Everything else that has happened since Evelio started school.
By the end of Evelio's first year in the Little House Program, I did not notice the major improvement I was hoping for. I had heard stories from other parents about how once their kids got in school, they had overcome so much. I was extremely disappointed at finding he hadn't really retained any of what his teacher had taught him in class. I'm not bashing his teacher, I love her, I was just not happy with his progress.
With the summer passing, my hopes began to rise again. I had applied for Evelio to attend the local head start's 3 year old program. (Evelio would be shortly turning 4, but his birthday is 7 days after the 21st, so they still classified him as ineligible for regular public school head start). I was absolutely sure they could not turn him away because the application clearly stated that this facility considered primarily income first, and then special needs. Of course, he was accepted, and this made me extremely excited. Here's just what he needed! After all, now he would be getting head start services as well as the Little House instruction.
We had another IEP meeting. I expressed my concerns with the head start staff about Evelio's aggressive behavior. They assured me that I had nothing to worry about. "Oh just give him 2 weeks, then he'll be normal like everyone else." Normal like everyone else? I disregarded this again expressed my concerns. I was told, "Well, if you feel more comfortable, you are welcome to come and sit with Evelio while he is in class." This made me feel much better about the situation. After the first 2 days, I became very upset and began thinking it wasn't going to work out. First of all, they had 17 kids in his class with only 2 teachers and one volunteer (unless I was there). Second, everything they were teaching was way over Evelio's level, so I'm sure he felt completely lost, and they did not try to include things that would help him learn as well. Over the next 2 weeks or so, he was sent home at least 3 times for attacking or fit throwing. Then, they requested a meeting and proposed the idea of cutting down his day. I didn't want to at first, but then I thought that might work since Evelio is NOT a morning person. So we changed his IEP to state that he would not come to school until 10:30. Then a few more weeks passed, and more times than I could keep track of, he was sent home.
Then one day I got a call. A call requesting yet another meeting to ammend Evelio's IEP. I was absolutely furious. I researched some information about paraprofessionals for special needs kids. I took this information along with my parent aide advisor and her supervisor for support. We got to the meeting and the proposal was to dismiss Evelio from the head start classroom because he was not ready. My paraprofessional idea was shot down by the head start's "limited funding". To put a long story short, they already had the amendment typed out and sitting pretty just waiting for me to sign it. Great point to a meeting, huh?
Anyhow, he still attends the Little House Program. We have changed his medication around a few times. We tried Abilify. . .no success. Depakote. . .no success. Then we went right back to Risperdal and coupled it with a medication called Clonidine. It is working marvelously. Also we bought some Melatonin because he was waking up frequently during the night. Very satisfied with the meds at this time.
Now that all the background information has been covered. . .
Time for the real stuff. . .
Tuesday, January 31, 2012
On the Road: Evelio's Third Year
Right after Evelio turned 2 years old, we had a court date for paternity testing at the local child support office. Of course his father did not show up, but Evelio and I still had to go. The waiting area was tiny and there were at least 40 people in this area. I was afraid to put Evelio down because there were a lot of little babies. I held him in my lap and he became extremely agitated. He began a major meltdown. He bit my cheek, scratched my neck, pulled my hair out, and broke my glasses. Everyone in the room was staring at us. He also banged his face into the window busting both of his lips. There were several comments made by others in the room about my parenting skills and the way I was handling the situation. I asked the receptionist if she could possibly move us ahead of others because of my son's behavior. She refused. Evelio and I were the next to last people on the list. He had to endure 2 and a half hours of waiting in this room full of people staring at him. I started crying because I didn't know what to do. I didn't have anyone else with me, and Evelio was completely out of control. I took him outside the office even though it was freezing, I thought maybe he would calm down. He was still screaming and throwing himself onto the ground. A young man came outside and with a frustrated voice, asked me, "Can't you control your kid?"
That was the last thing I could take. I walked back into the office and told everyone, "Listen up! My son is Autistic. I have to keep him in my lap to keep him from attacking your kids. You all are talking about me and him as if we're aliens or something. As far as my parenting skills go, would you rather me let him run around so he can hurt your kids? I hope you all feel really good about all the crap you have said about us now." Not a soul would look me in the eyes, and no one apologized. That day was the day I decided to ask his doctor for some kind of behavior medicine.
I had been against medication before. I was scared that medicine would make him a zombie. But, I couldn't handle his behavior when it got that way. The doctor decided to try Risperdal. We started at a very low dose and gradually raised it over the next two weeks. It helped immensely (for a while at least). He had a seizure a few months later, and 4 seizures the month after the first one. Referral for neurologist. Also a referral for geneticist to check his chromosomes for abnormalities. . .
. . .a year full of appointments out of town.
The neurologist appointment was the first that year. The doctor scheduled an EEG, which yielded no abnormalities. He prescribed Evelio, Zonegram, for the seizures. He also scheduled a sedated MRI in April of that year. It was so difficult to see the doctors put that gas mask on him while he was fighting them. I cried the entire time I was waiting for the MRI to be finished. Results were that he had slightly delayed myelination in his brain. Neurologist said it really wasn't anything to worry about. I got a second opinion and that doctor said the same. (Whew! Relief).
Then came the appointments for the geneticist. They did blood work and urine samples. I had to leave the room while they took blood. They had to strap him down on the table. It was traumatizing for both of us. Results showed there were absolutely no abnormalities in his chromosomes. I was relieved, but, at the same time questions were raised as to why he is Autistic if there is nothing showing as abnormal!
The appointment in Oklahoma City was scheduled for June. They were extremely nice to us. Their observations and testing results were that he was Autistic (big surprise!), and also expressive/receptive language disorder, and clinical seizures.
When he turned 3, I had an IEP meeting with the school district to get him in a program called, "Little Plato House". This program would allow him to attend school Monday-Thursday from 1-3:15pm. I loved his teacher and the program. It seemed as though things were going to go well. Evelio was still having meltdowns, but I was learning how to deal with them a little better. I was so full of hope that he would make a ton of improvements seeing as he would be attending school. . .Satisfy it to say, I would be disappointed.
That was the last thing I could take. I walked back into the office and told everyone, "Listen up! My son is Autistic. I have to keep him in my lap to keep him from attacking your kids. You all are talking about me and him as if we're aliens or something. As far as my parenting skills go, would you rather me let him run around so he can hurt your kids? I hope you all feel really good about all the crap you have said about us now." Not a soul would look me in the eyes, and no one apologized. That day was the day I decided to ask his doctor for some kind of behavior medicine.
I had been against medication before. I was scared that medicine would make him a zombie. But, I couldn't handle his behavior when it got that way. The doctor decided to try Risperdal. We started at a very low dose and gradually raised it over the next two weeks. It helped immensely (for a while at least). He had a seizure a few months later, and 4 seizures the month after the first one. Referral for neurologist. Also a referral for geneticist to check his chromosomes for abnormalities. . .
. . .a year full of appointments out of town.
The neurologist appointment was the first that year. The doctor scheduled an EEG, which yielded no abnormalities. He prescribed Evelio, Zonegram, for the seizures. He also scheduled a sedated MRI in April of that year. It was so difficult to see the doctors put that gas mask on him while he was fighting them. I cried the entire time I was waiting for the MRI to be finished. Results were that he had slightly delayed myelination in his brain. Neurologist said it really wasn't anything to worry about. I got a second opinion and that doctor said the same. (Whew! Relief).
Then came the appointments for the geneticist. They did blood work and urine samples. I had to leave the room while they took blood. They had to strap him down on the table. It was traumatizing for both of us. Results showed there were absolutely no abnormalities in his chromosomes. I was relieved, but, at the same time questions were raised as to why he is Autistic if there is nothing showing as abnormal!
The appointment in Oklahoma City was scheduled for June. They were extremely nice to us. Their observations and testing results were that he was Autistic (big surprise!), and also expressive/receptive language disorder, and clinical seizures.
When he turned 3, I had an IEP meeting with the school district to get him in a program called, "Little Plato House". This program would allow him to attend school Monday-Thursday from 1-3:15pm. I loved his teacher and the program. It seemed as though things were going to go well. Evelio was still having meltdowns, but I was learning how to deal with them a little better. I was so full of hope that he would make a ton of improvements seeing as he would be attending school. . .Satisfy it to say, I would be disappointed.
Doctor Visits; Suspicions Confirmed: Evelio's Second Year
Evelio started walking well around 18 months. He still had strange behaviors, but like I said, I didn't see what was really wrong with them. He was a happy child in my eyes. I did notice that he was becoming easily agitated, but I came to associate this behavior with "terrible twos".
Evelio had been in and out of the doctor pretty much every month since he was about 5 months for ear infections. I was scared that he had lost his hearing ability.
Thus, the road to diagnosis started with an appointment with an ear, nose, and throat specialist. Evelio failed his first hearing screening that year. The doctor was not sure if it was because of his hearing or the fact that he didn't really want to participate. At that time, I was very worried that my child wasn't hearing well, and maybe that was why he had become aggressive. A few more hearing screenings came and went, all failed due to non-cooperation.
Then, one day, my mom told me that she had done some research and she thought that he may be Autistic. I didn't really know exactly what Autism was at that time, so I did my own research online. I found a checklist that made me suspect he did indeed have Autism. I decided to make an appointment with a different doctor and have them test him. The doctor he had before always came in the examination room and acted as though she had no idea who he was and like she didn't know him, which made me feel uncomfortable. A new clinic had just been built here in Duncan, and I decided to take him there.
The wait in the waiting room was agonizing. Evelio did not want to be still. He didn't want me to hold him. He didn't want to sit down. He squealed and screamed until the nurse called us back.
His doctor gave me a questionnaire that took a million years to fill out. While I filled this out, she observed Evelio, who was pretty agitated by this time. He thought we were leaving when the nurse called us, but to his disappointment, were led to a smaller room with a closed door. At that time, any sound of a door closing would set Evelio off into a meltdown. Anyhow, the appointment lasted almost 2 hours. At the end of it, his doctor took my hand and said, "He'll need to go for testing by (a facility in Oklahoma City) before you can apply for disability, but I can say I am 99% sure your son has Autism."
Silence.
She filled the silence with, "You're not alone. There is a long road ahead of you, but I will do everything in my power to help you. We're going to do this together." That same day she put in four referrals to various therapists and that facility in Oklahoma City.
So then, I was a single 18 year old with a 2 year old son with Autism. The long road I was starting to travel on suddenly looked 100 times worse.
Evelio had been in and out of the doctor pretty much every month since he was about 5 months for ear infections. I was scared that he had lost his hearing ability.
Thus, the road to diagnosis started with an appointment with an ear, nose, and throat specialist. Evelio failed his first hearing screening that year. The doctor was not sure if it was because of his hearing or the fact that he didn't really want to participate. At that time, I was very worried that my child wasn't hearing well, and maybe that was why he had become aggressive. A few more hearing screenings came and went, all failed due to non-cooperation.
Then, one day, my mom told me that she had done some research and she thought that he may be Autistic. I didn't really know exactly what Autism was at that time, so I did my own research online. I found a checklist that made me suspect he did indeed have Autism. I decided to make an appointment with a different doctor and have them test him. The doctor he had before always came in the examination room and acted as though she had no idea who he was and like she didn't know him, which made me feel uncomfortable. A new clinic had just been built here in Duncan, and I decided to take him there.
The wait in the waiting room was agonizing. Evelio did not want to be still. He didn't want me to hold him. He didn't want to sit down. He squealed and screamed until the nurse called us back.
His doctor gave me a questionnaire that took a million years to fill out. While I filled this out, she observed Evelio, who was pretty agitated by this time. He thought we were leaving when the nurse called us, but to his disappointment, were led to a smaller room with a closed door. At that time, any sound of a door closing would set Evelio off into a meltdown. Anyhow, the appointment lasted almost 2 hours. At the end of it, his doctor took my hand and said, "He'll need to go for testing by (a facility in Oklahoma City) before you can apply for disability, but I can say I am 99% sure your son has Autism."
Silence.
She filled the silence with, "You're not alone. There is a long road ahead of you, but I will do everything in my power to help you. We're going to do this together." That same day she put in four referrals to various therapists and that facility in Oklahoma City.
So then, I was a single 18 year old with a 2 year old son with Autism. The long road I was starting to travel on suddenly looked 100 times worse.
Monday, January 30, 2012
He Wants to Fly: Evelio's 1st Year
As a newborn, Evelio was such a good baby. By good baby, I mean the only time he ever cried was when he was hungry, wet, dirty etc. He never had fits for no reason. He never had colic, and he would wake up at night, eat, and go straight back to sleep. I was so relieved to find that he was not a cranky baby. My nephew was only 10 days younger than Evelio and he cried all the time.
For the first 6 months or so, Evelio seemed like any other 'normal' baby. He was usually happy and laughing. At around 7-8 months, I noticed that he didn't want me to feed him his baby food. He would only eat if I let him feed himself. I was surprised but thrilled at seeing him become more independent.
I started to feel like something might be wrong when he was 10 months old and still not crawling. Everytime this thought would cross my mind I would shake it off. We, (my mother, my nephew, my son, and I) were living in a 3 bedroom apartment that was all tile and I didn't let the kids have a lot of time on the floor. I was scared they would hurt themselves on the hard tile. I thought this was why my son wasn't crawling yet. My nephew being 10 days younger was crawling but I somehow did not realize it.
I also noticed that when I would put Evelio in his walker, he would raise his hands up in the air and shake his head back and forth making himself dizzy with his tongue out. I disregarded this as well. He just wanted to entertain himself. He didn't see alot of other kids so he made his own way to have fun.
Then one day, he was sitting on the floor with his legs folded underneath him so he was resting his bottom on the backs of his legs. He was shaking his head and laughing, and then he started flapping his arms really fast and my boyfriend's (at that time) dad said, "Look Evelio is trying to fly. Fly away, baby, fly away!"
I watched him for a minute laughing. Kids do the darndest things right? Well, I noticed that he flapped his hands alot, but still I saw nothing wrong with it. At that time I didn't know that flapping was a key characteristic of Autism. In fact, I didn't know much about Autism at all. I just figured, "Hey the kid wants to fly!"
Evelio started crawling finally right before he turned a year old. He still seemed pretty normal minus a few slightly weird behaviors previously mentioned. He said 'ma-ma' and made noises by then but no real words. But that's pretty much on track isn't it, for a 1 year old?
For the first 6 months or so, Evelio seemed like any other 'normal' baby. He was usually happy and laughing. At around 7-8 months, I noticed that he didn't want me to feed him his baby food. He would only eat if I let him feed himself. I was surprised but thrilled at seeing him become more independent.
I started to feel like something might be wrong when he was 10 months old and still not crawling. Everytime this thought would cross my mind I would shake it off. We, (my mother, my nephew, my son, and I) were living in a 3 bedroom apartment that was all tile and I didn't let the kids have a lot of time on the floor. I was scared they would hurt themselves on the hard tile. I thought this was why my son wasn't crawling yet. My nephew being 10 days younger was crawling but I somehow did not realize it.
I also noticed that when I would put Evelio in his walker, he would raise his hands up in the air and shake his head back and forth making himself dizzy with his tongue out. I disregarded this as well. He just wanted to entertain himself. He didn't see alot of other kids so he made his own way to have fun.
Then one day, he was sitting on the floor with his legs folded underneath him so he was resting his bottom on the backs of his legs. He was shaking his head and laughing, and then he started flapping his arms really fast and my boyfriend's (at that time) dad said, "Look Evelio is trying to fly. Fly away, baby, fly away!"
I watched him for a minute laughing. Kids do the darndest things right? Well, I noticed that he flapped his hands alot, but still I saw nothing wrong with it. At that time I didn't know that flapping was a key characteristic of Autism. In fact, I didn't know much about Autism at all. I just figured, "Hey the kid wants to fly!"
Evelio started crawling finally right before he turned a year old. He still seemed pretty normal minus a few slightly weird behaviors previously mentioned. He said 'ma-ma' and made noises by then but no real words. But that's pretty much on track isn't it, for a 1 year old?
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| First Birthday Party 9.28.07 |
The Beginning
I've never had a blog before, but I thought it would help me vent and share with others my experiences with my severely Autistic, non-verbal son Evelio. I am starting with some background information on my son and a little about myself. I decided to break it up into a few separate posts. . .Well, here goes. . .
I was 16 years old when my son, Evelio, was born.
While I was pregnant, I was so overwhelmed with the thought of being such a young parent, that possibilities of other factors in my unborn child's life hadn't crossed my mind. Not only was I to be a 16 year old mother, I was going to be a 16 year old SINGLE mother.
When I saw Evelio for the first time, all fears and worries vacated my mind (temporarily of course) and were replaced with absolute astonishment at the fact that I had created this little 6 pound 1 ounce baby boy. He was born premature (a little over 5 weeks). However, his pediatrician was delighted to inform me that he was extremely healthy for being so early. The only "problem" he had was that he was unable to suck on the nipple of the bottle, otherwise. . .perfectly healthy. He was in the hospital for 6 days after he was born and then I took him home.
I adjusted to being a mother easier and faster than I thought I would have. Before I became pregnant, I always said I never wanted kids, (and as I think about it, of course I would have said that! I was only 16!) But, motherhood was something that came as an instinct for me I guess. I was surprised by this, seeing as my own mother was not the best role model. However, seeing as this blog is not about myself, I will refrain from explaining her any further. Anyhow, as it turned out, I came to love being his mother.
I was 16 years old when my son, Evelio, was born.
While I was pregnant, I was so overwhelmed with the thought of being such a young parent, that possibilities of other factors in my unborn child's life hadn't crossed my mind. Not only was I to be a 16 year old mother, I was going to be a 16 year old SINGLE mother.
When I saw Evelio for the first time, all fears and worries vacated my mind (temporarily of course) and were replaced with absolute astonishment at the fact that I had created this little 6 pound 1 ounce baby boy. He was born premature (a little over 5 weeks). However, his pediatrician was delighted to inform me that he was extremely healthy for being so early. The only "problem" he had was that he was unable to suck on the nipple of the bottle, otherwise. . .perfectly healthy. He was in the hospital for 6 days after he was born and then I took him home.
I adjusted to being a mother easier and faster than I thought I would have. Before I became pregnant, I always said I never wanted kids, (and as I think about it, of course I would have said that! I was only 16!) But, motherhood was something that came as an instinct for me I guess. I was surprised by this, seeing as my own mother was not the best role model. However, seeing as this blog is not about myself, I will refrain from explaining her any further. Anyhow, as it turned out, I came to love being his mother.
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