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.
Monday, February 28, 2011
Caleb's Life Leading Up to His Autism Diagnosis
When Caleb entered the second grade he was very timid about his new surroundings. His regular classroom teacher and special education teacher could sense he was holding back. For one, he didn't trust anyone.
His first grade year was a hellacious time in his life. There were days he would come home and say things that would make my jaw drop. He need to learn to control himself, he was just being bad, he was being defiant...
Caleb's self esteem had taken a major nose dive. It would take the entire year for it bounce back and him start to feel good about himself. His teachers made a huge effort to work with him even when he was at his highest point with stubbornness.
The most awesome thing was that the Putnam county school system had a few special buses specifically for kids like Caleb with behavioral problems. They had an assistant with the driver and they came directly to our apartment.
Only one time during the year did Caleb get suspended from school and I understood why the principal made the decision. Caleb never got suspended off the bus either. He did have his issues throughout the year but it was mostly him being stubborn in his ways refusing to do his classwork or homework.
It was his suspension for one day just before Thanksgiving holidays that became the final straw. We were in a place where we didn't know hardly anyone. All of our friends and family were 100 miles away and I was a full time college student. At the last minute my boyfriend drove three hours just to sit with my son for much of the day while I went to my three classes and could take a test and a quiz I would have otherwise not been able to make up. After my classes were done for the day my boyfriend sat down with me and flat out said this could not happen anymore. I was almost in tears acknowledging and accepting that something had to be done.
So after the holidays I made the phone call to a local pediatrician who specialized in ADD/ADHD diagnoses. The wait ended up being six weeks long and as we got closer to the date I got more anxious.
All I did at the pediatricians office was fill out a survey that had 100 questions and one for his teacher to fill out and return. In the meantime the pediatrician quickly went over it, diagnosed Caleb as having ADHD and then prescribed him Vyvanse. I had discussed with the pediatrician there were some other things going on that I felt did not fit ADHD. His sensory issues, his days were mostly good ones, but those things I felt had gone on deaf ears. In some ways it was a sense of relief, but I also felt that this was not right. I never believed Caleb had ADHD.
Caleb could have some really awesome days, some okay days and some rough days. It was like a roller coaster all of the time.
Before Vyvanse Caleb was a child who would bug me, bug my friends if he could take a bath. Some days he would just sit and play in the tub three, four and five times. He had a time going to bed but not as much as after using Vyvanse.
His behavior did improve for awhile. Three months later though, it was if Vyvanse had quit working. Caleb could stay up all night unless I pretty much sat by him with all the lights off. Getting him to take a bath or shower was a nightmare. It got so bad I would have to physically strip him down, pick him up while kicking and screaming and put him in the tub. I was at wits end once again.
I told the pediatrician about these issues and he asked me what should be done? I felt lost at that point. The Vyvanse was actually increased and I had a little hope it would smooth things out. Not so much. Caleb actually started to show signs of depression as well and even after mentioning these things the pediatricians office decreased his medications once again. It was about that time we were getting ready to move back home after my graduation from Tennessee Tech University. We got a final prescription and then it became my decision if I wanted Caleb to continue taking Vyvanse in the summer.
I continued giving Caleb the Vyvanse even after we moved. Once we got settled in I took him to his former pediatrician. She flat out told me Vyvanse did not work and that I should take him to TEAM Centers in Chattanooga and a mental health center in our community. I did drag my feet about it mostly because it was the summer time. Before school began I got him to the mental health center as I found out it would be three months before Caleb would go to TEAM. It would be at TEAM we would finally get some answers.
His first grade year was a hellacious time in his life. There were days he would come home and say things that would make my jaw drop. He need to learn to control himself, he was just being bad, he was being defiant...
Caleb's self esteem had taken a major nose dive. It would take the entire year for it bounce back and him start to feel good about himself. His teachers made a huge effort to work with him even when he was at his highest point with stubbornness.
The most awesome thing was that the Putnam county school system had a few special buses specifically for kids like Caleb with behavioral problems. They had an assistant with the driver and they came directly to our apartment.
Only one time during the year did Caleb get suspended from school and I understood why the principal made the decision. Caleb never got suspended off the bus either. He did have his issues throughout the year but it was mostly him being stubborn in his ways refusing to do his classwork or homework.
It was his suspension for one day just before Thanksgiving holidays that became the final straw. We were in a place where we didn't know hardly anyone. All of our friends and family were 100 miles away and I was a full time college student. At the last minute my boyfriend drove three hours just to sit with my son for much of the day while I went to my three classes and could take a test and a quiz I would have otherwise not been able to make up. After my classes were done for the day my boyfriend sat down with me and flat out said this could not happen anymore. I was almost in tears acknowledging and accepting that something had to be done.
So after the holidays I made the phone call to a local pediatrician who specialized in ADD/ADHD diagnoses. The wait ended up being six weeks long and as we got closer to the date I got more anxious.
All I did at the pediatricians office was fill out a survey that had 100 questions and one for his teacher to fill out and return. In the meantime the pediatrician quickly went over it, diagnosed Caleb as having ADHD and then prescribed him Vyvanse. I had discussed with the pediatrician there were some other things going on that I felt did not fit ADHD. His sensory issues, his days were mostly good ones, but those things I felt had gone on deaf ears. In some ways it was a sense of relief, but I also felt that this was not right. I never believed Caleb had ADHD.
Caleb could have some really awesome days, some okay days and some rough days. It was like a roller coaster all of the time.
Before Vyvanse Caleb was a child who would bug me, bug my friends if he could take a bath. Some days he would just sit and play in the tub three, four and five times. He had a time going to bed but not as much as after using Vyvanse.
His behavior did improve for awhile. Three months later though, it was if Vyvanse had quit working. Caleb could stay up all night unless I pretty much sat by him with all the lights off. Getting him to take a bath or shower was a nightmare. It got so bad I would have to physically strip him down, pick him up while kicking and screaming and put him in the tub. I was at wits end once again.
I told the pediatrician about these issues and he asked me what should be done? I felt lost at that point. The Vyvanse was actually increased and I had a little hope it would smooth things out. Not so much. Caleb actually started to show signs of depression as well and even after mentioning these things the pediatricians office decreased his medications once again. It was about that time we were getting ready to move back home after my graduation from Tennessee Tech University. We got a final prescription and then it became my decision if I wanted Caleb to continue taking Vyvanse in the summer.
I continued giving Caleb the Vyvanse even after we moved. Once we got settled in I took him to his former pediatrician. She flat out told me Vyvanse did not work and that I should take him to TEAM Centers in Chattanooga and a mental health center in our community. I did drag my feet about it mostly because it was the summer time. Before school began I got him to the mental health center as I found out it would be three months before Caleb would go to TEAM. It would be at TEAM we would finally get some answers.
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.
Before the Autism Diagnosis
It seems like it has taken a long time to get to a point where there were finally answers. His diagnosis went from ADHD to PDD on the Autism Spectrum in a matter of one year. For so long it has been a challenging journey as a mom, particularly with Caleb. Over and over again I get asked when I started to notice there were issues with him. The most painful questions I am asked regard his developmental milestones.
He and I went through so much from the time he was conceived until now. It's like I have shut down that part of my life and his life because I really cannot remember when he first spoke, first sat up, rolled over or smiled. The only thing I do remember is when he started walking, which was about the same time his older sister did.
Caleb was almost four years old when I finally got him potty trained. He struggled with words but I just attributed that to a common issue with some kids. I am grateful that I got him into Head Start Pre-K though. They were the ones who caught his developmental delays and began working with him.
At four years old he had very poor motor skills. He couldn't hold a crayon or a jumbo pencil. His speech and language skills were like that of a toddler.Caleb also hated transitions during the day too. The most challenging part of the day was lunch. He ended up being separated from his class by having to sit at the end of the table, alone. Worse yet, he was showing aggression towards his classmates. So much so that his first set of teachers who were new to the classroom couldn't handle him. Then it came to the point that the Head Start Director and I agreed he needed to be switched to the other set of teachers who had over 30 years experience, combined. Before the end of the school year an IEP was created and I met with the Behavioral Specialist who insisted he get tested for ADHD. I was also encouraged to visit with a local non profit behavioral program. At that point I was discouraged, disappointed and I guess in some ways, angry. Caleb and I had been through so much and it was like a slap in the face for someone to just blatantly come out and say your child probably has ADHD.
I admit that I didn't bother checking into getting him tested. Well, actually I spoke with a friend who was a case manager for a local mental health center. He was in charge of teen boys with various behavior and mental problems so I trusted he knew what he was talking about when he said my son wouldn't be tested until he got to the first grade. So I let that part go and I did check into the behavioral program. While they were somewhat encouraging, I decided it wasn't for us. First off, they also wanted me to include the younger brother (who was ONE) in an off-to-the-side prevention program. Secondly, I couldn't bring my older daughter so I had to find a babysitter which was a challenge at that time.
Then came kindergarten. Caleb ended up with two different teachers at the beginning of the year. But it didn't have to do with his behavior yet I was concerned about the transition. Because the school was getting ready to move into the new building they had to add another kindergarten teacher so Caleb was transferred to the new teachers class. And I was very glad. I liked the first teacher when I first met her until a very minor incident one day. I received a phone call from the assistant that another classmate had stuck a bead in Caleb's ear and it wasn't coming out. She wanted me to come get him and take him to his pediatrician. It wasn't five minutes after I checked him out of school that the bead came out of his ear quite easily. At the encouragement and recommendation of my friends and neighbors I took him back to school. Just as I was checking him back in his teacher and her assistant came walking by the office. When they both seen us they made it clear they were not happy I brought him back. Both rolled their eyes and sighed in discouragement as if they dreaded seeing him back. Right after that incident is when I found out he was getting a new teacher and I had high hopes this one would be better.
I finally met his new teacher at the grand opening ceremony. She was so bubbly, excited and very passionate. In fact every time I came in for a meeting she thanked and praised me for being a caring parent. She explained that some of the parents who were married never bothered to show any interest in their children's education.
Caleb's kindergarten teacher and assistant always showed effort and did all they could to include him in the class activities. They treated every child like they have potential. He had his up days and down days but Caleb progressed in tiny steps. He Never got suspended from school the entire year. He did fine on the school bus too. His behavior hardly warranted a trip to the principal just that his desk was most of the time next to his teachers. At the end of the year IEP the principal even discussed Caleb's gradual progress and talked about the potential she seen in him even for the next year. But little did I know how much would change in a year.
He and I went through so much from the time he was conceived until now. It's like I have shut down that part of my life and his life because I really cannot remember when he first spoke, first sat up, rolled over or smiled. The only thing I do remember is when he started walking, which was about the same time his older sister did.
Caleb was almost four years old when I finally got him potty trained. He struggled with words but I just attributed that to a common issue with some kids. I am grateful that I got him into Head Start Pre-K though. They were the ones who caught his developmental delays and began working with him.
At four years old he had very poor motor skills. He couldn't hold a crayon or a jumbo pencil. His speech and language skills were like that of a toddler.Caleb also hated transitions during the day too. The most challenging part of the day was lunch. He ended up being separated from his class by having to sit at the end of the table, alone. Worse yet, he was showing aggression towards his classmates. So much so that his first set of teachers who were new to the classroom couldn't handle him. Then it came to the point that the Head Start Director and I agreed he needed to be switched to the other set of teachers who had over 30 years experience, combined. Before the end of the school year an IEP was created and I met with the Behavioral Specialist who insisted he get tested for ADHD. I was also encouraged to visit with a local non profit behavioral program. At that point I was discouraged, disappointed and I guess in some ways, angry. Caleb and I had been through so much and it was like a slap in the face for someone to just blatantly come out and say your child probably has ADHD.
I admit that I didn't bother checking into getting him tested. Well, actually I spoke with a friend who was a case manager for a local mental health center. He was in charge of teen boys with various behavior and mental problems so I trusted he knew what he was talking about when he said my son wouldn't be tested until he got to the first grade. So I let that part go and I did check into the behavioral program. While they were somewhat encouraging, I decided it wasn't for us. First off, they also wanted me to include the younger brother (who was ONE) in an off-to-the-side prevention program. Secondly, I couldn't bring my older daughter so I had to find a babysitter which was a challenge at that time.
Then came kindergarten. Caleb ended up with two different teachers at the beginning of the year. But it didn't have to do with his behavior yet I was concerned about the transition. Because the school was getting ready to move into the new building they had to add another kindergarten teacher so Caleb was transferred to the new teachers class. And I was very glad. I liked the first teacher when I first met her until a very minor incident one day. I received a phone call from the assistant that another classmate had stuck a bead in Caleb's ear and it wasn't coming out. She wanted me to come get him and take him to his pediatrician. It wasn't five minutes after I checked him out of school that the bead came out of his ear quite easily. At the encouragement and recommendation of my friends and neighbors I took him back to school. Just as I was checking him back in his teacher and her assistant came walking by the office. When they both seen us they made it clear they were not happy I brought him back. Both rolled their eyes and sighed in discouragement as if they dreaded seeing him back. Right after that incident is when I found out he was getting a new teacher and I had high hopes this one would be better.
I finally met his new teacher at the grand opening ceremony. She was so bubbly, excited and very passionate. In fact every time I came in for a meeting she thanked and praised me for being a caring parent. She explained that some of the parents who were married never bothered to show any interest in their children's education.
Caleb's kindergarten teacher and assistant always showed effort and did all they could to include him in the class activities. They treated every child like they have potential. He had his up days and down days but Caleb progressed in tiny steps. He Never got suspended from school the entire year. He did fine on the school bus too. His behavior hardly warranted a trip to the principal just that his desk was most of the time next to his teachers. At the end of the year IEP the principal even discussed Caleb's gradual progress and talked about the potential she seen in him even for the next year. But little did I know how much would change in a year.
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