My daily journey is filled with lots of unknowns with Caleb. I have no idea how he'll be in the mornings whenever I wake him up for school. Some days go well while others do not. If one thing is off so is the rest of his day, most of the time.
It's been recommended I create a schedule for him. He needs consistency which I agree with. The main issue is him cooperating and willing to work with it. Caleb is a good kid. He can be so loving, kind, and caring. But there are days he is aggressive with others and that gets him in trouble.
As I share with my family and friends the diagnosis of Autism, they are surprised. I too am surprised that most of the people I talk to assume that Autism means a child doesn't talk, rocks back and forth and plays alone. I have had to explain to people there is a spectrum and that some children show very little "obvious" symptoms while some don't talk or play with others. In fact, I have had to family members mention that Caleb looks "normal."
To me that is a good thing yet it is also a huge issue. He gets treated "normal" as if he is a typical child rebelling, being defiant. I believe some people at his school are defiant in believing he has PDD on the Autism spectrum.They still want to say he has ADHD despite the fact he has had testing and a final diagnosis. Caleb picks up on other peoples vibes so when people at his school are treating him as if he is just a typical child of course he will react in a negative way.
I just never know how his day will be because of this. Caleb could have a great day at home but a rough day at school. He can have good days with family and friends while other days are just plain rough.
It is hard enough to explain to my family he is not a typical child. He is a very special child that we all have to embrace. Caleb cannot be changed so we must work on ourselves. He is very smart just very stubborn. There are times it comes back on me.
People are rough with me because they believe that I am ignoring my sons issues. These are people, including family who have not taken the time out to get to know me and what I do on a daily basis. It is my hope that as I write this blog and focus on what I would like to do in the future to help with understanding Autism is that others will lighten up and be more kind to others who already have daily challenges.
Monday, March 21, 2011
Saturday, March 12, 2011
Everyday Is A Journey With Autism
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.
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.
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.
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