With Caleb life is definitely a journey. Much of me is relieved there has been a diagnosis that makes sense, fits much of what has been going on with him. Now it is just a matter of patience as therapy has begun and his Autism specialist begins to work with him on his behavior and learning about others he interacts with at school, home and everywhere else.
Something I am thinking about doing for Caleb is Karate. I found out through the TEAM centers that Green's Karate in Hixson, TN teaches Karate to children with Autism. In fact, Corey Green has been doing this for quite sometime and has been featured on local and national television news stations. When we visited Green's Karate, Corey showed us the clip from CNN featuring one of his students who has Autism. He works with Lee University in Cleveland, has written a book and working on another and will soon be traveling across the U.S. to help other Karate schools integrate classes in for children with Autism.
Taking Caleb to try out Karate was a relief. I didn't feel on edge because I knew Mr. Green could deal with Caleb. I have tried T-Ball with Caleb and always felt on edge. Parents looked at me as if my child was out of control and I was a careless parent. I tried Bear Scouts with him and felt on edge. As a matter of fact, he and I felt out of place. I have wanted so much for Caleb to be involved in some extracurricular activity.
It means a lot to be around people who understand children with Autism and especially behavioral issues. For years I have been treated as if I am a neglectful parent. Sometimes when Caleb has done things parents have become infuriated with me. I even had one who wanted to pick a fight which I refused to play into. Others have shunned me.
The greatest challenge is dealing with people who want to label Caleb. This has happened at school, church and home. Most people would not know it by looking at Caleb that he is a high functioning Autistic child. There are people who automatically say he is hyper and must have ADHD. Amazing how many people are instant doctors.
Caleb's teacher this year has grown tired of dealing with him and it's obvious when talking with her and reading his "Kid Mail" every day. It does bother me because I felt we were both on the same page since the beginning of the school year. She knows I am doing all I can to help Caleb. I guess she is expecting that his behavior would have shown improvement by now. All I can do for now is take it day by day with him. Everyday I am learning something from him.
Showing posts with label Pervasive Development Disorder. Show all posts
Showing posts with label Pervasive Development Disorder. Show all posts
Saturday, March 12, 2011
Wednesday, March 9, 2011
Autism
Everyday is like a roller coaster with Caleb. You never know if he is going to wake up happy or on the wrong side of the bed. One thing can set him off and pretty much ruin the rest of the day. From what I read that is common in Autistic children. With Caleb being a high functioning (Pervasive Development Disorder)child he is very smart, very determined and very stubborn (like his mom).
It's those things that I have a hard time dealing with some times. As a parent I don't want to give in to everything with him. Yet when I talk with the Autism Specialist I am reminded that I cannot change Caleb and that I have to be the one to change how I deal with him.
Everyday when I wake up I know that I have to do the best I possibly can. There are days when Caleb is dragging his feet to get out the door that I do get irritated with him. It puts me behind and him getting to school just before the bell. We're only four minutes away but still I would like for him to be on time and settled in.
Those days he is dragging his feet are either because he didn't get his clothes laid out the night before because we came in late or he is trying to get his toys together. If I don't allow him to do the things he wants at his pace his shuts down.
Right now I am creating a schedule just for Caleb to go by. I found an old dry erase board in the office I share with my boyfriend. With the papers the specialist gave me on creating a schedule I have made one to fit Caleb. I plan on taking the board home within the next couple of days and sit down with Caleb explaining to him this is his schedule. Then I have to think of some incentives. I know he loves playing the Wii, getting new legos and new/used movies. I am really hoping this will help things improve between he and I.
It's been about a month now since Caleb was diagnosed as being on the Autism spectrum with PDD. I've been mostly working on learning more about PDD and reading the information given to me by his therapist and Autism Specialist at TEAM. As much as I wish things would improve over night since we've been through so much I am happy that things are falling into place and that things are gradually getting better.
It's those things that I have a hard time dealing with some times. As a parent I don't want to give in to everything with him. Yet when I talk with the Autism Specialist I am reminded that I cannot change Caleb and that I have to be the one to change how I deal with him.
Everyday when I wake up I know that I have to do the best I possibly can. There are days when Caleb is dragging his feet to get out the door that I do get irritated with him. It puts me behind and him getting to school just before the bell. We're only four minutes away but still I would like for him to be on time and settled in.
Those days he is dragging his feet are either because he didn't get his clothes laid out the night before because we came in late or he is trying to get his toys together. If I don't allow him to do the things he wants at his pace his shuts down.
Right now I am creating a schedule just for Caleb to go by. I found an old dry erase board in the office I share with my boyfriend. With the papers the specialist gave me on creating a schedule I have made one to fit Caleb. I plan on taking the board home within the next couple of days and sit down with Caleb explaining to him this is his schedule. Then I have to think of some incentives. I know he loves playing the Wii, getting new legos and new/used movies. I am really hoping this will help things improve between he and I.
It's been about a month now since Caleb was diagnosed as being on the Autism spectrum with PDD. I've been mostly working on learning more about PDD and reading the information given to me by his therapist and Autism Specialist at TEAM. As much as I wish things would improve over night since we've been through so much I am happy that things are falling into place and that things are gradually getting better.
Tuesday, March 1, 2011
The Diagnosis of Autism
Caleb went to his first TEAM Centers appointment in October. We both met with the intake specialist, a student intern who explained the services TEAM offered. She went over the process of getting Caleb tested and that it would be stretched out in appointments through January 2011 when the doctor would meet with me and hopefully give a diagnosis. Each time evaluations were completed the answers were quite interesting.
Across the board the tests performed indicated Caleb was a little over a year behind for his age group. His language was lagging behind causing great difficulty in communicating with others. This is true because this is the one thing that sets him off when he becomes frustrated that people don't understand him.
The physical therapist was the one who noticed Caleb's balance was off. Yet he can ride a bicycle with no training wheels. His posture is also off and he couldn't catch a tennis ball. Interesting enough I also learned that Caleb's eyes were not working together. It was recommended we see a developmental optometrist and an orthotist.
What all the specialists noticed is that Caleb tends to chew on the cuffs of his sleeves and also around the collar. Pretty much all of his shirts are permanently stained in this area. It was the doctor and Physical Therapist who noticed something was going on with Caleb.
At the end of all the evaluations the doctor was stumped as to what is going on with Caleb. While he did show many signs of ADHD some things were not adding up. So, she decided that Caleb needed to see one of the specialists with TEAM whose main focus is Autism. It wasn't what I expected though I was glad to keep going hoping an answer would be given soon.
Two weeks later Caleb and I once again traveled to Chattanooga to meet with Alyce, the specialist. After reviewing all of his evaluations, talking with me and observing Caleb, she was confident he has Pervasive Development Disorder or PDD. Caleb is considered a high functioning Autistic child at the border on the Autism Spectrum. For once in my life I was relieved I finally had an answer instead of feeling lost. Three appointments in February 2011 Alyce would observe Caleb and help me to understand more about PDD and how to work with Caleb.
One thing I learned is that children like Caleb cannot be changed and unfortunately, so many people try to change children. Caleb only sees gray in his own little world. So for now it is up to me to change my attitude, create a stable schedule for him at home to help make things better. I am happy to be on track now with getting Caleb the right help although I am making some decisions about some of the care his receiving that he is not benefiting from. In February 2011 Caleb finally seen the developmental optometrist in Cookeville and he does have vision issues that were not picked up by his vision screenings at school and at the health department. It has been almost a week now that we picked his glasses up and Caleb is happy to have them.
In the mean time Caleb will be going every other week to see Alyce. He sees an Intervention Specialist at his school once a week which is one of his favorites. He has a Case Manager from the mental health center he goes to. And just recently he seen a Child Psychiatrist whom he will see every two months. He is supposed to be starting physical and occupational therapy at his school very soon. According to the doctor at TEAM, once things get going with therapy his behavior should start to get better.
While everything is going into place I am hoping that his behavior will improve soon. Even though things are moving forward it still gets disappointing when he brings home his "Kid Mail" from school everyday and he has those blue and orange card days.
Across the board the tests performed indicated Caleb was a little over a year behind for his age group. His language was lagging behind causing great difficulty in communicating with others. This is true because this is the one thing that sets him off when he becomes frustrated that people don't understand him.
The physical therapist was the one who noticed Caleb's balance was off. Yet he can ride a bicycle with no training wheels. His posture is also off and he couldn't catch a tennis ball. Interesting enough I also learned that Caleb's eyes were not working together. It was recommended we see a developmental optometrist and an orthotist.
What all the specialists noticed is that Caleb tends to chew on the cuffs of his sleeves and also around the collar. Pretty much all of his shirts are permanently stained in this area. It was the doctor and Physical Therapist who noticed something was going on with Caleb.
At the end of all the evaluations the doctor was stumped as to what is going on with Caleb. While he did show many signs of ADHD some things were not adding up. So, she decided that Caleb needed to see one of the specialists with TEAM whose main focus is Autism. It wasn't what I expected though I was glad to keep going hoping an answer would be given soon.
Two weeks later Caleb and I once again traveled to Chattanooga to meet with Alyce, the specialist. After reviewing all of his evaluations, talking with me and observing Caleb, she was confident he has Pervasive Development Disorder or PDD. Caleb is considered a high functioning Autistic child at the border on the Autism Spectrum. For once in my life I was relieved I finally had an answer instead of feeling lost. Three appointments in February 2011 Alyce would observe Caleb and help me to understand more about PDD and how to work with Caleb.
One thing I learned is that children like Caleb cannot be changed and unfortunately, so many people try to change children. Caleb only sees gray in his own little world. So for now it is up to me to change my attitude, create a stable schedule for him at home to help make things better. I am happy to be on track now with getting Caleb the right help although I am making some decisions about some of the care his receiving that he is not benefiting from. In February 2011 Caleb finally seen the developmental optometrist in Cookeville and he does have vision issues that were not picked up by his vision screenings at school and at the health department. It has been almost a week now that we picked his glasses up and Caleb is happy to have them.
In the mean time Caleb will be going every other week to see Alyce. He sees an Intervention Specialist at his school once a week which is one of his favorites. He has a Case Manager from the mental health center he goes to. And just recently he seen a Child Psychiatrist whom he will see every two months. He is supposed to be starting physical and occupational therapy at his school very soon. According to the doctor at TEAM, once things get going with therapy his behavior should start to get better.
While everything is going into place I am hoping that his behavior will improve soon. Even though things are moving forward it still gets disappointing when he brings home his "Kid Mail" from school everyday and he has those blue and orange card days.
Saturday, February 26, 2011
Before the Autism Diagnosis (Part 2)
The summer after Caleb's kindergarten year we had a lot happen. My job was eliminated and the child support hadn't come through yet from my ex husband so we had to move. That meant the school he had been going to that he had grown to love would not be the one he would be attending for first grade.
I decided I would try to get him into the same school his older sister was attending in the county. It was the one she had been going to since my ex husband registered her there three years before.
But that in itself became a challenge. Even though the kids were going to their dads every other week and he was in the school zone, the school didn't want the two of them to attend there. It really got me riled up because I personally knew a friend as well as a family member who lived out of zone and their kids were attending that school. Those people were married not divorced like me. The kids going to their dads every other week was an agreement my ex husband and I made when he "couldn't" pay child support. The principal was adamant that my kids be transferred to the school where my mom and step dad were zoned. She had already taken the steps to notify the principal there that my kids were coming. I about lost it.
Then the SRO came in and treated me as if I were being deceiving. Supposedly he had been making trips over to where my ex husband resides and claimed my kids didn't live there. And then he made the statement that I didn't return his call. I never received a phone call from him or I would have returned it. I even checked my phone and I had a record printed and never found a number for him or the school. It was then I realized they for some reason wanted both my kids out of that school. I had no idea why they wanted my daughter out of there because she was an honors student, perfect attendance and always, always, always well behaved. She had been a basketball player there too and I had been a parent volunteer. I had even asked the principal if my daughter could stay and I would send Caleb somewhere else and was denied. As a final plea I asked her what could be done to keep the kids there. It was supposed to be the best school in the county and I wanted my kids to get the best education possible. I was told that my ex husband would have to have primary custody AND the kids be living there most of the time. "Most" of the time was not explained to me or my ex husband even when we asked. By this time my ex husband and I agreed we wanted our daughter to finish school there as she was in the fifth grade in her final year there.
In a long shot we went to the courthouse to talk with a judge or someone who would explain to us how to go about giving my ex husband primary custody. That also meant the child support would stop although he would still owe the arrears. I didn't care at that point. I just wanted my kids to be in a stable environment not jumping from one school to the next. I wanted my kids to have what I didn't have. Stability.
We had to wait a little while but got in to see the mediator which according to him, was a miracle. He praised us for working together focusing on the kids. Funny part was, both my ex husband and I wanted to so badly take the papers and rub them in the principals face. We knew she was so determined to get our kids, probably mainly Caleb out of the school. Within an hour we had exactly what we came there for. The papers showing that my ex husband now had primary custody of the kids.
We were excited to go back to the school and actually met up with the principal and the SRO who had the strangest look on their faces when we showed up with papers. Partly it looked as if they were disappointed. But the SRO made it clear he was going to monitor the situation. My ex husband figured the principal wouldn't back down and would be on our backs like a monkey.
To summarize the entire first grade year for Caleb in one word: Hellacious.
I lost count how many times I got called or received notification that he was suspended from school. In fact, he missed out on the class picture by an hour because the principal refused to let him stay even though I would be there.
Within the first six weeks of school Caleb was suspended for the year off the bus to his dads. I got the kids back into the Boys & Girls Club and they also picked the kids up after school. That was a rocky situation. Sometimes he got in trouble on the bus and other times he got suspended. I got the hunch the driver didn't like Caleb. He didn't like her either and I didn't blame him. It also meant there were countless times I had to pick Caleb up from school.
The first IEP meeting I felt we were getting somewhere. I kind of changed my attitude (some) towards the principal when she took up for Caleb and in body language reminded the teacher not to jump to conclusions and diagnose him with ADHD. His teacher was adamant he should be tested for it. I tried avoiding the subject. A behavior specialist observed him for a week in the classroom later on. She determined Caleb had something else other than ADHD. At a meeting with her she gave me information on Sensory Integration Disorder. I did some research and so many things fit Caleb.
But life got in the way and I didn't bother following through which in turn made the specialist mad and of course everyone else at the school. I didn't want to hear that my child "could" have ADHD because I wasn't buying it.
Caleb for one, is smart. Yet he is so stubborn. If you are having a bad day I promise he will pick up on it and rebel. He has sensory overload when people get in his face, touch him or even cough or sneeze on him. It sets him off and that gets him in a world of trouble.
I did play an active part in Caleb's education though. I went to the meetings, went to parties, ate at school with him and I chaperoned on a few of the field trips. All that seemed to not matter to the school staff. They mostly acted as if Caleb was a nuisance.
The last and final IEP meeting of the year nearly set me off. The principal couldn't make it so the recently replaced assistant principal showed up to the meeting all gung ho. I was blatantly told that IF my son did not improve he was going to be sent to the alternative school and would be a juvenile delinquent.
I could not believe what this woman was saying to me. I mean my son who was six years old and in first grade was already being labeled. Seriously?
I had a lot of positive things going on at that time that I happily let them know that more than likely Caleb wouldn't be back next year anyways. I had been accepted to Tennessee Tech and was waiting on an apartment to come open for us. And they happily made an extra copy of the IEP papers and other stuff for when we did move.
Moving was the best thing for us. Before school began we met with the assistant Special Education director for Putnam County. When she looked at the extra copy the school gave me three months prior, it upset her. Apparently the school had done nothing for Caleb. Testing had not been done since he was in kindergarten. At that point I felt that his entire first grade year was a waste and precious time had been lost.
I decided I would try to get him into the same school his older sister was attending in the county. It was the one she had been going to since my ex husband registered her there three years before.
But that in itself became a challenge. Even though the kids were going to their dads every other week and he was in the school zone, the school didn't want the two of them to attend there. It really got me riled up because I personally knew a friend as well as a family member who lived out of zone and their kids were attending that school. Those people were married not divorced like me. The kids going to their dads every other week was an agreement my ex husband and I made when he "couldn't" pay child support. The principal was adamant that my kids be transferred to the school where my mom and step dad were zoned. She had already taken the steps to notify the principal there that my kids were coming. I about lost it.
Then the SRO came in and treated me as if I were being deceiving. Supposedly he had been making trips over to where my ex husband resides and claimed my kids didn't live there. And then he made the statement that I didn't return his call. I never received a phone call from him or I would have returned it. I even checked my phone and I had a record printed and never found a number for him or the school. It was then I realized they for some reason wanted both my kids out of that school. I had no idea why they wanted my daughter out of there because she was an honors student, perfect attendance and always, always, always well behaved. She had been a basketball player there too and I had been a parent volunteer. I had even asked the principal if my daughter could stay and I would send Caleb somewhere else and was denied. As a final plea I asked her what could be done to keep the kids there. It was supposed to be the best school in the county and I wanted my kids to get the best education possible. I was told that my ex husband would have to have primary custody AND the kids be living there most of the time. "Most" of the time was not explained to me or my ex husband even when we asked. By this time my ex husband and I agreed we wanted our daughter to finish school there as she was in the fifth grade in her final year there.
In a long shot we went to the courthouse to talk with a judge or someone who would explain to us how to go about giving my ex husband primary custody. That also meant the child support would stop although he would still owe the arrears. I didn't care at that point. I just wanted my kids to be in a stable environment not jumping from one school to the next. I wanted my kids to have what I didn't have. Stability.
We had to wait a little while but got in to see the mediator which according to him, was a miracle. He praised us for working together focusing on the kids. Funny part was, both my ex husband and I wanted to so badly take the papers and rub them in the principals face. We knew she was so determined to get our kids, probably mainly Caleb out of the school. Within an hour we had exactly what we came there for. The papers showing that my ex husband now had primary custody of the kids.
We were excited to go back to the school and actually met up with the principal and the SRO who had the strangest look on their faces when we showed up with papers. Partly it looked as if they were disappointed. But the SRO made it clear he was going to monitor the situation. My ex husband figured the principal wouldn't back down and would be on our backs like a monkey.
To summarize the entire first grade year for Caleb in one word: Hellacious.
I lost count how many times I got called or received notification that he was suspended from school. In fact, he missed out on the class picture by an hour because the principal refused to let him stay even though I would be there.
Within the first six weeks of school Caleb was suspended for the year off the bus to his dads. I got the kids back into the Boys & Girls Club and they also picked the kids up after school. That was a rocky situation. Sometimes he got in trouble on the bus and other times he got suspended. I got the hunch the driver didn't like Caleb. He didn't like her either and I didn't blame him. It also meant there were countless times I had to pick Caleb up from school.
The first IEP meeting I felt we were getting somewhere. I kind of changed my attitude (some) towards the principal when she took up for Caleb and in body language reminded the teacher not to jump to conclusions and diagnose him with ADHD. His teacher was adamant he should be tested for it. I tried avoiding the subject. A behavior specialist observed him for a week in the classroom later on. She determined Caleb had something else other than ADHD. At a meeting with her she gave me information on Sensory Integration Disorder. I did some research and so many things fit Caleb.
But life got in the way and I didn't bother following through which in turn made the specialist mad and of course everyone else at the school. I didn't want to hear that my child "could" have ADHD because I wasn't buying it.
Caleb for one, is smart. Yet he is so stubborn. If you are having a bad day I promise he will pick up on it and rebel. He has sensory overload when people get in his face, touch him or even cough or sneeze on him. It sets him off and that gets him in a world of trouble.
I did play an active part in Caleb's education though. I went to the meetings, went to parties, ate at school with him and I chaperoned on a few of the field trips. All that seemed to not matter to the school staff. They mostly acted as if Caleb was a nuisance.
The last and final IEP meeting of the year nearly set me off. The principal couldn't make it so the recently replaced assistant principal showed up to the meeting all gung ho. I was blatantly told that IF my son did not improve he was going to be sent to the alternative school and would be a juvenile delinquent.
I could not believe what this woman was saying to me. I mean my son who was six years old and in first grade was already being labeled. Seriously?
I had a lot of positive things going on at that time that I happily let them know that more than likely Caleb wouldn't be back next year anyways. I had been accepted to Tennessee Tech and was waiting on an apartment to come open for us. And they happily made an extra copy of the IEP papers and other stuff for when we did move.
Moving was the best thing for us. Before school began we met with the assistant Special Education director for Putnam County. When she looked at the extra copy the school gave me three months prior, it upset her. Apparently the school had done nothing for Caleb. Testing had not been done since he was in kindergarten. At that point I felt that his entire first grade year was a waste and precious time had been lost.
Thursday, February 24, 2011
Potty Training
Our story begins in 2004 when Caleb was two years old. He was like any typical child, or so I thought. He showed interest in the potty so I bought him one. He successfully peed in it a few times and then quit. So I put it away thinking he just was not ready. After all, he had just turned two.
As he got older I tried potty training again. This time he completely balked at it so I threw in the towel and waited a little while longer. I had attributed most of his balking to his dad and I separating, his older sister going to live with their dad, moving to a new place, and him having to spend more time at a babysitters because of my job.
Then I lost my job, discovered I was pregnant and we got a new babysitter. Even she had a time getting him to go potty. I struggled for the next 22 months, just two months shy of his 4th birthday before I finally got him potty trained. It felt like a ton of bricks had come off my back.
For over a year I had friends and family hounding me about getting my son potty trained. Even his dad had been critical accusing me of neglecting our son. It was humiliating enough to have your neighbors children come and tell you he's had an accident or to go to church and everyone else's children are potty trained in his Sunday School class. You had to cut short times to do errands or grocery shopping to keep from being embarrassed.
A close friend of mine who has an early childhood background could tell I was at my wits end. She shared with me the book she co-wrote about potty training. After potty training hundreds of two and three year olds including her own two boys in a twenty year span there were Three things she emphasized to me, that 1) I have to be consistent with him; put him on a schedule. 2) I let him take a favorite toy, book, blanket or snack if I want him to cooperate and thus, relax. 3)Whatever I am feeling he WILL pick up on it.
From what my son's Autism specialist shared with me recently, a schedule is imperative at home and at school. My son let me know he likes this idea. Also, he is a very intuitive child. Anyone who is angry, agitated, upset, sad, or happy he will pick up on it. I can bet that anytime I am having a not-so-good day he picks up on it and reacts in a negative way. This little tid bit has helped me change my attitude, my way of thinking and what I say. Basically, it has helped me work on creating a more positive life for myself and my children.
As he got older I tried potty training again. This time he completely balked at it so I threw in the towel and waited a little while longer. I had attributed most of his balking to his dad and I separating, his older sister going to live with their dad, moving to a new place, and him having to spend more time at a babysitters because of my job.
Then I lost my job, discovered I was pregnant and we got a new babysitter. Even she had a time getting him to go potty. I struggled for the next 22 months, just two months shy of his 4th birthday before I finally got him potty trained. It felt like a ton of bricks had come off my back.
For over a year I had friends and family hounding me about getting my son potty trained. Even his dad had been critical accusing me of neglecting our son. It was humiliating enough to have your neighbors children come and tell you he's had an accident or to go to church and everyone else's children are potty trained in his Sunday School class. You had to cut short times to do errands or grocery shopping to keep from being embarrassed.
A close friend of mine who has an early childhood background could tell I was at my wits end. She shared with me the book she co-wrote about potty training. After potty training hundreds of two and three year olds including her own two boys in a twenty year span there were Three things she emphasized to me, that 1) I have to be consistent with him; put him on a schedule. 2) I let him take a favorite toy, book, blanket or snack if I want him to cooperate and thus, relax. 3)Whatever I am feeling he WILL pick up on it.
From what my son's Autism specialist shared with me recently, a schedule is imperative at home and at school. My son let me know he likes this idea. Also, he is a very intuitive child. Anyone who is angry, agitated, upset, sad, or happy he will pick up on it. I can bet that anytime I am having a not-so-good day he picks up on it and reacts in a negative way. This little tid bit has helped me change my attitude, my way of thinking and what I say. Basically, it has helped me work on creating a more positive life for myself and my children.
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