When you get the diagnosis of Autism in your family, it is a lot like when you get a new car. You know what I am talking about. You do all this research on your new purchase. You want an automobile that meets your needs, has your favorite color, all of your required, unique specs! Then the car comes home, and you notice there are other people driving a car like yours.
It is like that with Autism. Before, when I heard the word, I didn't know a lot about it, but I did know that I prayed I would never have a child with Autism ( I really did), and that it seemed like a death sentence to those who had it. Then Autism enters our life...and every time you hear or see the word Autism, whether it be in print, news, or in passing, you are drawn to it.
The weekend after Brent and I received the educational diagnosis, we went straight to Barnes and Noble and bought every book we could on Autism and read them. We stormed the internet, we couldn't get enough information.
A glimpse of the future...while doing all of this, the real lingering pang was that I didn't even care about the here and now with Sam, I wanted to know his future. All parents hope, dream and wonder what the future holds for their child. If they will marry, if they will be grandparents, if their child will be happy. Now, our focus changed......would he be able to live on his own if he wants to as an adult, will he have meaningful relationships with people in his life that he can share love and laughter with besides family, will he have a job/career that is fulfilling and makes him feel needed? We just want to know what his life will look like.
A glimpse of the future...we see it occasionally. We see children older than him at therapy each week, who look like they are functioning, learning, etc... I am so intrigued when I meet another family with Autism in their life, to see what their child looks like, and how does Sam compare.
A glimpse of the future...we find it occasionally. I constantly read blogs at autistics.org to understand the way they think. It is inspiring, interesting, and hopeful to understand Sam more and what he might be like.
A glimpse of the future...we can watch it occasionally. Sometime this year, the movie "Snow Cake" starring Sigourney Weaver will be released. It is about a mother who is Autistic. A chance to see a portrayal of an adult with Autism in the movies other than Rainman.
A glimpse of the future...we can witness it occasionally. Like yesterday, which is what inspired me to write today.
http://kare11.com/news/news_article.aspx?storyid=119488
Yesterday, when 17 year old, Jason McElwain, scored 20 points in the last 4 minutes of a high school basketball game. With 18 of those points coming from 3 point shots, and the other one had his foot on the line. He got his chance to shine, and he too has Autism. While I know nothing about his individual journey with Autism, I know everything about how that mom must feel!
A glimpse of the future...we can never take in too much of the word Autism. We can never see too much of it, like when you notice that new car of yours being driven by others too. Sam is our own unique 2002 model loaded with extras. His Autism is not the enemy in our home, it is our friend. It is our son. It is our hope, that he gets every opportunity to be who he wants to be in the future, and not what we want him to be!
Friday, February 24, 2006
Sunday, February 19, 2006
Writer's Block (Journal #12)
Wow! I am surprised if anyone checks back on this site. I haven't been inspired to write (while I am always, still inspired by Sam) in awhile. Everytime I start something, I am distracted, or just don't feel like putting it to words. Lazy, hmmmmm. Truly, I write just to get it out anyway, so maybe the fact that I haven't written for awhile means I am coping. Ya right :)
Actually, I have been busy figuring things out. Taking Sam to therapy for speech and OT two entire afternoons a week starts to wear on you. Okay, how does that relate to my topic sentence. Well.........I am trying to figure things out as I am overwhelmed by the parent autism connections I have. While Brent and I have great support through agencies like Minnesota Autism Society and the Osseo School District, it is at North Memorial Hospital's Rehabilitation waiting/observation room that I find support that can overwhelm me at times. I spend two days a week freaked out and trying to figure things out.
First of all, the staff at North are awesome to say the least. They love and work so well with Sam. What happens is, that you wait with the same group of parents every week all afternoon. Many are there for various reasons, but at the time we go, the majority are also parents of autistic children.
I am trying to figure things out, because sometimes I feel like I am not doing enough for Sam, but yet in my heart I feel we are. There are parents there I have grown very close to, but differ so much in views with Autism. There are those on the whole "mercury" rampage. Those who only do biomed. Those who swear by hours of ABA therapy (one of the most proven successful therapies for autism), and those who have successfully done the gluten/casing free diets (of which we saw NO change in Sam when we did), and last but not least is "doping" (my term, it's Olympic time you know) their children with every vitamin therapy there is, close to chelation as well.
I really don't believe it was the immunizations for Sam. I knew something was well different with him well before the first MMR immunization. Sometimes I still even blame myself, wondering how much tuna I ate, what I exposed him to in utero. I don't know. I will never know what caused his autism, but I do know I am making peace with the fact that he has it. It doesn't mean everything is "peachy keen", but it means we accept it, and Brent and I say okay, let's go forward, not backward.
Okay, so I could go into how it seems the Autism community is becoming divided on the biomed/accept not cure Autism debate. We, however are blessed and very pleased with our accepting of Autism and our own medical community. We have one of the best pediatricians in all the Twin Cities (truly, he has been voted one of the "top docs" the last 3 years). He is a pediatrician who has specialized with children with developmental disorders like Autism and other things like ADHD.
Dr. Kuperman has been there for us with frantic calls after hours, when we were first finding out about the possible Autism through our school district first, when they assessed him. He returns every call the same day. He takes time for Brent and I to come in alone to process and talk. He has referred us wherever needed with the autism, from speech/OT to a neurologist. We have covered all bases. He is so patient with Sam, even when he refuses to cooperate, when he forgets to use his words and screams instead, and when he is literally bouncing off his walls. We trust our medical community. We are getting things figured out. We are providing Sam with between 25-30 hours of therapy week including the speech and occupational therapy and the therapy he receives at school through early childhood special education. We give him lots of our home grown ABA therapy (which by the way, is not rocket science), lots of nurturing and most important, lots of love. We are figuring things out.
And........I guess my "writer's block" is gone. Look out!
Actually, I have been busy figuring things out. Taking Sam to therapy for speech and OT two entire afternoons a week starts to wear on you. Okay, how does that relate to my topic sentence. Well.........I am trying to figure things out as I am overwhelmed by the parent autism connections I have. While Brent and I have great support through agencies like Minnesota Autism Society and the Osseo School District, it is at North Memorial Hospital's Rehabilitation waiting/observation room that I find support that can overwhelm me at times. I spend two days a week freaked out and trying to figure things out.
First of all, the staff at North are awesome to say the least. They love and work so well with Sam. What happens is, that you wait with the same group of parents every week all afternoon. Many are there for various reasons, but at the time we go, the majority are also parents of autistic children.
I am trying to figure things out, because sometimes I feel like I am not doing enough for Sam, but yet in my heart I feel we are. There are parents there I have grown very close to, but differ so much in views with Autism. There are those on the whole "mercury" rampage. Those who only do biomed. Those who swear by hours of ABA therapy (one of the most proven successful therapies for autism), and those who have successfully done the gluten/casing free diets (of which we saw NO change in Sam when we did), and last but not least is "doping" (my term, it's Olympic time you know) their children with every vitamin therapy there is, close to chelation as well.
I really don't believe it was the immunizations for Sam. I knew something was well different with him well before the first MMR immunization. Sometimes I still even blame myself, wondering how much tuna I ate, what I exposed him to in utero. I don't know. I will never know what caused his autism, but I do know I am making peace with the fact that he has it. It doesn't mean everything is "peachy keen", but it means we accept it, and Brent and I say okay, let's go forward, not backward.
Okay, so I could go into how it seems the Autism community is becoming divided on the biomed/accept not cure Autism debate. We, however are blessed and very pleased with our accepting of Autism and our own medical community. We have one of the best pediatricians in all the Twin Cities (truly, he has been voted one of the "top docs" the last 3 years). He is a pediatrician who has specialized with children with developmental disorders like Autism and other things like ADHD.
Dr. Kuperman has been there for us with frantic calls after hours, when we were first finding out about the possible Autism through our school district first, when they assessed him. He returns every call the same day. He takes time for Brent and I to come in alone to process and talk. He has referred us wherever needed with the autism, from speech/OT to a neurologist. We have covered all bases. He is so patient with Sam, even when he refuses to cooperate, when he forgets to use his words and screams instead, and when he is literally bouncing off his walls. We trust our medical community. We are getting things figured out. We are providing Sam with between 25-30 hours of therapy week including the speech and occupational therapy and the therapy he receives at school through early childhood special education. We give him lots of our home grown ABA therapy (which by the way, is not rocket science), lots of nurturing and most important, lots of love. We are figuring things out.
And........I guess my "writer's block" is gone. Look out!
Wednesday, November 30, 2005
"I'm not naughty, I'm Autistic" (Journal #11)
While we will never make excuses for our parenting of Sam, it is true that a lot of his behavior looks naughty when he is having a hard day....when he is having what Brent and I call "An Autistic Day".
I am frequently reminded of what it looks like on many outings to the store, when I get those "glares":
- because he is tantruming because I won't let him walk, because he is a runner (runner awayer that is)
-because he is screaming and clawing my face because I won't stop the shopping cart so he can sit in the middle of an aisle and play with the carts wheels like he likes to do sometimes (forever, and I don't always have forever, although I could live at Target).
-because he is talking extremely loud saying the same sentence over and over again until he gets the response he wants from me.
Glares, yep, get them a lot. People are just rude. I get tired of them looking at me, like I can't control my child, or I have spoiled him and he always needs his own way.
We actually have a business card we have ready to give out at all times from the Autism Society of America. It reads simply this:
My child has a neurological disorder called Autism. He is not being naughty and we are not being bad parents for not reprimanding him. Children with Autism can often behave in an unpredictable manner because they find it hard to cope with many everyday situations. He is quite simply doing his best. Please be patient.
For more information about Autism please visit: www.autism-society.org
We are thankful we don't get those "glares" from family. They have been wonderful, supportive and so understanding. After coming off of family time at Thanksgiving, we really only had one big "melt down" as we call them. He appeared very "naughty" at the end. When Sam does things that appear to be intentional, like destroying his brother and cousins puzzles, it is that... intentional. However, what makes it different, is that it is intentional for reasons we don't know or always understand. For example, we do know that with Sam's SID (Sensory Integration Dysfunction, typical with Autism), that he likes to scream, he likes to be tackled by his brother, he likes the deep pressure. Therefore, many times he does mean things to his brother so he can scream...so his brother will tackle him out of anger. But, when it is interrupted by Brent or I picking up Sam (the only way to get him out of that behavior is to remove him from or redirect him from the situation), it takes his "plan, ritual, routine" that he wants to have happen and ruin it in his eyes. He will scream, hit, kick or whatever until he is tired. It does no good to talk to him when he is this angry, or to put him in time out. They don't understand time out.
What does work, is letting him have his melt down. Then, at a later date and time, creating a "social story" around what happened. Below is a web site that explains and gives good examples of what they are.
http://www.autism.org/stories.html
The only thing at this age is that social stories should be presented a little different. It is important to have the child be a part of you creating it and making pictures for the story, not just the words you read. (Thanks Lee Ann and Jenny for this advice and input).
Stacy, thank you so much for the compassion and love you showed when Sam had his "little outburst" at Thanksgiving. You asked exactly the right questions, which is what Brent and I are very open to, and want you all to do. Not only did you display true love and care, but you clearly asked what would be best in that situation if it happens again, and if everyone should leave the room. For that situation, it was just a matter of Brent removing him and restraining him until he was calm (sorry Kelly for Alexis getting knocked down by Brent coming through, but she would have gotten hurt worse by Sam throwing something again if he didn't take him right away), and a social story followed the next day at a time when he was very calm, and was also repeated. And Stacy, you were also very correct in that it is best if just one of us deal with him and give the directions, as the more people yelling, telling him what not to do or do, the more confusing it is for him. Also, if we yell or raise our voice, he does the same thing but it escalates even more.
Some things that we don't want family to always worry about or feel like you need to intervene (unless we are getting hurt), is that when he can't use his words correctly to make his request or point and he gets angry. For example, during Thanksgiving, there was a point that Sam was not getting understood and chose to hit me several times (just my legs). I was choosing to ignore him..... a) because it didn't hurt b) he is a little different than other kids in that if I were to have responded with "we don't hit", he will not care because he just has in his mind what he wants. If I respond to him hitting me, he is getting the attention from me that he wants so I will figure out what he is saying. He then uses me to communicate instead of himself. So, sometimes it is "wait time" and holding out that we are doing to see if he can figure it out. That is what we have always done, which we have been told, has probably helped in the great language he already has. So, when Brent and I are right there, witnessing the behavior, if we are not addressing it, there is a reason from experience that we aren't. The incident where he was hitting me, involved someone else telling him to stop, which in turn, solicited a response from Sam that was him screaming "no". He wanted me to talk to him (in his head). I wasn't responding, the other adult was, so he wasn't going to stop. He then started hitting more because he was mad. That same situation happens to me on a daily basis. When I tell him to stop, or to use friendly hands, 99% of the time it escalates. When I ignore it, it stops much more quickly and then he is calm and I can encourage him to use his words.
Below is an excerpt from another parent of an Autistic child who wrote a publication called "Living with Autism":
Over the years I have come to realize that most people do not know what autism is, yet they know what Down Syndrome is. Maybe this is because autistic children 'look' like everyone else. The thing is they aren't like everyone else. This is one of the things that makes bringing up an autistic child so hard: the lack of understanding, by others, of their condition.
Quite often an autistic child, in the eyes of an uninformed person, would be seen as naughty and out of control. The fact is these children don't know how to be 'naughty.' They cannot use their brain to manipulate a plan to misbehave. What they are seeing is a child who has a complete fear of the world. They don't understand the world as we would. They don't understand that if they cross the road without looking they could be run over.
I am frequently reminded of what it looks like on many outings to the store, when I get those "glares":
- because he is tantruming because I won't let him walk, because he is a runner (runner awayer that is)
-because he is screaming and clawing my face because I won't stop the shopping cart so he can sit in the middle of an aisle and play with the carts wheels like he likes to do sometimes (forever, and I don't always have forever, although I could live at Target).
-because he is talking extremely loud saying the same sentence over and over again until he gets the response he wants from me.
Glares, yep, get them a lot. People are just rude. I get tired of them looking at me, like I can't control my child, or I have spoiled him and he always needs his own way.
We actually have a business card we have ready to give out at all times from the Autism Society of America. It reads simply this:
My child has a neurological disorder called Autism. He is not being naughty and we are not being bad parents for not reprimanding him. Children with Autism can often behave in an unpredictable manner because they find it hard to cope with many everyday situations. He is quite simply doing his best. Please be patient.
For more information about Autism please visit: www.autism-society.org
We are thankful we don't get those "glares" from family. They have been wonderful, supportive and so understanding. After coming off of family time at Thanksgiving, we really only had one big "melt down" as we call them. He appeared very "naughty" at the end. When Sam does things that appear to be intentional, like destroying his brother and cousins puzzles, it is that... intentional. However, what makes it different, is that it is intentional for reasons we don't know or always understand. For example, we do know that with Sam's SID (Sensory Integration Dysfunction, typical with Autism), that he likes to scream, he likes to be tackled by his brother, he likes the deep pressure. Therefore, many times he does mean things to his brother so he can scream...so his brother will tackle him out of anger. But, when it is interrupted by Brent or I picking up Sam (the only way to get him out of that behavior is to remove him from or redirect him from the situation), it takes his "plan, ritual, routine" that he wants to have happen and ruin it in his eyes. He will scream, hit, kick or whatever until he is tired. It does no good to talk to him when he is this angry, or to put him in time out. They don't understand time out.
What does work, is letting him have his melt down. Then, at a later date and time, creating a "social story" around what happened. Below is a web site that explains and gives good examples of what they are.
http://www.autism.org/stories.html
The only thing at this age is that social stories should be presented a little different. It is important to have the child be a part of you creating it and making pictures for the story, not just the words you read. (Thanks Lee Ann and Jenny for this advice and input).
Stacy, thank you so much for the compassion and love you showed when Sam had his "little outburst" at Thanksgiving. You asked exactly the right questions, which is what Brent and I are very open to, and want you all to do. Not only did you display true love and care, but you clearly asked what would be best in that situation if it happens again, and if everyone should leave the room. For that situation, it was just a matter of Brent removing him and restraining him until he was calm (sorry Kelly for Alexis getting knocked down by Brent coming through, but she would have gotten hurt worse by Sam throwing something again if he didn't take him right away), and a social story followed the next day at a time when he was very calm, and was also repeated. And Stacy, you were also very correct in that it is best if just one of us deal with him and give the directions, as the more people yelling, telling him what not to do or do, the more confusing it is for him. Also, if we yell or raise our voice, he does the same thing but it escalates even more.
Some things that we don't want family to always worry about or feel like you need to intervene (unless we are getting hurt), is that when he can't use his words correctly to make his request or point and he gets angry. For example, during Thanksgiving, there was a point that Sam was not getting understood and chose to hit me several times (just my legs). I was choosing to ignore him..... a) because it didn't hurt b) he is a little different than other kids in that if I were to have responded with "we don't hit", he will not care because he just has in his mind what he wants. If I respond to him hitting me, he is getting the attention from me that he wants so I will figure out what he is saying. He then uses me to communicate instead of himself. So, sometimes it is "wait time" and holding out that we are doing to see if he can figure it out. That is what we have always done, which we have been told, has probably helped in the great language he already has. So, when Brent and I are right there, witnessing the behavior, if we are not addressing it, there is a reason from experience that we aren't. The incident where he was hitting me, involved someone else telling him to stop, which in turn, solicited a response from Sam that was him screaming "no". He wanted me to talk to him (in his head). I wasn't responding, the other adult was, so he wasn't going to stop. He then started hitting more because he was mad. That same situation happens to me on a daily basis. When I tell him to stop, or to use friendly hands, 99% of the time it escalates. When I ignore it, it stops much more quickly and then he is calm and I can encourage him to use his words.
Below is an excerpt from another parent of an Autistic child who wrote a publication called "Living with Autism":
Over the years I have come to realize that most people do not know what autism is, yet they know what Down Syndrome is. Maybe this is because autistic children 'look' like everyone else. The thing is they aren't like everyone else. This is one of the things that makes bringing up an autistic child so hard: the lack of understanding, by others, of their condition.
'Research has found that parents and families of a child with Autism are under greater stress than those with Down Syndrome or who are physically or mentally handicapped.'
-Autism News, Sept 2002.
Quite often an autistic child, in the eyes of an uninformed person, would be seen as naughty and out of control. The fact is these children don't know how to be 'naughty.' They cannot use their brain to manipulate a plan to misbehave. What they are seeing is a child who has a complete fear of the world. They don't understand the world as we would. They don't understand that if they cross the road without looking they could be run over.
Autistic children have to be taught EVERYTHING. Nothing comes naturally to an autistic child. 'It is important that everyone - parents, extended family, teachers and friends - understand that children and adults with autism are not like average people. The do not think in the same way and they should not be 'treated' like everyone else.' -Dr. Richard Eisenmajer (psychologist)
So.........even though Sam will look naughty sometimes or many times, how we will handle it may be a little different than when Zach or others are naughty. If Sam does something mean to one of his cousins, please remember that if we don't consequence him in front of you or in a way that you felt was properly compensated, please don't think that we didn't care or didn't think it deserved a consequence. Just know that we feel just as bad about what he did, but what we do with Sam may reflect it a little differently.
While I would never put one of these pins on Sam, people actually make these for parents because of the way their child looks and behaves in public:
I think Brent and I will stick with the cards. We love you all and thank you so much for being understanding, for not being afraid to ask us questions, for not acting like he isn't Autistic, he is, and he will have to be treated differently, and you have exemplified that.....................and for not being judgmental. We love you all.
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