In the past almost three months since my last post, alot has happened. I guess the most significant item is the fact that my son's center, Step by Step Academy will be closing. This is very disheartening. Logan was doing SO well there. One more year, and he could be put into a mainstream school and interact with other children his age that were normal, and he could have some sense of normalcy, as much as he could. However, Gov. Strickland and his appointed staff of yes men (and women) saw differently. Strickland didn't like the fact that the school was succeeding at it's job, which is trying to recover autistic children and turn them into future taxpayers, (which we all know that's what they view children as), as well as doctors, news anchors, scientists and other professions. Never mind that. It's all about the here and now. He wants that money for one of his hair-brained "education" schemes.
Now, we have no idea what we are going to do to get Logan the therapy he needs. ODJFS and OMRDD were supposed to get things lined up for us if/when Step by Step was closed or reduced. We had a care coordination meeting with ODJFS as well as the Autism Society of Ohio's Vice President Charlie Flowers come to our house. We were told that we were to basically do what ODJFS was supposed to do. Nothing like losing a month of time to find funding and places to take Logan due to a lobbyists idiocy.
Melissa has been working her tail off trying to get services for Logan. She's working the phones to try and get him respite services, maybe another ABA therapy service, anything that will help us help him achieve the goal of getting him into a mainstream school.
Logan has also been receiving in-home as well. It works very well and I'm proud of all of his progress. The BT's that come here are awesome, and work very well with him. They always remark how well he does, and how much they love working with him. I guess we did something right in raising him.
I'm very proud of him, and I'll always be there to help him, as well as all my daughters, in dealing with his autism in a positive way. It's tough at times, but I know in my heart that we will make it through this tough time. This is a very stressful time for Melissa and I. The not knowing what will happen is very scary, but I'm confident that we'll make it through.
Thursday, February 28, 2008
Tuesday, December 11, 2007
Alot of goings on
What we have been going through over the past month or so. Where to begin.
ODJFS has been trying to shut down Step by Step. They have been attempting this for the past year or so. They are using the fact that they will be out of compliance if they don't change certain ways that the services are paid for. They claim that the Federal Gov't will fine the state. What is interesting is that the Federal Gov't has stated that the states shouldn't do anything until they come up with mandates regarding Autism treatment. Apparently someone at ODJFS (Ohio Department of Jobs and Family Services) thinks they know exactly what the Federal Gov't is going to do, and assumes that we will be out of compliance. WRONG!!!!!
If the Federal Gov't says wait..you wait. Don't make assumptions. I have not heard of any other centers being threatened by this move. However, I don't think that ODJFS is going to stop at Step by Step. They will try to save the state some money on the backs of the children that need the help the most. It seems like Gov. Strickland cares about the kids, but just won't give them the money they need to help themselves. ODJFS is a red tape machine. They have attempted to trip up parents of children who are attending Step by Step by trying to get us to say certain things. Why do they INSIST on trying to hurt our children by taking away the services they need to help themselves. One of the commissioners of ODJFS even suggested that we insitutionalize our children. If this is a supposed caring organization, that wouldn't even be considered by them. They want to sweep the problem under the rug and let our sons and daughters not make anything of themselves.
I'm asking anyone who reads this to contact their state and federal senators and representatives to help stop this rule change from taking effect. ODJFS and Gov. Strickland have said they are trying to find alternatives, but those alternatives won't help them, or we won't be able to access them either due to the waiting list, or the cost of the service being prohibitive.
ODJFS has been trying to shut down Step by Step. They have been attempting this for the past year or so. They are using the fact that they will be out of compliance if they don't change certain ways that the services are paid for. They claim that the Federal Gov't will fine the state. What is interesting is that the Federal Gov't has stated that the states shouldn't do anything until they come up with mandates regarding Autism treatment. Apparently someone at ODJFS (Ohio Department of Jobs and Family Services) thinks they know exactly what the Federal Gov't is going to do, and assumes that we will be out of compliance. WRONG!!!!!
If the Federal Gov't says wait..you wait. Don't make assumptions. I have not heard of any other centers being threatened by this move. However, I don't think that ODJFS is going to stop at Step by Step. They will try to save the state some money on the backs of the children that need the help the most. It seems like Gov. Strickland cares about the kids, but just won't give them the money they need to help themselves. ODJFS is a red tape machine. They have attempted to trip up parents of children who are attending Step by Step by trying to get us to say certain things. Why do they INSIST on trying to hurt our children by taking away the services they need to help themselves. One of the commissioners of ODJFS even suggested that we insitutionalize our children. If this is a supposed caring organization, that wouldn't even be considered by them. They want to sweep the problem under the rug and let our sons and daughters not make anything of themselves.
I'm asking anyone who reads this to contact their state and federal senators and representatives to help stop this rule change from taking effect. ODJFS and Gov. Strickland have said they are trying to find alternatives, but those alternatives won't help them, or we won't be able to access them either due to the waiting list, or the cost of the service being prohibitive.
Tuesday, October 9, 2007
Autism Walk and other things.
One thing that seems to bring people together are the walks for Autism. Cleveland, Ohio just had a walk two weekends ago, and it was expected to draw 4,000 walkers to Jacobs Field. The actual attendance was 6500. The anticipated goal for money to be raised was $250,000. They raised (as of the e-mail I received shortly after) over $537,000, with money still coming in. That is a great thing to hear.
As far as Logan's progress, he isn't doing all that bad. He's been moved to what they call the Garden Patch, which is a group setting with other children. He seems happy with it. He seems to be progressing well on the social aspects of everything.
However, as I believe I've expressed before, I'm concerned about his repetitive motions. They are starting to become more frequent. We've spoken to the school, and they are watching it to see what it is, be it a imitation of what he sees, or something else that may need some extra attention.
I do want to turn some attention to the recent Supreme Court case of the New York schools v Tom F. It seems that the New York City schools want to curtail a parents ability to change IEP's (Individualized Education Plan), stating that the parent needs to "try out" what the school recommends before they can change or take them out to put them in a specialized school for Autism. This reeks of politics, in my opinion. First, the schools get funding based on enrollment. Secondly, (and this again is my opinion), they would use what triumphs they made with any special needs children to obtain that funding as well. They (and I'm referring to most public school systems in metropolitan areas) don't really have the resources and staff to properly educate each individual child. And when it comes to children with autism, it gets even more dicey. IEP's for children with autism need to be tailored to each individual child, hence the word INDIVIDUAL in the name. They need one on one with a trained therapist to help them with life skills. Most school systems are stretched thin for their regular student bodies. How can they say they should have the first right to tell parents what is best for their child with autism? The parent should have the final say, in my opinion. No bureaucrat should be anywhere near that decision.
I'd like to hear other's opinions on this matter. Feel free to contact me at gambit624@gmail.com
As far as Logan's progress, he isn't doing all that bad. He's been moved to what they call the Garden Patch, which is a group setting with other children. He seems happy with it. He seems to be progressing well on the social aspects of everything.
However, as I believe I've expressed before, I'm concerned about his repetitive motions. They are starting to become more frequent. We've spoken to the school, and they are watching it to see what it is, be it a imitation of what he sees, or something else that may need some extra attention.
I do want to turn some attention to the recent Supreme Court case of the New York schools v Tom F. It seems that the New York City schools want to curtail a parents ability to change IEP's (Individualized Education Plan), stating that the parent needs to "try out" what the school recommends before they can change or take them out to put them in a specialized school for Autism. This reeks of politics, in my opinion. First, the schools get funding based on enrollment. Secondly, (and this again is my opinion), they would use what triumphs they made with any special needs children to obtain that funding as well. They (and I'm referring to most public school systems in metropolitan areas) don't really have the resources and staff to properly educate each individual child. And when it comes to children with autism, it gets even more dicey. IEP's for children with autism need to be tailored to each individual child, hence the word INDIVIDUAL in the name. They need one on one with a trained therapist to help them with life skills. Most school systems are stretched thin for their regular student bodies. How can they say they should have the first right to tell parents what is best for their child with autism? The parent should have the final say, in my opinion. No bureaucrat should be anywhere near that decision.
I'd like to hear other's opinions on this matter. Feel free to contact me at gambit624@gmail.com
Wednesday, September 19, 2007
Oprah's Autism Show
I would be the last person to ever sit down and watch an episode of Oprah. While I do commend her for her success (which she does deserve), I'm not a fan. However, yesterday, she did a show on Autism. But not a normal show about children with Autism. She had two guests on her show to discuss Autism. The main guest was Jenny McCarthy. The blond model and actress. The girl who is in love with Jim Carrey. She wrote a book about her son Evan's autism and how she has helped him deal with it, and make great strides forward. Also, Holly Robinson Pete, who was an actress on 21 Jump Street (for those younger than 25, Google it), and married to college and pro football athlete Rodney Peete. She has a 10 year old son who has Autism. She recently "came out" about her son's autism. Her son was diagnosed in 1999. It's sad that she had to "come out", but unfortunately, it's a reflection on our society's view at the time on this affliction.
Jenny McCarthy seems to very knowledgeable about autism. She did what most parent do to initially learn about this affliction. She went to the internet. Evan was diagnosed when he was 3 years old. He is 5 now.She used many resources at her disposal to learn about it. She took the view that his diet was holding him back from being the Evan she knew he could be. She put him on a Gluten-free diet. She said within 2 weeks, she noticed a big difference in him. He was using sentences. Currently, from what Ms. McCarthy stated, he is doing well.
During the show, she did talk about her book. She mentioned her reaction to the diagnosis, how she dealt with it, and the things she tried. She also talks about the breakdown of the marriage, which seemed to be caused by her son's autism. I'm not blaming the autism in any way, shape or form. Having a child with autism does strain a marriage, if only one person shoulders the load. Both partners have to be strong, if anything for the child's sake.
One thing that stuck with me about this show was that both Ms. McCarthy and Mrs. Peete said that there isn't one magic "cure-all" bullet that will help every child with Autism. What worked for Evan, may not work for your child, if they are affected. To me, that was a great thing to say. Each child with autism has to be approached differently. However, to add to what they say, the only consistent all children with Autism need, is love and support. but that should be a given.
One other item that they mentioned on the show was what to say. If you noticed, I have been saying a child with Autism, or children with Autism. No matter what, it should be the child first, autism second. It's a small thing to ask, but, to me and many other parents, the child should ALWAYS be first.
I just want to thank Oprah for letting Ms. McCarthy and Mrs. Peete share their stories. She treated them with dignity, and didn't try to, as I call it, glamorize autism.
If you want more information on Jenny's book entitled "Louder Than Words: A Mother's Journey in Healing Autism", please click on this link to Amazon.coms listing of her book. While I may or may not purchase it, it's good to see a perspective on Autism, and also shows that it can affect anyone in any socialecomonic status.
Jenny McCarthy seems to very knowledgeable about autism. She did what most parent do to initially learn about this affliction. She went to the internet. Evan was diagnosed when he was 3 years old. He is 5 now.She used many resources at her disposal to learn about it. She took the view that his diet was holding him back from being the Evan she knew he could be. She put him on a Gluten-free diet. She said within 2 weeks, she noticed a big difference in him. He was using sentences. Currently, from what Ms. McCarthy stated, he is doing well.
During the show, she did talk about her book. She mentioned her reaction to the diagnosis, how she dealt with it, and the things she tried. She also talks about the breakdown of the marriage, which seemed to be caused by her son's autism. I'm not blaming the autism in any way, shape or form. Having a child with autism does strain a marriage, if only one person shoulders the load. Both partners have to be strong, if anything for the child's sake.
One thing that stuck with me about this show was that both Ms. McCarthy and Mrs. Peete said that there isn't one magic "cure-all" bullet that will help every child with Autism. What worked for Evan, may not work for your child, if they are affected. To me, that was a great thing to say. Each child with autism has to be approached differently. However, to add to what they say, the only consistent all children with Autism need, is love and support. but that should be a given.
One other item that they mentioned on the show was what to say. If you noticed, I have been saying a child with Autism, or children with Autism. No matter what, it should be the child first, autism second. It's a small thing to ask, but, to me and many other parents, the child should ALWAYS be first.
I just want to thank Oprah for letting Ms. McCarthy and Mrs. Peete share their stories. She treated them with dignity, and didn't try to, as I call it, glamorize autism.
If you want more information on Jenny's book entitled "Louder Than Words: A Mother's Journey in Healing Autism", please click on this link to Amazon.coms listing of her book. While I may or may not purchase it, it's good to see a perspective on Autism, and also shows that it can affect anyone in any socialecomonic status.
Tuesday, September 11, 2007
Update
What amazes me the most about Logan is his carefree attitude. I envy that. I wish I could see the world like he does at time. Obviously for one reason to understand how he sees the world and therefore understand him. But more importantly, just to be carefree. Not worry about bills or how he's progressing in school or when his next breakdown is going to occur. That is one of the blessings of having Logan is, is that he teaches me that it does help to be care free. Enjoy life.
He's progressing well in school. All of the behavioral techs love him. Obviously there are some items he needs to get better at. He has a tendency to repeatedly shake his hands, which I am concerned about. Also, he's not eating his lunch at school for some reason. This has become more and more common as of late. We don't really have a reason as to why. But he seems to be doing well in some of the more academic items he's working on. I'm just glad that's the easy part.
I got posed an interesting question last week. Someone asked me how I felt about Autism being represented by the puzzle. Up until that point, I never even gave it a second thought. There are some that feel the puzzle piece is insulting. From what I was told, (and this was from a co-worker who worked on a project at his school), they felt that the puzzle represented something that would never be completed.
Honestly, autism may never be truly cured, as we see it. It's such a wide ranging affliction that we may never truly cure it, but be better able to teach those affected with autism (no matter the severity)the skills needed to succeed in life. I feel that the puzzle piece is a good way to bring attention to Autism. The trick is, helping people understand that when they have a breakdown in a mall or some other public place. That, to me, is more important than how it is represented.
10tv never posted the video online (as of last week, when I stopped looking). I DVR'd it, and copied it to a DVD. Of course, when I re-watched it, I noticed they did a close up of his feet when he was doing a puzzle, and of course there were dirty. Ahhh... I guess fame comes with a price.
He's progressing well in school. All of the behavioral techs love him. Obviously there are some items he needs to get better at. He has a tendency to repeatedly shake his hands, which I am concerned about. Also, he's not eating his lunch at school for some reason. This has become more and more common as of late. We don't really have a reason as to why. But he seems to be doing well in some of the more academic items he's working on. I'm just glad that's the easy part.
I got posed an interesting question last week. Someone asked me how I felt about Autism being represented by the puzzle. Up until that point, I never even gave it a second thought. There are some that feel the puzzle piece is insulting. From what I was told, (and this was from a co-worker who worked on a project at his school), they felt that the puzzle represented something that would never be completed.
Honestly, autism may never be truly cured, as we see it. It's such a wide ranging affliction that we may never truly cure it, but be better able to teach those affected with autism (no matter the severity)the skills needed to succeed in life. I feel that the puzzle piece is a good way to bring attention to Autism. The trick is, helping people understand that when they have a breakdown in a mall or some other public place. That, to me, is more important than how it is represented.
10tv never posted the video online (as of last week, when I stopped looking). I DVR'd it, and copied it to a DVD. Of course, when I re-watched it, I noticed they did a close up of his feet when he was doing a puzzle, and of course there were dirty. Ahhh... I guess fame comes with a price.
Tuesday, August 21, 2007
Logan on TV
Logan was on TV today. Channel 10 WBNS did a story on Step by Step Academy, as well as a family with an autistic child. When they showed some of the things they do at the school, Logan was one of the students they showed on TV. From what we've been told, he was really good for the taping, and behaved himself. I watched the story at work with a couple of people, and I was proud. I'm very proud of him and the progress he has made.
If I can get the link to a video of it on the WBNS TV's website, I'll post it here.
If I can get the link to a video of it on the WBNS TV's website, I'll post it here.
An Autism List
One of my friends who lives in Mass sent me this. I think this is so true, and people need to stop and think about this before they criticize the parents or assume the child is undisiplined.
Thanks to my friend Nikki for sending this:
Here are 10 things every child with autism wishes you knew.
1. I am a child with autism. I am not "autistic." My autism is one aspect
of my total character. It does not define me as a person. Are you a person
with thoughts, feelings and many talents, or are you just fat (overweight),
myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?
2. My sensory perceptions are disordered. This means the ordinary sights,
sounds, smells, tastes and touches of everyday life that you may not even
notice can be downright painful for me. The very environment in which I
have to live often seems hostile. I may appear withdrawn or belligerent to
you, but I am really just trying to defend myself. A "simple" trip to the
grocery store may be hell for me. My hearing may be hyperacute. Dozens of
people are talking at once. The loudspeaker booms today's special. Muzak
whines from the sound system. Cash registers beep and cough. A coffee
grinder is chugging. The meat cutter screeches, babies wail, carts creak,
the fluorescent lighting hums. My brain can't filter all the input, and I'm
in overload! My sense of smell may be highly sensitive. The fish at the
meat counter isn't quite fresh, the guy standing next to us hasn't showered
today, the deli is handing out sausage samples, the baby in line ahead of
us has a poopy diaper, they're mopping up pickles on Aisle 3 with ammonia.
... I can't sort it all out, I'm too nauseous.
Because I am visually oriented, this may be my first sense to become
overstimulated. The fluorescent light is too bright. It makes the room
pulsate and hurts my eyes. Sometimes the pulsating light bounces off
everything and distorts what I am seeing. The space seems to be constantly
changing. There's glare from windows, moving fans on the ceiling, so many
bodies in constant motion, too many items for me to be able to focus - and
I may compensate with tunnel vision. All this affects my vestibular sense,
and now I can't even tell where my body is in space. I may stumble, bump
into things, or simply lay down to try and regroup.
3. Please remember to distinguish between won't (I choose not to) and can't
(I'm not able to). Receptive and expressive language are both difficult for
me. It isn't that I don't listen to instructions. It's that I can't
understand you. When you call to me from across the room, this is what I
hear: "*&^@, Billy. ..$&^amp;*" Instead, come speak directly to me in
plain words: "Please put your book in your desk, Billy. It's time to go to
lunch." This tells me what you want me to do and what is going to happen
next. Now it's much easier for me to comply.
4. I am a concrete thinker. I interpret language literally. It's very
confusing for me when you say, "Hold your horses, cowboy!" when what you
really mean is "Please stop running." Don't tell me something is a "piece
of cake" when there is no dessert in sight and what you really mean is,
"This will be easy for you to do." When you say, "It's pouring cats and
dogs, " I see pets coming out of a pitcher. Please just tell me, "It's
raining very hard." Idioms, puns, nuances, double entendres and sarcasm are
lost on me.
5. Be patient with my limited vocabulary. It's hard for me to tell you what
I need when I don't know the words to describe my feelings. I may be
hungry, frustrated, frightened or confused, but right now those words are
beyond my ability to express. Be alert for body language, withdrawal,
agitation, or other signs that something is wrong.
There's a flip side to this: I may sound like a little professor or a movie
star, rattling off words or whole scripts well beyond my developmental age.
These are messages I have memorized from the world around me to compensate
for my language deficits, because I know I am expected to respond when
spoken to. They may come from books, television or the speech of other
people. It's called echolalia. I don't necessarily understand the context
or the terminology I'm using, I just know it gets me off the hook for
coming up with a reply.
6. Because language is so difficult for me, I am very visually oriented.
Show me how to do something rather than just telling me. And please be
prepared to show me many times. Lots of patient repetition helps me learn.
A visual schedule is extremely helpful as I move through my day. Like your
day planner, it relieves me of the stress of having to remember what comes
next, makes for smooth transitions between activities, and helps me manage
my time and meet your expectations. Here's a great web site for learning
more about visual schedules
http://www.cesa7.k12.wi.us/newweb/content/rsn/autism.asp
7. Focus and build on what I can do rather than what I can't do. Like any
other human, I can't learn in an environment where I'm constantly made to
feel that I'm not good enough or that I need fixing. Trying anything new
when I am almost sure to be met with criticism, however constructive,
becomes something to be avoided. Look for my strengths and you'll find
them. There's more than one right way to do most things.
8. Help me with social interactions. It may look like I don't want to play
with the other kids on the playground, but sometimes it's just that I
simply don't know how to start a conversation or enter a play situation. If
you can encourage other children to invite me to join them at kickball or
shooting baskets, I may be delighted to be included.
9. Try to identify what triggers my meltdowns. This is termed "the
antecedent." Meltdowns, blowups, tantrums or whatever you want to call them
are even more horrid for me than they are for you. They occur because one
or more of my senses has gone into overload. If you can figure out why my
meltdowns occur, they can be prevented.
10. If you are a family member, please love me unconditionally. Banish
thoughts such as, "If he would just ..." and "Why can't she ... ?" You
didn't fulfill every last expectation your parents had for you, and you
wouldn't like being constantly reminded of it. I didn't choose to have
autism. Remember that it's happening to me, not you. Without your support,
my chances of successful, self-reliant adulthood are slim. With your
support and guidance, the possibilities are broader than you might think. I
promise you I'm worth it.
It all comes down to three words: Patience. Patience. Patience.
Work to view my autism as a different ability rather than a disability.
Look past what you may see as limitations and see the gifts autism has
given me. I may not be good at eye contact or conversation, but have you
noticed I don't lie, cheat at games, tattle on my classmates, or pass
judgment on other people?
You are my foundation. Think through some of those societal rules, and if
they don't make sense for me, let them go. Be my advocate, be my friend,
and we'll see just how far I can go.
I probably won't be the next Michael Jordan, but with my attention to fine
detail and capacity for extraordinary focus, I might be the next Einstein.
Or Mozart. Or Van Gogh.
They had autism too
Thanks to my friend Nikki for sending this:
Here are 10 things every child with autism wishes you knew.
1. I am a child with autism. I am not "autistic." My autism is one aspect
of my total character. It does not define me as a person. Are you a person
with thoughts, feelings and many talents, or are you just fat (overweight),
myopic (wear glasses) or klutzy (uncoordinated, not good at sports)?
2. My sensory perceptions are disordered. This means the ordinary sights,
sounds, smells, tastes and touches of everyday life that you may not even
notice can be downright painful for me. The very environment in which I
have to live often seems hostile. I may appear withdrawn or belligerent to
you, but I am really just trying to defend myself. A "simple" trip to the
grocery store may be hell for me. My hearing may be hyperacute. Dozens of
people are talking at once. The loudspeaker booms today's special. Muzak
whines from the sound system. Cash registers beep and cough. A coffee
grinder is chugging. The meat cutter screeches, babies wail, carts creak,
the fluorescent lighting hums. My brain can't filter all the input, and I'm
in overload! My sense of smell may be highly sensitive. The fish at the
meat counter isn't quite fresh, the guy standing next to us hasn't showered
today, the deli is handing out sausage samples, the baby in line ahead of
us has a poopy diaper, they're mopping up pickles on Aisle 3 with ammonia.
... I can't sort it all out, I'm too nauseous.
Because I am visually oriented, this may be my first sense to become
overstimulated. The fluorescent light is too bright. It makes the room
pulsate and hurts my eyes. Sometimes the pulsating light bounces off
everything and distorts what I am seeing. The space seems to be constantly
changing. There's glare from windows, moving fans on the ceiling, so many
bodies in constant motion, too many items for me to be able to focus - and
I may compensate with tunnel vision. All this affects my vestibular sense,
and now I can't even tell where my body is in space. I may stumble, bump
into things, or simply lay down to try and regroup.
3. Please remember to distinguish between won't (I choose not to) and can't
(I'm not able to). Receptive and expressive language are both difficult for
me. It isn't that I don't listen to instructions. It's that I can't
understand you. When you call to me from across the room, this is what I
hear: "*&^@, Billy. ..$&^amp;*" Instead, come speak directly to me in
plain words: "Please put your book in your desk, Billy. It's time to go to
lunch." This tells me what you want me to do and what is going to happen
next. Now it's much easier for me to comply.
4. I am a concrete thinker. I interpret language literally. It's very
confusing for me when you say, "Hold your horses, cowboy!" when what you
really mean is "Please stop running." Don't tell me something is a "piece
of cake" when there is no dessert in sight and what you really mean is,
"This will be easy for you to do." When you say, "It's pouring cats and
dogs, " I see pets coming out of a pitcher. Please just tell me, "It's
raining very hard." Idioms, puns, nuances, double entendres and sarcasm are
lost on me.
5. Be patient with my limited vocabulary. It's hard for me to tell you what
I need when I don't know the words to describe my feelings. I may be
hungry, frustrated, frightened or confused, but right now those words are
beyond my ability to express. Be alert for body language, withdrawal,
agitation, or other signs that something is wrong.
There's a flip side to this: I may sound like a little professor or a movie
star, rattling off words or whole scripts well beyond my developmental age.
These are messages I have memorized from the world around me to compensate
for my language deficits, because I know I am expected to respond when
spoken to. They may come from books, television or the speech of other
people. It's called echolalia. I don't necessarily understand the context
or the terminology I'm using, I just know it gets me off the hook for
coming up with a reply.
6. Because language is so difficult for me, I am very visually oriented.
Show me how to do something rather than just telling me. And please be
prepared to show me many times. Lots of patient repetition helps me learn.
A visual schedule is extremely helpful as I move through my day. Like your
day planner, it relieves me of the stress of having to remember what comes
next, makes for smooth transitions between activities, and helps me manage
my time and meet your expectations. Here's a great web site for learning
more about visual schedules
http://www.cesa7.k12.wi.us/newweb/content/rsn/autism.asp
7. Focus and build on what I can do rather than what I can't do. Like any
other human, I can't learn in an environment where I'm constantly made to
feel that I'm not good enough or that I need fixing. Trying anything new
when I am almost sure to be met with criticism, however constructive,
becomes something to be avoided. Look for my strengths and you'll find
them. There's more than one right way to do most things.
8. Help me with social interactions. It may look like I don't want to play
with the other kids on the playground, but sometimes it's just that I
simply don't know how to start a conversation or enter a play situation. If
you can encourage other children to invite me to join them at kickball or
shooting baskets, I may be delighted to be included.
9. Try to identify what triggers my meltdowns. This is termed "the
antecedent." Meltdowns, blowups, tantrums or whatever you want to call them
are even more horrid for me than they are for you. They occur because one
or more of my senses has gone into overload. If you can figure out why my
meltdowns occur, they can be prevented.
10. If you are a family member, please love me unconditionally. Banish
thoughts such as, "If he would just ..." and "Why can't she ... ?" You
didn't fulfill every last expectation your parents had for you, and you
wouldn't like being constantly reminded of it. I didn't choose to have
autism. Remember that it's happening to me, not you. Without your support,
my chances of successful, self-reliant adulthood are slim. With your
support and guidance, the possibilities are broader than you might think. I
promise you I'm worth it.
It all comes down to three words: Patience. Patience. Patience.
Work to view my autism as a different ability rather than a disability.
Look past what you may see as limitations and see the gifts autism has
given me. I may not be good at eye contact or conversation, but have you
noticed I don't lie, cheat at games, tattle on my classmates, or pass
judgment on other people?
You are my foundation. Think through some of those societal rules, and if
they don't make sense for me, let them go. Be my advocate, be my friend,
and we'll see just how far I can go.
I probably won't be the next Michael Jordan, but with my attention to fine
detail and capacity for extraordinary focus, I might be the next Einstein.
Or Mozart. Or Van Gogh.
They had autism too
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