o) the teachers and the behavior therapist did not consider input from the parents to have any value at all. They had their system and they would not make even small changes or concessions for the needs of your child.

Personal Narrative:
My short finger nails were making a racket against the steering wheel, all the frustration and angst manifesting itself in the tips of my fingers as they tapped out a marching tune. I looked up at the building and wondered what barb or insult was waiting for me inside the depressing brick building … clickity click click, click click …. School buildings in general might not be known for their architecturally pleasing qualities, but I swear this building had an additionally depressing aspect about it … click click …. As I looked at it, I could almost see on aura around it, a haze of grayness, blackness …. clickity click …
I glanced over at the time and let out a long sigh … time to go in. I rung the buzzer at the front door and the cheery receptionist opened the door and smiled. She seemed so upbeat, so out of place. As I sat in the waiting area, I wondered why the grayness of the place did not seem to affect her. Even though current school administrator Mr. Knight had been working here for a few months, he had not yet exercised all of the demons that lurked in the shadows, and I wondered why those demons tolerated her positive attitude …
“Ms Kelly?”
I looked up to the smile on the face of Ms. Buttermint and then flicked my eyes to look into her cold, unsmiling eyes.  “Yes?” I replied.
“We are ready for you.”
I followed her up the stairs and into my son’s class room. Waiting there were Patrick’s two teachers Ms. Jolie and Mrs. Vanderhoff. His speech therapist, his gym teacher, and Ms. Buttermint also joined the meeting. One by one they went around the room talking about what a great job they did to Patrick during the semester, the wonderful way in which they handled him. Although the difficult previous director was no longer physically here, the results of his hiring and training these people was apparent.
After they were finished singing their praises, they asked me if I had any questions … it seemed a formality, a question left over from a horrible day in which the parents were supposed to have some input or say in their child’s care. I believe that they hoped that I wouldn’t respond.
“Sometimes I have trouble with Patrick’s homework assignments.” I confessed, “I never have a problem with the math homework, you don’t have to worry about that, or when you send home the sentences or spelling … but, there are some grammar questions that I may not know the answer to, like the problem you sent home about the simple subject and the complete subject, I had no problem with the simple subject, but I couldn’t remember if “a” or “the” would be included with the complete subject. Not knowing the answer makes homework very, very stressful for Patrick, for when I can’t answer his questions.”
A supercilious smile spread across Ms. Jolie’s face. “Well … the complete subject would include the ‘a’ or ‘the’ while the simple subject is only the”... and then I think she gave me an example of a simple subject, I am not certain because I stopped listening and tried to formulate a response to steer the conversation back to my request and away from her attempt to belittle me.
I replied, “I understand, as I said, I have no problem with the math or spelling, and usually I know the grammar, but sometimes I may not know for certain and he becomes very upset because he knows that he will lose free period if he doesn’t complete his homework. Is there any way not to give him homework like that?”
The other teacher, Ms. Vanderhoff responded “We send homework home that we have gone over that day, he should already know how to do it as I explained it to him. He shouldn’t have any questions.”
“And we have to send homework on the lesson that we did that day,” piped in Ms. Jolie.
“Ummmm,” I stammered as my mind was reeling wondering why on earth that they would make an issue of such a small request, “ummm, perhaps you could photo copy the answer key … ?”
“No, no we can’t do that.” Ms. Vanderhoff sniffed, as if I had asked for secret government documents, “besides, we need to know if Patrick needs help with his homework, we need to know what he has problems with.”
“But, I could let you know that … I am not going to just give him the answers, I just want to be able to answer questions he has … I am only asking a small thing …“ my voice trailed off, my mind still amazed by why these people would choose to be so difficult.
“I think it is good for Patrick to have some hurtles, and to realize that his mother doesn’t always have the answer.” Ms. Buttermint stated.
She was claiming that it is good for the child to have some difficulties to overcome? That was her position? With all of the adversity that this child has faced, all of his daily struggles, was she really recommending that we purposely make the learning experience more difficult for my autistic child?
I breathed deeply, and tried again “At home, there are many times I have to prompt Patrick to do his homework; it is something that I have to push him to do. To push him and then to not be able to answer his questions puts me in a difficult position, and it is very upsetting to him. He was crying for over an hour about the complete subject question.” I then turned to Ms. Jolie, “You know how Patrick is, how would you handle Patrick if you tried to teach him something but then when he had a question, you said you couldn’t answer it? You tried to have him do an assignment, but when he asked you something, you had to tell him you didn’t know? Wouldn’t that be difficult?”
Ms. Jolie looked down at her hands, she knew I was right.
“But I already explained it to him, he shouldn’t have any questions,” interrupted Ms. Vanderhoff. “I don’t understand why he would need to ask you.”
Incredulous, I looked at her and tried to think of examples, “perhaps the homework is worded in a slightly different way, or he is now home and he can’t quite remember what you said …” was I really trying to explain to a special needs teacher why a child with learning disabilities might need something explained to him more than once?
“As I said, I think some struggles are good for Patrick, can’t you possibly see our point of view?” Ms. Buttermint interjected.
“ …. But it is such a small thing …” I pleaded.
As I was starting to drown in their half truths and screwy logic … memories of Patrick at home rocking back and forth crying saying he was going to lose his free period and repeating “I’m stupid” over and over and over brought all of my frustration’s to the surface.
“No, I can’t see you point of view because you are not trying to see mine,” I snapped.
“We are not trying to make things difficult for you with the home work, so don’t blame us for this.” responded Ms. Vanderhoff.
“I didn’t blame you before I explained to you what was going on, but now that you know and you choose not to do anything I do blame you.” I stood up and added (as calmly as I could) “thank you for the good job that Patrick has done this semester,” and left.  Or I said something like that; I can’t really remember my exact words as I was so upset.

The narrative goes on from there, describing other difficulties I had with the school and why I had to transfer my son out. It is a hard decision to switch an autistic child to a new school as even small changes may overwhelm them. That is why I recommend asking many, many questions before you enroll your child in an out of district special needs school … and I will say again what I said in my last post, don’t let an administrator in the special needs department convince you that you have to pick from one of two schools. If the schools that they show you are inadequate, do research on line to find other options!!

Thursday, October 14, 2010

Sensory Deprivation

When my child was six years old, the public school teachers said that they could not deal with him as he was too disruptive.  He would not get off the bus in the morning.  He would not come back in from recess with the other children.  He always wanted to sit away from the other students off by himself.  So, they pushed for me to send him to a school out of district … and forever to my shame, I listened.
Unbeknownst to me, the special school they sent him to locked him in a closet.  They would sometimes do this all day, for several days a week.
They didn’t call it a closet, they called it the “crisis room;” a place for him to go when he was upset.  It was a gray, cement room, about the size of a small closet, sound proofed, with no windows, and no furniture nor blankets.  They would lock the door so he couldn’t get out.  There was a small slit window very high on the door, but he was not nearly tall enough to see out … and the person “watching” him on the other side wouldn’t be able to see if him if he sat on the floor … and since he would be left in there all day, he would normally sit on the floor.
They left a six year old child in a cold, gray cement room for hours at a time, for all day.  And he would cry and whimper on the other side of the door.
After he started going to this school, he would flip out when I would try to put him on the bus in the morning.  Scream.  Cry. Kick.
I started thinking that his symptoms of autism were worse then I originally thought, maybe the teachers were right … so I caved when they recommended restraining him on the bus.  Looking back, I know that any child would scream, cry, and fight if they were going to be locked in a small cell all day.  But at the time, I had no idea, so I helped pin him down to put the restraints on him … my goodness, remembering this is making me cry.  How will he ever forgive me?  How can I forgive myself for not knowing?  Please, if you read this, let other parents or people with autistic children know, they have to be careful.
He was at that school for four years before I saw the cell they were putting him in.  Four years of him becoming more depressed, his symptoms continually getting worse.  He never went back to that school after I the day I first saw the crisis room.  That was three years ago … but I still have problems with the school he is in now. 
I am not advocating spending more money on these children, but I am advocating changing the way we treat them.  We need a shift in the way we view these children and the way that we try to educate them.  My son still has problems in school, and for a child who LOVES to learn, this is wrong.  He will pick up a book about astronomy and learn the planets.  Pick up a book about chemistry and memorize the periodic table.  Why is a child like this terrified to go to school?  Why is a child like this constantly afraid of looking stupid?  Why is a child who loves to learn always testing so poorly?
The answer is my son, and probably many other children with autism, do not fit the patterns of “regular” or “normal” children.  Their needs are different.  They learn differently.   Unfortunately, it does not matter how much money you spend on a program to educate them (the school that locked him in the closet was VERY expensive), what matters is a program that is designed to bring out their best qualities.  To be fair, many of these specialized programs have spent an incredible amount of effort catering to the child’s needs … but they do this from a negative approach.  They focus on the negative aspects of the child’s persona.  For example, if a child screams when people are too close to him, then they set the child further apart from other children.  Or if the child cannot follow a large group and will start acting up, then they will put them in a smaller group of children.  But these programs are all reactionary.  They react to the child’s negative behavior … I have yet to see or hear of one that focuses on bringing out and catering to these children’s strengths.
I am sorry if this article sounds overly critical of our public school systems … there are many teachers, as well as those in the health industry that are very compassionate and really care about these children.  But we have a LONG way to go.  What happened to my son should never have happened.  When I first saw the tiny cell they were putting my child in, I thought of the One Who Flew Over the Cuckoo’s Nest.  I was completely shocked that things like this still happen in our society!
So my recommendation to parents of autistic children is to start to ask the hard questions of the school before you enroll your child in the program:
How will my child be handled when he is unable to comply with your direction?
What if he becomes unregulated and starts to become physical?  (You can qualify this statement by saying that he/ she is normally not physical)
Do you ever attempt to lower the sensory input of a child who is escalated?  If so, what is the maximum amount of time a child would stay in the lowered sensory environment?  (So you know, if you search the web, you will find that there have been studies that have shown that lowered sensory input will help calm an autistic child.  These studies mention about 20 to 30 minutes.  There is currently NO EVIDENCE that show leaving a child in a sensory deprived environment for hours has any therapeutic effect whatsoever.  Have the school put in writing that the child will not be subjected to this type of restraint for more than 30 minutes)
If the child responds negatively to the lowered sensory input, what other methods will be used to handle the child until he/ she has calmed down?
Are there any other methods used to handle children when they are escalated that we have not discussed?
Are any of the methods that we discussed controversial?
My child is really good at ________.  What do you do that encourages and brings out his strengths?  (Example: memorization, interested in dinosaurs)
What methods do you use to find out the child strengths?  The child likes?  How do you then incorporate these into their programs?
If it was determined that my child benefited and remained calm with lots of exercise, is your program flexible enough to then provide him with some type of enjoyable exercise every day?
My child has a hard time with ______.  Are there aspects of your program that will expose this weakness?  (Example:  my son hates being tested on information he was never taught, but there are state wide tests that they keep giving to him.  I want to know what the school is going to do to make this time easier for him.  Are they going to let me know before they start testing him?  Are they going to give him special treats?)

Finally, don’t ever let the school system or teacher’s bully you into accepting a program that you don’t feel will fit.  As a single working parent, I needed to send my son somewhere, and I let the bureaucrats convince me that my son was problematic and that there were only a couple of places that could possibly take him.  One or the other, I had to choose.  I later looked on line to find THIRTY-FIVE school systems within a 15 mile radius that would take children with autism at his grade level.  So if they try to pressure you, go on line and do your own research to find what is out there.