Showing posts with label Autism. Show all posts
Showing posts with label Autism. Show all posts
Tuesday, November 15, 2016
Politically Correct words
So today on one of the facebook pages I follow, Chicks on the right, there was a discussion on the use of the word "TARD". It is the new acronym for the protesters and rioters of Trump. Apparently these ladies are the ones who coined it. And they were defending it. Even though it is offensive to some. One of the women even has a mentally challenged son. I pointed out to them why it is offensive. I grew up in the 60s and 70s. My brother had Down's Syndrome and the mental capacity of a 6 month old. During that era, he was denied access to school, denied access to doctors, called names including "retard", and generally disregarded as a person. It was a hurtful time and that word was meant to hurt not describe a condition. I pointed this out to the chicks on the right blogger. She never did get it. She said it was wrong to call them that but okay to use the word. It's not. Why do I know? Because it is disrespectful towards all disabled people. Whether they hear you say the word or not. It hurts them. I couldn't get that through the blogger's head. How sad that such ignorance still exists today. My son has not faced half of the ignorance my brother faced. Thank God. We have come far in that respect. School services and the requirement to serve ALL people including the disabled--we can thank John F Kennedy and the democrats after him. As for that facebook page, I think I will unfollow. They won't miss me but I will feel better for not reading about such ignorance.
Tuesday, March 5, 2013
Chapter 2--Confusion and Chaos--What next after that diagnosis of autistic-like
"In the Beginning" was my first installment of my son's journey through Autism-that journey through the hundred acre woods. You can find that chapter at the beginning of my blog. I have had much going on in my life since I started this blog and until now have not had an opportunity to continue to write about Caleb's journey.
His journey is all the whole family's journey so please --be patient!!
Caleb was first diagnosed as Austic-like when he was 2 1/2 years old. I didn't mention that in the first chapter of this saga. It was confusing to have your child diagnosed as autistic-like. It's like having them diagnosed as being boy -like or blonde-like or blind-like. It was 1992 and Autism did not have the momentum or exposure that it does today. The pediatric neurologist that diagnosed Caleb had had very little experience with Autism and therefore was not sure and was also reluctant to stick a label on Caleb (those were his words). For me, it was not helpful.
First of all, I had no idea what autism was. I had watched "Rain Man" but Dustin Hoffman portrayed a grown man. Caleb was only 2 1/2 and didn't behave like the character that was portrayed in the movie.
There was no internet in those days. I couldn't just run and google the word "autism". Fortunately, the early intervention workers that had come to work with Caleb gave me the address of the Autism Society of America. I wrote them and received information back from them. In that information was not only a definition of autism but a booklet that had been compiled of other parents' stories. Those stories are where I found the most information and the most solace.
As I read and delved into this world called autism, I found out one thing-- Caleb was not autistic-like. Caleb had autism. There was no "like" about it. Though Caleb made good eye contact with me, he did not make eye contact with anyone else. He didn't speak. He focused on objects and found great pleasure in twirling and spinning them. He also did not play with toys in a normal manner. His idea of play was lining up his toys in front of himself and doing a strange dance around them. When spoken to, Caleb never made any indication that he heard or understood. And though he never came when his name was called, he did come when his favorite cartoon came on the tv. He also knew how to operate the VCR and would rewind his favorite cartoon over and over and over again.
Caleb's favorite cartoon was Winnie the Pooh and the Blustery Day. And as time progressed he became obsessed with all things Pooh. He collected Poohs, he looked at books about Pooh, and he watched cartoons about Pooh. Caleb lived in the hundred acre woods. As a side note--Caleb is 23 now and he still lives in the hundred acre woods. This is his room.
With the knowledge that Caleb was indeed autistic, I knew I needed a formal diagnosis for him as he was soon turning three and would be entering the public school system. Unfortunately that diagnosis would have to wait. I was 8 months pregnant awaiting the birth of our daughter , Hannah.
For the first six months after Hannah was born, I did not have time to think about Caleb's autism and his need to have a formal diagnosis. I was feeling slightly overwhelmed by having three children under the age of 5, two of who were in diapers. Caleb was not even close to being potty trained and frankly at that point in time I didn't even care. I was barely treading water and felt like I was sinking fast. So Caleb's diagnosis would have to wait.
Finally in May of 1993, my husband and I were able to take Caleb San to Francisco to receive a formal diagnosis. My parents watched the other two children as we loaded up the car and began the long drive.
After much research, I had decided that the Langley Porter Psychiatric Institute in San Francisco would be the best place to take Caleb and have him diagnosed. There were many doctors there who were leading experts in the field of Autism at that time. After a long time spent observing him, the doctors came back with a diagnosis and recommendations for our school district. Caleb was in fact moderately autistic and mildly retarded. That was their diagnosis.
I have to tell you, I never agreed with the mildly retarded part. I still don't. How do you separate the two? Without the autism, would Caleb have still been retarded? Over the years, I can tell you--NO. Caleb would prove his intelligence over and over and over again as the years progressed. At that time , though, I resented the added diagnosis of mental retardation and would never address it.
Chapter 3 in this saga will be continued later.....
His journey is all the whole family's journey so please --be patient!!
Caleb was first diagnosed as Austic-like when he was 2 1/2 years old. I didn't mention that in the first chapter of this saga. It was confusing to have your child diagnosed as autistic-like. It's like having them diagnosed as being boy -like or blonde-like or blind-like. It was 1992 and Autism did not have the momentum or exposure that it does today. The pediatric neurologist that diagnosed Caleb had had very little experience with Autism and therefore was not sure and was also reluctant to stick a label on Caleb (those were his words). For me, it was not helpful.
First of all, I had no idea what autism was. I had watched "Rain Man" but Dustin Hoffman portrayed a grown man. Caleb was only 2 1/2 and didn't behave like the character that was portrayed in the movie.
There was no internet in those days. I couldn't just run and google the word "autism". Fortunately, the early intervention workers that had come to work with Caleb gave me the address of the Autism Society of America. I wrote them and received information back from them. In that information was not only a definition of autism but a booklet that had been compiled of other parents' stories. Those stories are where I found the most information and the most solace.
As I read and delved into this world called autism, I found out one thing-- Caleb was not autistic-like. Caleb had autism. There was no "like" about it. Though Caleb made good eye contact with me, he did not make eye contact with anyone else. He didn't speak. He focused on objects and found great pleasure in twirling and spinning them. He also did not play with toys in a normal manner. His idea of play was lining up his toys in front of himself and doing a strange dance around them. When spoken to, Caleb never made any indication that he heard or understood. And though he never came when his name was called, he did come when his favorite cartoon came on the tv. He also knew how to operate the VCR and would rewind his favorite cartoon over and over and over again.
Caleb's favorite cartoon was Winnie the Pooh and the Blustery Day. And as time progressed he became obsessed with all things Pooh. He collected Poohs, he looked at books about Pooh, and he watched cartoons about Pooh. Caleb lived in the hundred acre woods. As a side note--Caleb is 23 now and he still lives in the hundred acre woods. This is his room.
For the first six months after Hannah was born, I did not have time to think about Caleb's autism and his need to have a formal diagnosis. I was feeling slightly overwhelmed by having three children under the age of 5, two of who were in diapers. Caleb was not even close to being potty trained and frankly at that point in time I didn't even care. I was barely treading water and felt like I was sinking fast. So Caleb's diagnosis would have to wait.
Finally in May of 1993, my husband and I were able to take Caleb San to Francisco to receive a formal diagnosis. My parents watched the other two children as we loaded up the car and began the long drive.
After much research, I had decided that the Langley Porter Psychiatric Institute in San Francisco would be the best place to take Caleb and have him diagnosed. There were many doctors there who were leading experts in the field of Autism at that time. After a long time spent observing him, the doctors came back with a diagnosis and recommendations for our school district. Caleb was in fact moderately autistic and mildly retarded. That was their diagnosis.
I have to tell you, I never agreed with the mildly retarded part. I still don't. How do you separate the two? Without the autism, would Caleb have still been retarded? Over the years, I can tell you--NO. Caleb would prove his intelligence over and over and over again as the years progressed. At that time , though, I resented the added diagnosis of mental retardation and would never address it.
Chapter 3 in this saga will be continued later.....
Sunday, December 16, 2012
Let's talk about Autism . It is NOT a Mental Illness. A must read for everyone!!
By now, everyone who has a television, radio, computer, or mouth knows about the tragedy at Sandy Hook Elementary School in Connecticut. There is no argument about the senseless killings of small children and their teachers. What there is an argument about is of course the same one that has been circulating and dividing for years: Gun control.
I don't want to talk about gun control. We all have opinions about it--for or against. However, the conversation that should be taking place is that of mental illness and mental health services--not only for the person suffering from the disease but from the family members who often suffer in silence.
When my son, Caleb, was first diagnosed with Autism, most of the books out there dealing with the disorder still referred to autism as childhood schizophenia. Basically, a child with autism was considered mentally ill and the mother was to blame. It was because she was cold and indifferent. (sarcasm here).
The following is taken from Web MD and a brief history on the "origins" of Autism.
Eugen Bleuler, a Swiss psychiatrist, was the first person to use the term. He started using it around 1911 to refer to one group of symptoms of schizophrenia.
In the 1940s, researchers in the United States began to use the term "autism" to describe children with emotional or social problems. Leo Kanner, a doctor from Johns Hopkins University, used it to describe the withdrawn behavior of several children he studied. At about the same time, Hans Asperger, a scientist in Germany, identified a similar condition that’s now called Asperger’s syndrome.
Autism and schizophrenia remained linked in many researchers’ minds until the 1960s. It was only then that medical professionals began to have a separate understanding of autism in children.
From the 1960s through the 1970s, research into treatments for autism focused on medications such as LSD, electric shock, and behavioral change techniques. The latter relied on pain and punishment.
During the 1980s and 1990s, the role of behavioral therapy and the use of highly controlled learning environments emerged as the primary treatments for many forms of autism and related conditions. Currently, the cornerstone of autism therapy is behavioral therapy. Other treatments are added as needed.
Other symptoms linked to autism may include unusual behaviors in any of these areas:
Ok, so that's a brief synopsis of autism. But that little blurp or the other blurps you read about the disorder are not going to tell you about living with the disorder each and every day. They are not going to tell you the hell that most families experience not once, not twice , but on a daily basis for months and often years on end. As I continue Caleb's story in subsequent blogs, I'll relate some of the hell we went through. But for today I want to focus on the obsessiveness of the disorder.
First of all, before I go on, I want everyone to understand, autism is NOT mental illness. It is a disorder. It is not schizophrenia. It is a neurological disorder that no one has found a cure for (regardless of what some say).
Second, the one thing you can count on with autism is that you cannot count on autism and it's symptoms and behaviors being the same in every person that has the disorder. One may be verbal; another may not be. One may be highly intelligent, and another may have mental retardation. One may be basically happy while another may be basically despondent and sad. EVERY SINGLE PERSON WITH AUTISM HAS DIFFERENT SYMPTOMS AND DIFFERENT REACTIONS. Therefore, it is difficult to treat autism.
Third, one thing you CAN count on with autism is that ritualistic behaviors and obsessions are unilaterally present. Over my son's 23 years I have not met one person with autism who did not have certain obsessive behaviors and rituals that were performed and perseverated upon.
We are fortunate. Our son is obsessed with all things Disney. In particular, he is obsessed with Winnie the Pooh. Winnie the Pooh is gentle and kind and not violent--ever. Some people with autism are obsessed with purses, or trains, church, or whatever. However, some are obsessed with superheroes, and yes some are obsessed with video games--violent video games. And this can be a problem.
You must understand Autism to understand why this is important. As described above, persons with autism are interested in objects. Well, it goes further than that. They tend to TREAT people like objects. They completely lack empathy. They aren't being rude or insensitive. It is just not in their nature to have empathy for people--at all--ever.
Now challenge their obsession; take it away; destroy it; then you might get some emotion. But for people-no. Here's an example:
Several years ago, our dog, Sunny, was killed in a car accident. Caleb loved that dog. That dog slept on his bed. But when Sunny was killed, Caleb laughed and hooted about it for days. We would tell him it was sad and for a time he would put on a frown but then he would go back to laughing about Sunny's death. And to this day, three years later, Caleb will still laugh about how Sunny's head was squished by a car.When my father in law died, Caleb laughed about that. When he visited my mother in the nursing home and saw her crying in pain (she is dying from cancer), he laughed. It's inappropriate--yes--to us. But to him who lacks empathy and understanding of empathy, it is perfectly normal.
Caleb does cry. If you take away his dvd's or his toys or restrict him from the television, he will have big old tears pouring down his face. Challenge his "world" and he is terribly unhappy. Those who know Caleb love him. Most people would describe Caleb as gentle and kind. And he is. But he is still autistic and he will never act in a way we think he should. People are objects --plain and simple.
For better understanding of autism, read Temple Grandin's book "Thinking in Pictures: My life with Autism". She is a person who has autism and can artfully explain it.
Now why did I just write about all of this? Because the media is reporting that Adam Lanza, the shooter at Sandy Hook Elementary School, suffered from Asperger's. If that is true, then he would have seen people as objects. I don't know (and we may never know) what caused him to pick up a gun and decide to kill 20 children and 6 adults that day but I do know if he was a player of video games, if he was obsessed with them, the games would have been real to him. It is conceivable on every level of autism that he would carry out what he was watching on his games-because the people would only be objects to him and the games would be real. This does not mean that all people with autism are going to pick up a gun and harm others. I am not saying that at all and I do not want anyone out there to be afraid of people with Autism. That would be stupid and a step back for our society. I am merely trying to offer an explanation from an autistic point of view.
It will be interesting to see in days to come, if Adam Lanza's mother had reached out for help and was turned away. Services for children and adults with autism are STILL spotty at best. Unlike other disabilities, adults with autism have difficulty interacting with others, maintaining employment, and developing any meaningful friendships. Many agencies are less than thrilled to offer services to adults with autism--especially those who display violent tendencies.
My husband and I are fortunate. Even though we live in a small town, services over the years have been good. Caleb has had wonderful, caring teachers through the years who made sure that he was integrated well with peers his own age. We are also fortunate that for the most part, Caleb is happy and easy going. He does still have rituals and behaviors that he must perform (like wearing pink on Sunday's--he has six of the same pink shirts) but most of his behaviors are harmless and only annoying to us, his family. Other families are not so fortunate. Many children with autism become unhappy adults with autism. Hormones tend to play havoc with their moods and behaviors. Their families often find them difficult to deal with and also find no where and no one to help them.
Although the natural tendency is for society to judge Adam Lanza and his mother harshly and call them monsters, please be careful in your judgements. What happened was wrong and a tragedy. However, you do not know the hell that either Adam or his mother were suffering from. You do not know if they reached out for help only to be turned away again. Remember, they too lost their lives and only by the Grace of God go we.
Disclaimer: I WILL delete any and all posts that are rude, ignorant, or basically not helpful so please before you comment on this blog, think about that. This blog was intended to uplift not harm. Thanks!
I don't want to talk about gun control. We all have opinions about it--for or against. However, the conversation that should be taking place is that of mental illness and mental health services--not only for the person suffering from the disease but from the family members who often suffer in silence.
When my son, Caleb, was first diagnosed with Autism, most of the books out there dealing with the disorder still referred to autism as childhood schizophenia. Basically, a child with autism was considered mentally ill and the mother was to blame. It was because she was cold and indifferent. (sarcasm here).
The following is taken from Web MD and a brief history on the "origins" of Autism.
"Where Did the Term "Autism" Come From?
The word "autism," which has been in use for about 100 years, comes from the Greek word "autos," meaning "self." The term describes conditions in which a person is removed from social interaction -- hence, an isolated self.Eugen Bleuler, a Swiss psychiatrist, was the first person to use the term. He started using it around 1911 to refer to one group of symptoms of schizophrenia.
In the 1940s, researchers in the United States began to use the term "autism" to describe children with emotional or social problems. Leo Kanner, a doctor from Johns Hopkins University, used it to describe the withdrawn behavior of several children he studied. At about the same time, Hans Asperger, a scientist in Germany, identified a similar condition that’s now called Asperger’s syndrome.
Autism and schizophrenia remained linked in many researchers’ minds until the 1960s. It was only then that medical professionals began to have a separate understanding of autism in children.
From the 1960s through the 1970s, research into treatments for autism focused on medications such as LSD, electric shock, and behavioral change techniques. The latter relied on pain and punishment.
During the 1980s and 1990s, the role of behavioral therapy and the use of highly controlled learning environments emerged as the primary treatments for many forms of autism and related conditions. Currently, the cornerstone of autism therapy is behavioral therapy. Other treatments are added as needed.
What Are the Symptoms of Autism?
One symptom common to all types of autism is an inability to easily communicate and interact with others. In fact, some people with autism are unable to communicate at all. Others may have difficulty interpreting body language or holding a conversation.Other symptoms linked to autism may include unusual behaviors in any of these areas:
- Interest in objects or specialized information
- Reactions to sensations
Ok, so that's a brief synopsis of autism. But that little blurp or the other blurps you read about the disorder are not going to tell you about living with the disorder each and every day. They are not going to tell you the hell that most families experience not once, not twice , but on a daily basis for months and often years on end. As I continue Caleb's story in subsequent blogs, I'll relate some of the hell we went through. But for today I want to focus on the obsessiveness of the disorder.
First of all, before I go on, I want everyone to understand, autism is NOT mental illness. It is a disorder. It is not schizophrenia. It is a neurological disorder that no one has found a cure for (regardless of what some say).
Second, the one thing you can count on with autism is that you cannot count on autism and it's symptoms and behaviors being the same in every person that has the disorder. One may be verbal; another may not be. One may be highly intelligent, and another may have mental retardation. One may be basically happy while another may be basically despondent and sad. EVERY SINGLE PERSON WITH AUTISM HAS DIFFERENT SYMPTOMS AND DIFFERENT REACTIONS. Therefore, it is difficult to treat autism.
Third, one thing you CAN count on with autism is that ritualistic behaviors and obsessions are unilaterally present. Over my son's 23 years I have not met one person with autism who did not have certain obsessive behaviors and rituals that were performed and perseverated upon.
We are fortunate. Our son is obsessed with all things Disney. In particular, he is obsessed with Winnie the Pooh. Winnie the Pooh is gentle and kind and not violent--ever. Some people with autism are obsessed with purses, or trains, church, or whatever. However, some are obsessed with superheroes, and yes some are obsessed with video games--violent video games. And this can be a problem.
You must understand Autism to understand why this is important. As described above, persons with autism are interested in objects. Well, it goes further than that. They tend to TREAT people like objects. They completely lack empathy. They aren't being rude or insensitive. It is just not in their nature to have empathy for people--at all--ever.
Now challenge their obsession; take it away; destroy it; then you might get some emotion. But for people-no. Here's an example:
Several years ago, our dog, Sunny, was killed in a car accident. Caleb loved that dog. That dog slept on his bed. But when Sunny was killed, Caleb laughed and hooted about it for days. We would tell him it was sad and for a time he would put on a frown but then he would go back to laughing about Sunny's death. And to this day, three years later, Caleb will still laugh about how Sunny's head was squished by a car.When my father in law died, Caleb laughed about that. When he visited my mother in the nursing home and saw her crying in pain (she is dying from cancer), he laughed. It's inappropriate--yes--to us. But to him who lacks empathy and understanding of empathy, it is perfectly normal.
Caleb does cry. If you take away his dvd's or his toys or restrict him from the television, he will have big old tears pouring down his face. Challenge his "world" and he is terribly unhappy. Those who know Caleb love him. Most people would describe Caleb as gentle and kind. And he is. But he is still autistic and he will never act in a way we think he should. People are objects --plain and simple.
For better understanding of autism, read Temple Grandin's book "Thinking in Pictures: My life with Autism". She is a person who has autism and can artfully explain it.
Now why did I just write about all of this? Because the media is reporting that Adam Lanza, the shooter at Sandy Hook Elementary School, suffered from Asperger's. If that is true, then he would have seen people as objects. I don't know (and we may never know) what caused him to pick up a gun and decide to kill 20 children and 6 adults that day but I do know if he was a player of video games, if he was obsessed with them, the games would have been real to him. It is conceivable on every level of autism that he would carry out what he was watching on his games-because the people would only be objects to him and the games would be real. This does not mean that all people with autism are going to pick up a gun and harm others. I am not saying that at all and I do not want anyone out there to be afraid of people with Autism. That would be stupid and a step back for our society. I am merely trying to offer an explanation from an autistic point of view.
It will be interesting to see in days to come, if Adam Lanza's mother had reached out for help and was turned away. Services for children and adults with autism are STILL spotty at best. Unlike other disabilities, adults with autism have difficulty interacting with others, maintaining employment, and developing any meaningful friendships. Many agencies are less than thrilled to offer services to adults with autism--especially those who display violent tendencies.
My husband and I are fortunate. Even though we live in a small town, services over the years have been good. Caleb has had wonderful, caring teachers through the years who made sure that he was integrated well with peers his own age. We are also fortunate that for the most part, Caleb is happy and easy going. He does still have rituals and behaviors that he must perform (like wearing pink on Sunday's--he has six of the same pink shirts) but most of his behaviors are harmless and only annoying to us, his family. Other families are not so fortunate. Many children with autism become unhappy adults with autism. Hormones tend to play havoc with their moods and behaviors. Their families often find them difficult to deal with and also find no where and no one to help them.
Although the natural tendency is for society to judge Adam Lanza and his mother harshly and call them monsters, please be careful in your judgements. What happened was wrong and a tragedy. However, you do not know the hell that either Adam or his mother were suffering from. You do not know if they reached out for help only to be turned away again. Remember, they too lost their lives and only by the Grace of God go we.
Disclaimer: I WILL delete any and all posts that are rude, ignorant, or basically not helpful so please before you comment on this blog, think about that. This blog was intended to uplift not harm. Thanks!
Thursday, November 1, 2012
In the beginning...
As I stated with my initial post, this blog is going to be about everything. However, for many years I have wanted to write a book about my experience as a mother of a child with Autism. Many over the years have encouraged me to do so. It always seemed so overwhelming to write a book but yet I do have experiences that I would like to share. A blog seems to be the perfect outlet--at least for now - for me. So I will give you my experiences as a mom with a child who has Autism. Also, I will only blog about Caleb once in awhile. There is so much more to my life. So much more.
As a disclaimer, I am just a mom. I am not a licensed anything--(except I do hold a license to teach elementary education but that's another story and I have not taught fulltime in many years). My experiences are mine alone and are not intended to diagnose or treat anyone anywhere. I am merely sharing. Take away what you will and share with others who may be in need of knowledge. Many years ago, when Caleb was first diagnosed the information age was not as available as it is now. I longed for information and to connect with someone who was going through what I was. I hope this helps someone out there who feels the same way. If you are that someone reading this or know someone who needs this, please have them comment here and we can connect through private messaging. No one should feel alone on this path of Autism. I am always more than happy to share what I can.
Caleb was born in 1989 a normal, although large, 10 lb baby boy. He was delivered by C section and was so big that the nurses had a betting pool as to how big he was going to be! He was the second child and boy I had. My first child, Zach, was normal size at birth, and so Caleb's size was totally unexpected.
As Caleb grew, he developed quite normally. He passed all the physical milestones. Later after his diagnosis, I would look back and see small subtle clues to his impending Autism. He cried when I left him from a very young age. He was only a few weeks old when I noticed this. My mother cared for him for a few hours while I shopped and he cried from the time I left until I returned. Once I was home, he stopped. He was not a fussy baby at all so this behavior was perplexing. He would do this with everyone-no matter who cared for him including his own father
.
Also, although Caleb walked early. climbed early, ran early; he did not point at objects like other 9 month old babies did. He never waved bye-bye no matter how hard we tried to teach him. None of this really bothered my husband and I. I was busy working and caring for 2 young children and motherhood didn't really allow me to think about small nuisances.
When Caleb was 2 yrs old, he contracted rotovirus- a nasty disease that landed him in the hospital for four days. It was during that time, I really began to wonder exactly what was wrong with him. He still did not talk or make any sounds that even sounded close to words. He did not look at you when you spoke to him. He never came when his name was called. As the nurses in the hospital attempted to engage him , and couldn't, I knew something was off. But what?
I should have taken him to a doctor at that point. But I didn't. I pondered his behavior. Every morning, I awoke and prayed to God that he would speak that day. I felt that if he just talked, all would be fine. He never uttered a word. My husband and I waited six more months to do anything.
An aunt of my husband's was visiting and noticed Caleb's odd behavior. She thought we should have his hearing checked. He must be hearing impaired. As odd as it sounds, I prayed he was just hearing impaired. I knew if it were something more, it must be bad.
So we took him to an audiologist who performed various tests on him. He was not hearing impaired. As a matter of fact, the audiologist said he had extraordinary hearing and could hear sounds others couldn't! So now what, we asked her? She referred us to a state program that served children under 3 years old. We contacted them and when the social worker came out, she assessed Caleb for several hours.
Very gently the worker suggested that Caleb could possibly have autism. She then referred us out to a pediatric neurologist. After his 5 hour assessment, he made the diagnosis. Caleb had autism. My life and my family's life changed that day. I thought it was over. I was devastated. Little did I know....
I'm going to end my story there for now. I will resume it in another blog. For those of you out there that have just had your child diagnosed with autism or within the last few years, I want you to know, your life is not over. It is not the end of anything. I know you are hurting now. I know your grief. I've been there. You are going to take another path now, but it is not a bad path, just a different path. There will be days when the path is rocky and you will want to give up. But there will be joy too. I promise you. There will be joy.
You won't understand this now but someday you will: If I could give a magic pill to Caleb that would instantly cure his Autism, I would not give it to him. It would change everything I have experienced and it would change who he is. A mother with an autistic adult son told me that once when Caleb was 3 and I did not understand. But now that Caleb is 23 , I totally understand. And I concur!!!
As a disclaimer, I am just a mom. I am not a licensed anything--(except I do hold a license to teach elementary education but that's another story and I have not taught fulltime in many years). My experiences are mine alone and are not intended to diagnose or treat anyone anywhere. I am merely sharing. Take away what you will and share with others who may be in need of knowledge. Many years ago, when Caleb was first diagnosed the information age was not as available as it is now. I longed for information and to connect with someone who was going through what I was. I hope this helps someone out there who feels the same way. If you are that someone reading this or know someone who needs this, please have them comment here and we can connect through private messaging. No one should feel alone on this path of Autism. I am always more than happy to share what I can.
Caleb was born in 1989 a normal, although large, 10 lb baby boy. He was delivered by C section and was so big that the nurses had a betting pool as to how big he was going to be! He was the second child and boy I had. My first child, Zach, was normal size at birth, and so Caleb's size was totally unexpected.
As Caleb grew, he developed quite normally. He passed all the physical milestones. Later after his diagnosis, I would look back and see small subtle clues to his impending Autism. He cried when I left him from a very young age. He was only a few weeks old when I noticed this. My mother cared for him for a few hours while I shopped and he cried from the time I left until I returned. Once I was home, he stopped. He was not a fussy baby at all so this behavior was perplexing. He would do this with everyone-no matter who cared for him including his own father
.
Also, although Caleb walked early. climbed early, ran early; he did not point at objects like other 9 month old babies did. He never waved bye-bye no matter how hard we tried to teach him. None of this really bothered my husband and I. I was busy working and caring for 2 young children and motherhood didn't really allow me to think about small nuisances.
When Caleb was 2 yrs old, he contracted rotovirus- a nasty disease that landed him in the hospital for four days. It was during that time, I really began to wonder exactly what was wrong with him. He still did not talk or make any sounds that even sounded close to words. He did not look at you when you spoke to him. He never came when his name was called. As the nurses in the hospital attempted to engage him , and couldn't, I knew something was off. But what?
I should have taken him to a doctor at that point. But I didn't. I pondered his behavior. Every morning, I awoke and prayed to God that he would speak that day. I felt that if he just talked, all would be fine. He never uttered a word. My husband and I waited six more months to do anything.
An aunt of my husband's was visiting and noticed Caleb's odd behavior. She thought we should have his hearing checked. He must be hearing impaired. As odd as it sounds, I prayed he was just hearing impaired. I knew if it were something more, it must be bad.
So we took him to an audiologist who performed various tests on him. He was not hearing impaired. As a matter of fact, the audiologist said he had extraordinary hearing and could hear sounds others couldn't! So now what, we asked her? She referred us to a state program that served children under 3 years old. We contacted them and when the social worker came out, she assessed Caleb for several hours.
Very gently the worker suggested that Caleb could possibly have autism. She then referred us out to a pediatric neurologist. After his 5 hour assessment, he made the diagnosis. Caleb had autism. My life and my family's life changed that day. I thought it was over. I was devastated. Little did I know....
I'm going to end my story there for now. I will resume it in another blog. For those of you out there that have just had your child diagnosed with autism or within the last few years, I want you to know, your life is not over. It is not the end of anything. I know you are hurting now. I know your grief. I've been there. You are going to take another path now, but it is not a bad path, just a different path. There will be days when the path is rocky and you will want to give up. But there will be joy too. I promise you. There will be joy.
You won't understand this now but someday you will: If I could give a magic pill to Caleb that would instantly cure his Autism, I would not give it to him. It would change everything I have experienced and it would change who he is. A mother with an autistic adult son told me that once when Caleb was 3 and I did not understand. But now that Caleb is 23 , I totally understand. And I concur!!!
Wednesday, October 31, 2012
Winnie the Pooh is a big bee for Halloween!!
The name of this blog is named after him. He became obsessed with Winnie the Pooh around the age of 2.
Our lives really have been in the Hundred Acre Woods. I'll write about it sometime--especially for those of you who have little knowledge of Autism and/or living with someone who has it or for those of you moms and dads that just came upon this blog and are looking for answers.
However for today, I have no answers for you. It is Halloween, and Caleb dressed up for work. He's the only one still living at home AND the only one in our family who still dresses up for Halloween. I complain (and loudly) every year that I still have to make stupid costumes. I'm a "bah humbug" when it comes to Halloween. I don't like the trick or treating, or dressing up, or eating and giving candy. But for Caleb, who sees life through the eyes of a 5 year old, life is still simple, and fun.
So Buzzzz and TRICK OR TREAT!!!!
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