Something heart-stopping just happened and I just need to get it out.
Beforehand, people should note that Autistic children are NOTORIOUS wanderers. My son is not an exception. He will set his mind on going somewhere and, if he has more than 2 seconds supervisor-free, off he goes with no regard to his surroundings. Now, he hasn't wandered away in probably a year. However, today, he felt the urge.
I just got home, so I didn't shut the front door. I left the big door open and only shut the screen door and forgot to lock it and set the door alarm. Evelio was watching Thomas the Train and I took him to potty. Then, I had to go so I sent him back to the living room where I assumed he would resume his movie. I was in the bathroom for probably 30 seconds. My sister was in the kitchen preparing a bottle for her brand new 6 day old baby boy. I came out of the bathroom and didn't see Evelio in the living room. I asked her where he was. She said that he had come out of the bathroom, but that she didn't hear the screen door open. We spent probably 10 seconds checking the other rooms in the house. I then ran outside and looked down the street.
My heart froze in my chest as I saw his bright yellow t-shirt in the middle of a busy street in front of the school that is a block and a half from our house. He was stopped in the middle of the street flapping and jumping. I'm betting that seeing the cars' wheels spinning caused him to "stim-out". Anyhow, I took off running, bare-footed. The cars were slamming on their brakes in order to avoid running him over. Luckily, it was right between 4:00 and 4:30 pm, so the school speed zone lights were flashing so cars were going very slowly. It was also extremely lucky that he was wearing a very bright yellow tshirt that made him easy to see.
He made it across the street and I lost sight of him. At this point, I was going into hysterics. I was running as fast as I could possibly go and I couldn't see how I could catch him. Some kids were walking down the street and asked me if I was looking for "the kid in the yellow shirt". I frantically said yes. They said "He almost got hit by a car!" I nodded to indicate that I knew that, while continuing to run. They then told me that he ran toward the back of the school. I ran around the corner and I saw him. Across two parking lots and down a flight of cement stairs, and across the playground, where was he?
At the swing set, climbing on a swing. I finally got to him. I was shaking so bad, I felt lightheaded and felt as if I was going to pass out. I threw my arms around him and just held on to him. He kept pushing me back and trying to put my hand on the swing chain to communicate that he wanted me to swing him. I started walking him back towards my house, when a special education teacher, who just so happens to work at Evelio's school across town, was pulling out of the parking lot and recognized him. I explained what had happened and why I was so shaken up and in tears, and thankfully, she gave us a ride home.
As I sit here, I am still shaken up. I can only just be so thankful for school speed zones and the fact that he was wearing a bright yellow shirt. What's crazy is, I can't understand how Evelio remembered that there were swings at the school down the street. When he has "escaped" the house before, he has always run the opposite way from the busy street. He has only been to the swing set at the school one time in his life. That was in March of 2011. That's almost 2 years ago. I have no idea what triggered that memory. All I do know is that he knew exactly where he was going and made a B-line for it.
I can just be thankful that he is okay and no one hit him.
Tuesday, December 4, 2012
Tuesday, October 30, 2012
Regression?
Since Evelio has started school (October 1st), only the very first week was great. But, the rest of the time has been a nightmare. Evelio has had two incident reports already, plus a call home yesterday because he was having a "bad day" and the teacher wanted to know if I could pick him up. I couldn't though because I didn't have the car.
Anyway, he actually received the first incident report on the 9th, which was only his second week of school. He was angry because the rest of his class (only three other students), were going to PE and Evelio is not allowed to go. I was not aware of this before as it was NOT discussed during his IEP meeting. When I asked the teacher why he wasn't allowed to attend PE with the other children, she said that PE is mainstreamed with other kids and she didn't feel as if he could cope with organized activities. She asked if I felt that he should go to PE. I said that he should be able to go with an aide and be allowed to run some energy out while the other kids played their kickball or whatever they are doing that day. Anyway, the other kids were going to PE and he was angry that he could not leave the room. He proceeded to "charge" at his teacher a few times, which she deflected whatever blow he was throwing at her. The fourth time, however, she missed and he kicked her a few times in her arm and caused her arthritis to flare up and her arm to swell. She was unaware that it was an arthritic swell at the time. The next day, she arrived at school and noticed that her arm was bruised purple and black and was very painful. So, after a half day, she went to the Emergency Room clinic. The doctor there informed her that it was a flare of her arthritis and that her bone was not broken and advised her to take the next day off. So, she filed the incident report, and, in Evelio's second week of school, he had landed his teacher in the ER.
The second incident report came home today. I was very surprised to find it in his backpack because his teacher did not call me at the time of the incident. This made me upset. I feel that in serious instances such as this, she should call me straight away. Anyhow, the incident report stated that Evelio was eating pretzels and it was time for lunch. The teacher's aide stopped giving Evelio the pretzels, which angered him. This resulted in him "biting the teacher's aide on her inner thigh." The recommendations from the teacher and the principal were to "shorten Evelio's school day."
Now, let me remind you, Evelio only attends school for four hours right now. When I read that the bite was to the "inner thigh" I immediately reacted with "How in the hell did Evelio even get to the teacher's aide's inner thigh?? I called the teacher and explained my concerns. She said that they were both standing and that the aide had Evelio's hands in hers so that he could not scratch her, so instead, Evelio bent over and bit her thigh. The teacher also told me that the bite was bad enough to draw blood. I still am confused as to how he was able to get such a tight grip on her inner thigh while she was standing up, and how she was unable to block the bite to begin with. I understand that he acts fast, but I still don't see how that happened.
Anyhow, I expressed that I completely disagree with shortening his school day because his behavior was not caused by a long day at school. It was caused by refusal to give Evelio pretzels, so I feel that shortening his school day is an inappropriate intervention. I believe that his day is already short enough and that by shortening it more will only inhibit his progress more. The teacher said that she and the principal recommended this because Evelio seems to get more easily agitated after about 10:30 am. I began to explain that, by sending him home early, Evelio is taught that if he hurts someone, he gets to go home. The teacher said, "Well, when he starts injuring people, there's not really much we can do. We are going to try to change the ways in which we re-direct him and say alternative "no" words." I then began to get extremely over-emotional.
I cannot help that I come to tears when things like this happen. It's extremely difficult to know that your child is behaving so badly that he/she is unable to attend school. I voiced to Evelio's teacher that it seems as though people are going to continue to give up on him because he is out of control at times, but how is he going to improve if he is given up on. It seems that every time a problem occurs, the first reaction is to shorten his day. It's like they believe spending even less than the already scant amount of time they work with him is really going to help him learn.
I guess that after I graduate with my Bachelor's in Special Education, I'll just have to stay at home and teach Evelio myself. I feel so heartbroken and lost right now. I feel that all the progress he made while away at school has just gone out the window. This type of behavior is making me feel as if there is no hope for my son, at least while he's at home with me. And this is a heart-crushing feeling. I really want to believe that this is just a phase and one day we will be much farther down the road of progress, but when you have three consecutive weeks of this type of SERIOUS behavior, it's is almost impossible to believe this way. I'm just in tears.
Anyway, he actually received the first incident report on the 9th, which was only his second week of school. He was angry because the rest of his class (only three other students), were going to PE and Evelio is not allowed to go. I was not aware of this before as it was NOT discussed during his IEP meeting. When I asked the teacher why he wasn't allowed to attend PE with the other children, she said that PE is mainstreamed with other kids and she didn't feel as if he could cope with organized activities. She asked if I felt that he should go to PE. I said that he should be able to go with an aide and be allowed to run some energy out while the other kids played their kickball or whatever they are doing that day. Anyway, the other kids were going to PE and he was angry that he could not leave the room. He proceeded to "charge" at his teacher a few times, which she deflected whatever blow he was throwing at her. The fourth time, however, she missed and he kicked her a few times in her arm and caused her arthritis to flare up and her arm to swell. She was unaware that it was an arthritic swell at the time. The next day, she arrived at school and noticed that her arm was bruised purple and black and was very painful. So, after a half day, she went to the Emergency Room clinic. The doctor there informed her that it was a flare of her arthritis and that her bone was not broken and advised her to take the next day off. So, she filed the incident report, and, in Evelio's second week of school, he had landed his teacher in the ER.
The second incident report came home today. I was very surprised to find it in his backpack because his teacher did not call me at the time of the incident. This made me upset. I feel that in serious instances such as this, she should call me straight away. Anyhow, the incident report stated that Evelio was eating pretzels and it was time for lunch. The teacher's aide stopped giving Evelio the pretzels, which angered him. This resulted in him "biting the teacher's aide on her inner thigh." The recommendations from the teacher and the principal were to "shorten Evelio's school day."
Now, let me remind you, Evelio only attends school for four hours right now. When I read that the bite was to the "inner thigh" I immediately reacted with "How in the hell did Evelio even get to the teacher's aide's inner thigh?? I called the teacher and explained my concerns. She said that they were both standing and that the aide had Evelio's hands in hers so that he could not scratch her, so instead, Evelio bent over and bit her thigh. The teacher also told me that the bite was bad enough to draw blood. I still am confused as to how he was able to get such a tight grip on her inner thigh while she was standing up, and how she was unable to block the bite to begin with. I understand that he acts fast, but I still don't see how that happened.
Anyhow, I expressed that I completely disagree with shortening his school day because his behavior was not caused by a long day at school. It was caused by refusal to give Evelio pretzels, so I feel that shortening his school day is an inappropriate intervention. I believe that his day is already short enough and that by shortening it more will only inhibit his progress more. The teacher said that she and the principal recommended this because Evelio seems to get more easily agitated after about 10:30 am. I began to explain that, by sending him home early, Evelio is taught that if he hurts someone, he gets to go home. The teacher said, "Well, when he starts injuring people, there's not really much we can do. We are going to try to change the ways in which we re-direct him and say alternative "no" words." I then began to get extremely over-emotional.
I cannot help that I come to tears when things like this happen. It's extremely difficult to know that your child is behaving so badly that he/she is unable to attend school. I voiced to Evelio's teacher that it seems as though people are going to continue to give up on him because he is out of control at times, but how is he going to improve if he is given up on. It seems that every time a problem occurs, the first reaction is to shorten his day. It's like they believe spending even less than the already scant amount of time they work with him is really going to help him learn.
I guess that after I graduate with my Bachelor's in Special Education, I'll just have to stay at home and teach Evelio myself. I feel so heartbroken and lost right now. I feel that all the progress he made while away at school has just gone out the window. This type of behavior is making me feel as if there is no hope for my son, at least while he's at home with me. And this is a heart-crushing feeling. I really want to believe that this is just a phase and one day we will be much farther down the road of progress, but when you have three consecutive weeks of this type of SERIOUS behavior, it's is almost impossible to believe this way. I'm just in tears.
Friday, October 26, 2012
Do You Believe in Magic?
I have been seeing a lot of graphics and such with the words, "If I could snap my fingers and be non-Autistic, I wouldn't. Autism is a part of me." There are variations to make the saying fit "my son/daughter, sister/brother and so on.
If I could snap my fingers? . . .
I realize there is a lot of controversy associated with this question. There are many people with Autistic family members and Autistic people themselves who are offended at the thought of taking away their Autism. They view their Autism as an integral part of who they are, and without it, they have lost a part of themselves, sons/daughters, etc.
However, I would be lying if I said I wouldn't take away my son's Autism if I the choice was possible. Or at least change the severity of his Autism.
What I try to explain to people when I speak about this subject is that if Autism doesn't just affect Evelio's personality. It's not like he's just anti-social, or has weird tics that are harmless. If it were only that, I believe I could cope just fine with it and I would more than likely view these effects as unique personality traits. And there are some things as a result of his Autism that are personality traits about him that I love and would prefer not to change. Some of these are:
These are issues that I would not have to worry about so much if he were not so severely affected by this damned Autism. I would definitely be lying if I said I didn't HATE it. It comes down to the quality of Evelio's life, and right now while he is blissfully ignorant of just how different he is, life is good in his opinion I am sure. But, I dread the day that he realizes that he can't do things that other kids and young adults will be able to do. It's not that I mind if he lives with me forever; I will ALWAYS be there for him and take care of him while I am alive even if he wasn't so severely affected by Autism. It's the fact that he will have such limited opportunities that my heart breaks for him. I had so many plans for his future when I was pregnant after I got over the shock of being pregnant at 16. I had big dreams for him and what he would become. I still dream that he will be a great adult, however that dream has changed. I fully intend to help him in any way necessary to ensure that he becomes as successful an adult as he can be.
I love my son just the way he is, however, if I could snap my fingers and make the Autism disappear, or even reduce the severity of his Autism, would I do it? . . .
I'd have to say. . .
HELL YES!
If I could snap my fingers? . . .
I realize there is a lot of controversy associated with this question. There are many people with Autistic family members and Autistic people themselves who are offended at the thought of taking away their Autism. They view their Autism as an integral part of who they are, and without it, they have lost a part of themselves, sons/daughters, etc.
However, I would be lying if I said I wouldn't take away my son's Autism if I the choice was possible. Or at least change the severity of his Autism.
What I try to explain to people when I speak about this subject is that if Autism doesn't just affect Evelio's personality. It's not like he's just anti-social, or has weird tics that are harmless. If it were only that, I believe I could cope just fine with it and I would more than likely view these effects as unique personality traits. And there are some things as a result of his Autism that are personality traits about him that I love and would prefer not to change. Some of these are:
- When he bursts out laughing for no visible reason. Just because he views an ordinary thing as hilarious, or maybe he's picturing something in his mind that is insanely funny that he just can't keep his giggles in. His laugh is certainly infectious and I often find myself laughing like a maniac with him. I wish that I could see what he is seeing.
- When he is in a lovey-dovey mood and wants nothing more than to cuddly with me and sing "ay-ya-eee" over and over, or put my hand on his leg and pat it to let me know he wants to be patted, or tells me "tee-tah" in a soft quiet voice because he wants to be tickled. When he's in these moods, he doesn't care who's around or where we are, he just wants love and he is determined to get it. He will kiss me over and over and hug me tight.
- When he's running back and forth in front of our TV and flapping his hands and making all kinds of crazy, random noises. He is just so very happy and it makes me so happy that I actually tear up at how he has no idea that he is different and is just a happy-go-lucky kid.
- Not being able to communicate in the way that he needs to. I am not talking about verbally communicating. I would LOVE for him to start talking, however I have come to terms with the fact that he might never. I just wish that he had some way that he could express himself so that he wouldn't have such a hard time.
- Getting so frustrated that he cannot communicate effectively that he is sent into a meltdown. It gets so severe that, honestly, when I look into his eyes, he doesn't even look like himself. It seems as though he's lost control and some inner, powerful rage, has taken control over him and he is somewhere trapped in the back of his own mind, helpless.
- Simple things, such as the vacuum, or a flickering light, that send him into a frightened meltdown. Whenever this happens, it usually turns into a four to five hour session of screaming, crying, and self-harm consisting of slapping, scratching, and banging his head on the closest object to him. Sometimes it involves throwing things and trying to break things and tossing chairs over.
- The fact that he is SEVERELY developmentally delayed. He is five years old and his mind is like that of a 9 month old to a 18 month old. He is in a class with three other children with some type of disability and his teacher has told me that the other kids try to help him. This gives me the impression that he is even behind them developmentally and they are in first grade. This is a big issue that hinders his future and is EXTREMELY depressing for me.
- His anti-social tendencies scare other children and he is likely never going to have friends. He is happy with being loving with me, Robert, my sister, and a select few ADULTS; however he is NOT at all interested in being friends with kids his own age, or any kids in general. He usually tolerates other children, but they do become his "punching bags" when he is frustrated. It hurts me to know that he will likely never feel the bond between friends, and also makes me worry about the relationship between him and Robert's kids and if I ever have anymore children.
These are issues that I would not have to worry about so much if he were not so severely affected by this damned Autism. I would definitely be lying if I said I didn't HATE it. It comes down to the quality of Evelio's life, and right now while he is blissfully ignorant of just how different he is, life is good in his opinion I am sure. But, I dread the day that he realizes that he can't do things that other kids and young adults will be able to do. It's not that I mind if he lives with me forever; I will ALWAYS be there for him and take care of him while I am alive even if he wasn't so severely affected by Autism. It's the fact that he will have such limited opportunities that my heart breaks for him. I had so many plans for his future when I was pregnant after I got over the shock of being pregnant at 16. I had big dreams for him and what he would become. I still dream that he will be a great adult, however that dream has changed. I fully intend to help him in any way necessary to ensure that he becomes as successful an adult as he can be.
I love my son just the way he is, however, if I could snap my fingers and make the Autism disappear, or even reduce the severity of his Autism, would I do it? . . .
I'd have to say. . .
HELL YES!
Wednesday, October 10, 2012
Back To School: Evelio's First Week
Evelio went back to school here in Duncan on Monday, October 1st.
He turned 5 years old on September 28th. :) Went to see Hotel Transylvania and we all loved it! I'm totally buying it when it comes out on DVD!
Anyhow, Evelio's teacher said that he has been doing great in class. She said that he has been VERY loving towards her and has had no serious aggression issues. YAY! He will squeeze her arm when he's either overstimulated or frustrated but he hasn't hurt anyone .
She told me that she's fallen in love with him :). I should have expected that. It seems that everyone who works with him falls in love with him. I guess it's because when he likes you, he gets VERY lovey-dovey and just wants all your hugs and kisses. He really is a very sweet child when he likes someone. His teacher said she already knows that she's not going to want him to leave her class next year. Which he may not considering she's a first grade teacher and he's still considered a pre-kindergartener. Next year it will be kindergarten and he may or may not be with someone else.
He has had a few accidents since he's been at school which I am very proud to report. He has been eating the lunch I send with him everyday also.
He had an appointment with his psychiatrist last Friday and he's up to 53.3 pounds! He also did very well during the doctor's visit :).
I am just so proud of him and I am so glad he's doing well in school. Just wanted to post a short update on his continued progress and reaction to school :).
He turned 5 years old on September 28th. :) Went to see Hotel Transylvania and we all loved it! I'm totally buying it when it comes out on DVD!
Anyhow, Evelio's teacher said that he has been doing great in class. She said that he has been VERY loving towards her and has had no serious aggression issues. YAY! He will squeeze her arm when he's either overstimulated or frustrated but he hasn't hurt anyone .
She told me that she's fallen in love with him :). I should have expected that. It seems that everyone who works with him falls in love with him. I guess it's because when he likes you, he gets VERY lovey-dovey and just wants all your hugs and kisses. He really is a very sweet child when he likes someone. His teacher said she already knows that she's not going to want him to leave her class next year. Which he may not considering she's a first grade teacher and he's still considered a pre-kindergartener. Next year it will be kindergarten and he may or may not be with someone else.
He has had a few accidents since he's been at school which I am very proud to report. He has been eating the lunch I send with him everyday also.
He had an appointment with his psychiatrist last Friday and he's up to 53.3 pounds! He also did very well during the doctor's visit :).
I am just so proud of him and I am so glad he's doing well in school. Just wanted to post a short update on his continued progress and reaction to school :).
Thursday, September 27, 2012
Yellow Ribbons: Home Sweet Home
Evelio was discharged from Rose Rock Academy on Wednesday, September 26th.
I was set to pick him up at 2pm. My mother-in-law and I arrived in Oklahoma City an hour and a half early. She decided we would wait for the time at the McDonald's down the street (the same McDonald's that Robert and I would take Evelio to on visitation days). I was so impatient. I couldn't sit still. We went to Rose Rock at 1:30pm. I then sat impatiently in the waiting area of the check-in/nurse's station until 2:07pm. Then, Keila finally came in with her intern and discharge papers. Then, I signed my life away and received my copies of everything rather greedily. I was ready to go.
I glanced out the door of the office and I see him. My baby was walking with an aide. She had a duffel bag with all of Evelio's clothes and a huge packet with Evelio's art projects inside.
Becca, his expressive therapist was calling to him from across the courtyard to hug him bye. He ran up to her and gave her a hug. I'm sure he was wondering why everyone was being so lovey-dovey with him. Then I walked out of the office and called to him. He turned and looked at me, smiled, and took off running toward me. I ran toward him too. There wasn't a huge distance between us, but I still felt as though there should be cameras filming this absolutely blissful moment between mother and son so I could watch it over and over again.
Anyhow, I scooped him up in my arms and he kissed me right on the lips. The aide handed Evelio's bag and file to my mother-in-law while I accompanied him to the bathroom. After a cup of water he finally went to the potty. Then, the nurse did one last check-over and went over his meds with me three times to make sure I understood.
When Evelio was admitted, he weighed around 47lbs. I believe he lost some at first and then apparently started gaining because now he weighs 51lbs. Maybe it's because he grew much taller. I'm not exactly sure how tall he was when he was admitted but now he measures at around 48"-49" which is around 4'-4'1" tall.
All the way home, Evelio was laughing and making noises. He was playing with the sunlight, trying to wipe it off his Nani Carrie's leather backseat. When we got home this time, there was no freak out. Just a bigger child, happy to be home.
He was in a great mood all afternoon and evening. Had 1 small accident and then spent 20 minutes on the pot doing you know what. He slept all night other than me waking him up every 3-4 hours to use the potty so that he doesn't wet the bed. I'm trying to teach him that if he gets up at night he should try to go to the potty.
Today, I've been up since 6:15am and Evelio since 7:15am. He has been in a fantastic mood all morning (except when I gave him a haircut, during which, if he could talk, I'm sure he would have been throwing some choice curse words at me). He hates clippers. He became a little nervous and placed his hands over his ears when I vacuumed the living room rug because of the noise of the vacuum.
He has had one accident (#1) today, but that was on the run to the potty to do #2, which I am absolutely bursting with pride to say that he was taking himself to do while I was busy printing off -Birth Defect- notes for my -Human Development and Learning- class. I'm surprised I didn't lose my voice with how loudly I was praising him as he sat with his little poop-strain face while doing his business :).
Anywho, as you can tell I am one happy mama. I am so glad I have my baby back. He starts school on Monday, and until then he and I will absolutely be inseparable!
Now, back to my baby! Bye!
I was set to pick him up at 2pm. My mother-in-law and I arrived in Oklahoma City an hour and a half early. She decided we would wait for the time at the McDonald's down the street (the same McDonald's that Robert and I would take Evelio to on visitation days). I was so impatient. I couldn't sit still. We went to Rose Rock at 1:30pm. I then sat impatiently in the waiting area of the check-in/nurse's station until 2:07pm. Then, Keila finally came in with her intern and discharge papers. Then, I signed my life away and received my copies of everything rather greedily. I was ready to go.
I glanced out the door of the office and I see him. My baby was walking with an aide. She had a duffel bag with all of Evelio's clothes and a huge packet with Evelio's art projects inside.
Becca, his expressive therapist was calling to him from across the courtyard to hug him bye. He ran up to her and gave her a hug. I'm sure he was wondering why everyone was being so lovey-dovey with him. Then I walked out of the office and called to him. He turned and looked at me, smiled, and took off running toward me. I ran toward him too. There wasn't a huge distance between us, but I still felt as though there should be cameras filming this absolutely blissful moment between mother and son so I could watch it over and over again.
Anyhow, I scooped him up in my arms and he kissed me right on the lips. The aide handed Evelio's bag and file to my mother-in-law while I accompanied him to the bathroom. After a cup of water he finally went to the potty. Then, the nurse did one last check-over and went over his meds with me three times to make sure I understood.
When Evelio was admitted, he weighed around 47lbs. I believe he lost some at first and then apparently started gaining because now he weighs 51lbs. Maybe it's because he grew much taller. I'm not exactly sure how tall he was when he was admitted but now he measures at around 48"-49" which is around 4'-4'1" tall.
All the way home, Evelio was laughing and making noises. He was playing with the sunlight, trying to wipe it off his Nani Carrie's leather backseat. When we got home this time, there was no freak out. Just a bigger child, happy to be home.
He was in a great mood all afternoon and evening. Had 1 small accident and then spent 20 minutes on the pot doing you know what. He slept all night other than me waking him up every 3-4 hours to use the potty so that he doesn't wet the bed. I'm trying to teach him that if he gets up at night he should try to go to the potty.
Today, I've been up since 6:15am and Evelio since 7:15am. He has been in a fantastic mood all morning (except when I gave him a haircut, during which, if he could talk, I'm sure he would have been throwing some choice curse words at me). He hates clippers. He became a little nervous and placed his hands over his ears when I vacuumed the living room rug because of the noise of the vacuum.
He has had one accident (#1) today, but that was on the run to the potty to do #2, which I am absolutely bursting with pride to say that he was taking himself to do while I was busy printing off -Birth Defect- notes for my -Human Development and Learning- class. I'm surprised I didn't lose my voice with how loudly I was praising him as he sat with his little poop-strain face while doing his business :).
Anywho, as you can tell I am one happy mama. I am so glad I have my baby back. He starts school on Monday, and until then he and I will absolutely be inseparable!
Now, back to my baby! Bye!
Tuesday, September 18, 2012
The Anticipation is Killing Me!
I am super duper overly excited for Evelio to come home!
His 2-day pass last week went AMAZING.
He was very well behaved, but very, very, very hyper. We had a sticky spot when we first got home. I have new living room furniture and a new desk in my dining room and apparently Evelio was thinking that this was not his house. He was shaking and crying and freaking out. After about an hour in mommy's bed watching "Fairly Odd Parents", he finally became curious enough to explore the house. We have glass-topped coffee and end tables. Evelio is not used to that either. It was so funny!
So picture this, he was standing in front of the TV watching "Happy Feet" and flapping and jumping away. At the same time, he was backing up a little bit with each jump. He eventually ran into the coffee table. He turned around while holding his little backside, (I'm sure the sharpness of the edge of the glass startled him and hurt him a little) and looked at the table with his eyebrows furrowed together. He slowly reached his hand out and touched the glass. He moved his hand around on the glass and then pulled it back and looked at it. He then touched his palm to his lips and then slowly moved it down until it ran into the table again. All the time he had this curious and focused look on his face. I was cracking up. I imagine that his mind couldn't understand why there was something solid there if he could see through it. It was amazing to watch him concentrate and learn about the glass!
Anyway, he was great while he was at home. I took him to the local spray park down the street (splash pad) and he absolutely LOVED it. He loves water.
His 2-day pass last week went AMAZING.
He was very well behaved, but very, very, very hyper. We had a sticky spot when we first got home. I have new living room furniture and a new desk in my dining room and apparently Evelio was thinking that this was not his house. He was shaking and crying and freaking out. After about an hour in mommy's bed watching "Fairly Odd Parents", he finally became curious enough to explore the house. We have glass-topped coffee and end tables. Evelio is not used to that either. It was so funny!
So picture this, he was standing in front of the TV watching "Happy Feet" and flapping and jumping away. At the same time, he was backing up a little bit with each jump. He eventually ran into the coffee table. He turned around while holding his little backside, (I'm sure the sharpness of the edge of the glass startled him and hurt him a little) and looked at the table with his eyebrows furrowed together. He slowly reached his hand out and touched the glass. He moved his hand around on the glass and then pulled it back and looked at it. He then touched his palm to his lips and then slowly moved it down until it ran into the table again. All the time he had this curious and focused look on his face. I was cracking up. I imagine that his mind couldn't understand why there was something solid there if he could see through it. It was amazing to watch him concentrate and learn about the glass!
Anyway, he was great while he was at home. I took him to the local spray park down the street (splash pad) and he absolutely LOVED it. He loves water.
He also did very well using the potty. He had two #2 accidents which I'm pretty sure were my fault (I gave him grapes, which gave him diarrhea). He also wet the bed one time during the night. But he did great with using the potty without having #1 accidents during the day!
Since he did well during pass, he gets to come home on the 26th! I don't think time has EVER moved this slowly! I just cannot wait!
We had his IEP meeting this morning and discussed his placement for this year. I am super happy that he will be able to attend school for 4 hours instead of 2 that he had last year. And. . . he gets to go to school on Fridays this year too! His new teacher, Mrs. Charitan, is very likable and funny and I love her already! Her room looks fantastic. She only has 3 other students in her class at the moment so Evelio will be number 4.
So here's to hoping that the 26th gets here in a hurry or I just might die of anticipation!
Thursday, September 6, 2012
One Day to the Next
From Wednesday to Thursday, my world, in terms of feelings, went topsy turvy.
Wednesday
Overall, Wednesday was a terrible day.
Firstly, I contacted a local brand new ABA Therapy center to talk with someone about possibly enrolling Evelio in services when he is discharged. The owner called me back and asked for my e-mail so that I could fill out preliminary paperwork. At the end of the phone call, she asked me if I had any other questions at that time. I then asked if she would be accepting SoonerCare Insurance (Oklahoma Medicaid). Her answer was that unfortunately, most insurance companies were not covering ABA therapies at this time and especially not medicaid. That most likely, I would have to wait until the health insurance reform bill goes through. BIG LET DOWN. However, I explained that SoonerCare was covering the ABA therapy that Evelio is receiving at his residential school and that SoonerCare had to pay much more money to them than they would be responsible for if the center was local and there would be no live-in costs. She then said she would do some more looking around for me and then let me know, and until then I could look at the paperwork. This paperwork has the prices charged on it. OMG! It is ridiculously expensive. Now, I am not blaming the ABA therapist who set the prices. Anywhere you go for ABA, the price of it is extremely high. I became very depressed because if SoonerCare refuses to cover it, there is absolutely NO WAY I can afford this for my son. I'm talking $60/hr expensive. It got me thinking of how you really have to be rich in order to afford quality and necessary intervention services and therapies for your child(ren).
On top of that, around 5:00 pm I get a call from the business management/billing office of the residential school that Evelio attends. She says that their records are showing a discrepancy during the month of June where his SoonerCare was inactive for 12 days. I explained that SoonerCare had sent a recertification letter to me during the month of May and I chose to do this over the Internet. I did the application online again and it said that he was approved again. About a week later, a letter came in the mail saying that he was covered and who his primary care physician was. Then, a few days later, another letter came that said he was NOT covered. So, I re-applied online again and again it said he was covered. The same letter came confirming coverage, and then the letter declaring non-coverage came. I finally called our local Department of Human Services and they said that since my son has a disability, I would have to apply in-office. So I did. At my interview appointment, the worker told me that online, as soon as I entered the information that my son receives SSI/Disability or put in that he has a mental disability, a message should have popped up and told me to go to my local office. I explained that it didn't either time that I applied online. Anyway she ended up saying that I was covered. When I reported back to my son's therapist I was informed that the situation was taken care of and he was covered. Then she informed me that she had been under the impression that it had been taken care of as well, however she had just been contacted by SoonerCare with a message that the rules had changed and they would not backpay any previous medical charges while the insurance showed as inactive. "So what does this mean?" I asked. And what she said made me drop my phone and my heart stop. "You will be receiving a bill for approximately $7000 in the mail." I felt like I was going to pass out. All I could do was cry. Sure, I can make payments, however THIS IS NOT FAIR and I'll end up paying this for the rest of my life.
However, Thursday got a little better.
I had been sad all day thinking about the things that happened on Wednesday. I called Evelio's therapist and talked to her about that HORRENDOUS bill. She advised me to call SoonerCare and get this straightened out and also gave me another name and number of someone that could help me better with the situation than she could. Then I started talking about my plans for Evelio to come home sooner than they had planned and how I was scared to pull him out against medical advice, because what if SoonerCare refuses to pay for the entire 4 months that he's been up there if I take him out against the doctor's advice. She stopped me in the middle of my random, ranting worries. She told me that she had spoken with Evelio's doctor and that the doctor had a plan. She said that if I take Evelio on a 2-day home pass on Monday (so that he would be back at school on Wednesday) and he behaves and is good, that he will be allowed to discharge on SEPTEMBER 26th!!! That's 2 days before his birthday. I felt like I was going to cry then too. But out of joy. I am so glad that this news came today because it's just what I needed. So now I have something to look forward to. I am super excited to finally have my baby back home after a very long time apart. He has made a lot of progress with self-help skills and therapy tasks, and is now able to use the potty with almost no accidents. That news washed away all my despair that was brought on by the monster of Wednesday. Although Wednesday was a terrible nightmare, Thursday totally changed the way I feel.
It got better from one day to the next.
Wednesday
Overall, Wednesday was a terrible day.
Firstly, I contacted a local brand new ABA Therapy center to talk with someone about possibly enrolling Evelio in services when he is discharged. The owner called me back and asked for my e-mail so that I could fill out preliminary paperwork. At the end of the phone call, she asked me if I had any other questions at that time. I then asked if she would be accepting SoonerCare Insurance (Oklahoma Medicaid). Her answer was that unfortunately, most insurance companies were not covering ABA therapies at this time and especially not medicaid. That most likely, I would have to wait until the health insurance reform bill goes through. BIG LET DOWN. However, I explained that SoonerCare was covering the ABA therapy that Evelio is receiving at his residential school and that SoonerCare had to pay much more money to them than they would be responsible for if the center was local and there would be no live-in costs. She then said she would do some more looking around for me and then let me know, and until then I could look at the paperwork. This paperwork has the prices charged on it. OMG! It is ridiculously expensive. Now, I am not blaming the ABA therapist who set the prices. Anywhere you go for ABA, the price of it is extremely high. I became very depressed because if SoonerCare refuses to cover it, there is absolutely NO WAY I can afford this for my son. I'm talking $60/hr expensive. It got me thinking of how you really have to be rich in order to afford quality and necessary intervention services and therapies for your child(ren).
On top of that, around 5:00 pm I get a call from the business management/billing office of the residential school that Evelio attends. She says that their records are showing a discrepancy during the month of June where his SoonerCare was inactive for 12 days. I explained that SoonerCare had sent a recertification letter to me during the month of May and I chose to do this over the Internet. I did the application online again and it said that he was approved again. About a week later, a letter came in the mail saying that he was covered and who his primary care physician was. Then, a few days later, another letter came that said he was NOT covered. So, I re-applied online again and again it said he was covered. The same letter came confirming coverage, and then the letter declaring non-coverage came. I finally called our local Department of Human Services and they said that since my son has a disability, I would have to apply in-office. So I did. At my interview appointment, the worker told me that online, as soon as I entered the information that my son receives SSI/Disability or put in that he has a mental disability, a message should have popped up and told me to go to my local office. I explained that it didn't either time that I applied online. Anyway she ended up saying that I was covered. When I reported back to my son's therapist I was informed that the situation was taken care of and he was covered. Then she informed me that she had been under the impression that it had been taken care of as well, however she had just been contacted by SoonerCare with a message that the rules had changed and they would not backpay any previous medical charges while the insurance showed as inactive. "So what does this mean?" I asked. And what she said made me drop my phone and my heart stop. "You will be receiving a bill for approximately $7000 in the mail." I felt like I was going to pass out. All I could do was cry. Sure, I can make payments, however THIS IS NOT FAIR and I'll end up paying this for the rest of my life.
However, Thursday got a little better.
I had been sad all day thinking about the things that happened on Wednesday. I called Evelio's therapist and talked to her about that HORRENDOUS bill. She advised me to call SoonerCare and get this straightened out and also gave me another name and number of someone that could help me better with the situation than she could. Then I started talking about my plans for Evelio to come home sooner than they had planned and how I was scared to pull him out against medical advice, because what if SoonerCare refuses to pay for the entire 4 months that he's been up there if I take him out against the doctor's advice. She stopped me in the middle of my random, ranting worries. She told me that she had spoken with Evelio's doctor and that the doctor had a plan. She said that if I take Evelio on a 2-day home pass on Monday (so that he would be back at school on Wednesday) and he behaves and is good, that he will be allowed to discharge on SEPTEMBER 26th!!! That's 2 days before his birthday. I felt like I was going to cry then too. But out of joy. I am so glad that this news came today because it's just what I needed. So now I have something to look forward to. I am super excited to finally have my baby back home after a very long time apart. He has made a lot of progress with self-help skills and therapy tasks, and is now able to use the potty with almost no accidents. That news washed away all my despair that was brought on by the monster of Wednesday. Although Wednesday was a terrible nightmare, Thursday totally changed the way I feel.
It got better from one day to the next.
Monday, August 27, 2012
The Firsts
These last two weeks have seen many first days of school for little children. Pictures are taken of excited and nervous kids holding on to parents' hands or crying as their parents are leaving them in the classroom. Seeing all these photos got me thinking a lot about Evelio.
Just as an update, August 27th made 4 full months that Evelio has been at his residential school in Oklahoma City.
First of all, when my son was born a lot of my friends had either just had a baby or were pregnant, with the result that a huge number of my (would have been) graduating class (2009) have children around the same age as Evelio. So, naturally my Facebook newsfeed has been blown up with first day of pre-k or kindergarten photos. Anyhow, out of all of my old friends on my Facebook page that have children the same age, Evelio is the only child that has Autism.
These 'first day' pictures got me thinking of all the firsts Evelio has experienced and how different his firsts are from neurotypical children and how I react to his firsts, and also some firsts that he may never reach. That sounds a tad bit confusing I know, so I'll try to explain.
First Day of School
Neurotypical Child-
Hannah is 4 years old. She was so excited that she hardly slept at all last night. She was so happy when her dad came to her room this morning and turned on her light. Today is her first day of school. Her and her mom already picked out her clothes for school last night and hung them in the bathroom. After her bath, her mom helps her get dressed and pulls her hair into a ponytail with a big bow hairtie. She puts on her brand-new Hello Kitty backpack and hurries her parents to the car. When she gets to school, her parents walk with her inside to her classroom. Her teacher's name is Ms. Kelly. Hannah is very nervous but cannot stop smiling when she sees the nametag at her table. Her teacher shows her which cubby belongs to her and she stows away her backpack and her class heads to breakfast in the cafeteria. Her parents are still with her. She eats breakfast while her parents are busy snapping pictures of her. Then, it's time to go back to the classroom. She sits in her seat and her parents kneel down to give her a goodbye kiss and wish her luck on her first day. They both have tears, but Hannah has a great first day and makes 2 new friends.
Evelio-
Evelio turned 3 yesterday. Today is his first day of Plato Little House (Local early childhood special education). His class is the afternoon session scheduled to start at 1pm and end at 3pm. His mom was so nervous she didn't hardly sleep and was up at the crack of dawn. After Evelio eats a lunch of 6 chicken nuggets and drinks some water, mom puts him the bathtub. He loves his bath and is reluctant to get out. Mom gets him dressed and helps him brush his teeth, (she has to fight with him). She grabs his little blue backpack and throws a few diapers inside. She puts it around his shoulders. He freaks out and throws it off with a scream. She decides to carry it instead. She takes his hand and walks with him out to his bus stop. A white suburban pulls up and a friendly man named Mr. Bob steps out to buckle Evelio into a booster seat. Evelio is not paying attention when his mom tells him that he is going to school. He loves car rides so he's perfectly content and cooperates with being strapped in his seat. Mom starts to cry as she kisses his cheek one more time and shuts the suburban door. Meanwhile, Evelio is perfectly happy and flapping his arms and looking out the window completely oblivious to his mom's words. Evelio returns home with a grumpy attitude and a note saying he had an okay but stressful day.
(not his first day but just turned 3)
First Colored Picture
Neurotypical Child-
Michael is two and a half years old. He's sitting at the table with his new Cars 2 coloring book open to his favorite picture of Lightning McQueen and a box of jumbo crayons is lying next to it. His mom is sitting beside him telling him to color her a picture. She hands him a red Crayola and touches it to the paper for him. He scribbles around the paper a few times and smiles as he sees the color traces left behind. He eagerly tries every color on the table. Then Mom tears out the paper and together they magnet it to the fridge.
Evelio-
Evelio is about to turn 5 years old. He's in a family therapy session with his mom and Robert and his therapist, Keila. There is a picture of Spiderman on the small desk-like table in front of him and a box of crayons/colored pencils. Keila tells him to color the picture. She hands him a red Crayola and touches it to the paper. He puts the crayon in his mouth and starts to chew on it. His mom tells him no and takes the crayon away and gives him a different color. This crayon heads straight for Evelio's mouth as well, but this time his mom puts her hand over his and makes it draw a line across the paper. Evelio briefly glances at the paper and tries to eat the crayon again. His mom tells him no, and helps him scribble a little bit. He is getting frustrated; he wants to eat the crayon. After using 3 crayons on the paper, they all decide to move on to something else. When Evelio's mom gets home she magnets the paper to her fridge and admires that she and her son did it together.
-Just a month and a half ago, Evelio put a pegged, color-picture animal matching picture puzzle together in just over one minute by himself. http://youtu.be/qLNfKGbbDfs
-Same time frame, Evelio put matching shapes into a shape sorter with no help. http://youtu.be/QGUgLoVXzPc
-Two weeks ago, Evelio made his own cup of water from a Ozarka water dispenser, drank it without spilling and threw it away all by himself.
-Evelio is now in underwear 24/7 and as long as he is toileted every hour will not pee on himself.
-Although he still has accidents, so far Evelio has went number 2 in the potty 3 times.
-At age 4, Evelio started putting on his sandals by himself, and would put his socks on by himself.
-Now Evelio will put all of his clothes on including socks and shoes with minimal assistance as long as you hand him his clothes.
-The beginning of 2012, Evelio learned how to manipulate the iPad and iPhone to play his favorite apps. http://youtu.be/LetlyqOb92A
-A few months ago, Evelio learned and started signing "please" for treats.
-At age 3, Evelio could sign that he wanted food or drink. http://youtu.be/QlgbWWhR9Fo
-Evelio can vocalize his own version of tickle "tee-tah" and bye-bye "bah-bah".
Just as an update, August 27th made 4 full months that Evelio has been at his residential school in Oklahoma City.
First of all, when my son was born a lot of my friends had either just had a baby or were pregnant, with the result that a huge number of my (would have been) graduating class (2009) have children around the same age as Evelio. So, naturally my Facebook newsfeed has been blown up with first day of pre-k or kindergarten photos. Anyhow, out of all of my old friends on my Facebook page that have children the same age, Evelio is the only child that has Autism.
These 'first day' pictures got me thinking of all the firsts Evelio has experienced and how different his firsts are from neurotypical children and how I react to his firsts, and also some firsts that he may never reach. That sounds a tad bit confusing I know, so I'll try to explain.
First Day of School
Neurotypical Child-
Hannah is 4 years old. She was so excited that she hardly slept at all last night. She was so happy when her dad came to her room this morning and turned on her light. Today is her first day of school. Her and her mom already picked out her clothes for school last night and hung them in the bathroom. After her bath, her mom helps her get dressed and pulls her hair into a ponytail with a big bow hairtie. She puts on her brand-new Hello Kitty backpack and hurries her parents to the car. When she gets to school, her parents walk with her inside to her classroom. Her teacher's name is Ms. Kelly. Hannah is very nervous but cannot stop smiling when she sees the nametag at her table. Her teacher shows her which cubby belongs to her and she stows away her backpack and her class heads to breakfast in the cafeteria. Her parents are still with her. She eats breakfast while her parents are busy snapping pictures of her. Then, it's time to go back to the classroom. She sits in her seat and her parents kneel down to give her a goodbye kiss and wish her luck on her first day. They both have tears, but Hannah has a great first day and makes 2 new friends.
Evelio-
Evelio turned 3 yesterday. Today is his first day of Plato Little House (Local early childhood special education). His class is the afternoon session scheduled to start at 1pm and end at 3pm. His mom was so nervous she didn't hardly sleep and was up at the crack of dawn. After Evelio eats a lunch of 6 chicken nuggets and drinks some water, mom puts him the bathtub. He loves his bath and is reluctant to get out. Mom gets him dressed and helps him brush his teeth, (she has to fight with him). She grabs his little blue backpack and throws a few diapers inside. She puts it around his shoulders. He freaks out and throws it off with a scream. She decides to carry it instead. She takes his hand and walks with him out to his bus stop. A white suburban pulls up and a friendly man named Mr. Bob steps out to buckle Evelio into a booster seat. Evelio is not paying attention when his mom tells him that he is going to school. He loves car rides so he's perfectly content and cooperates with being strapped in his seat. Mom starts to cry as she kisses his cheek one more time and shuts the suburban door. Meanwhile, Evelio is perfectly happy and flapping his arms and looking out the window completely oblivious to his mom's words. Evelio returns home with a grumpy attitude and a note saying he had an okay but stressful day.
(not his first day but just turned 3)First Colored Picture
Neurotypical Child-
Michael is two and a half years old. He's sitting at the table with his new Cars 2 coloring book open to his favorite picture of Lightning McQueen and a box of jumbo crayons is lying next to it. His mom is sitting beside him telling him to color her a picture. She hands him a red Crayola and touches it to the paper for him. He scribbles around the paper a few times and smiles as he sees the color traces left behind. He eagerly tries every color on the table. Then Mom tears out the paper and together they magnet it to the fridge.
Evelio-
Evelio is about to turn 5 years old. He's in a family therapy session with his mom and Robert and his therapist, Keila. There is a picture of Spiderman on the small desk-like table in front of him and a box of crayons/colored pencils. Keila tells him to color the picture. She hands him a red Crayola and touches it to the paper. He puts the crayon in his mouth and starts to chew on it. His mom tells him no and takes the crayon away and gives him a different color. This crayon heads straight for Evelio's mouth as well, but this time his mom puts her hand over his and makes it draw a line across the paper. Evelio briefly glances at the paper and tries to eat the crayon again. His mom tells him no, and helps him scribble a little bit. He is getting frustrated; he wants to eat the crayon. After using 3 crayons on the paper, they all decide to move on to something else. When Evelio's mom gets home she magnets the paper to her fridge and admires that she and her son did it together.
Those are just two examples of how those two firsts went for me. But other firsts I celebrate with Evelio that neurotypical parents probably reached years ago or won't experience are:-Just a month and a half ago, Evelio put a pegged, color-picture animal matching picture puzzle together in just over one minute by himself. http://youtu.be/qLNfKGbbDfs
-Same time frame, Evelio put matching shapes into a shape sorter with no help. http://youtu.be/QGUgLoVXzPc
-Two weeks ago, Evelio made his own cup of water from a Ozarka water dispenser, drank it without spilling and threw it away all by himself.
-Evelio is now in underwear 24/7 and as long as he is toileted every hour will not pee on himself.
-Although he still has accidents, so far Evelio has went number 2 in the potty 3 times.
-At age 4, Evelio started putting on his sandals by himself, and would put his socks on by himself.
-Now Evelio will put all of his clothes on including socks and shoes with minimal assistance as long as you hand him his clothes.
-The beginning of 2012, Evelio learned how to manipulate the iPad and iPhone to play his favorite apps. http://youtu.be/LetlyqOb92A
-A few months ago, Evelio learned and started signing "please" for treats.
-At age 3, Evelio could sign that he wanted food or drink. http://youtu.be/QlgbWWhR9Fo
-Evelio can vocalize his own version of tickle "tee-tah" and bye-bye "bah-bah".
There is also one thing that may never come. . .Speech
His therapist is hopeful because he is vocal, making noises and the fact that he has made his own version of tickle and bye-bye. However, at the moment I do not think he will speak in any kind of funcional speech any time soon, nor do I think that if he ever does say more words or begin to communicate his needs into phrases or god-willing sentences, that anyone other than those closest to him will understand him. However, I have come to terms with this fact, and although I still get down about it, I have realized that there are more important things that he needs to accomplish.
Another thing I do not get to celebrate right now is grade level. Evelio technically this year should be in Pre-K, however he was placed in the Pre-K class of special needs children last year because of his size and the fact that his birthday is only 7 days past the cut-off of September 21st. This year, when he comes home, I'm not sure what grade he will be classified under or the next year or the next. Which brings me to the question of how and if he will ever graduate high school. . . Those thoughts get me down, especially as I see so many children starting school and making friends. . . . My son may never have that. . . But I hope that he does.
And that is one thing I'm not short of. . . .HOPE. I will never give up on my son nor will I ever take anything for granted. I celebrate EVERY TINY PROGRESS as small as walking on his heels instead of his tip-toes. I just try to remind myself that while his future (and present) will be very different from his neurotypical peers, he definately has one and together, we will make the best of it.
Monday, July 30, 2012
Progress or Square One?
Evelio has been away at school for 3 months as of July 27th. Everyone is asking me, "So is he doing better?" or "They're helping him right?"
It's hard to answer these questions without going into a long explanation of what's been going on.
Now, I have no doubt in my mind that his therapists are trying to help him. His personal staff (1:1 aides) seem to have the most trouble with him. Obviously, it is not their job to work with him; they are there solely for supervision. To best explain how he is doing, I find it necessary to break it down into categories.
Therapy
The good - He is learning a lot during his therapy sessions with Keila. He can now do peg, color coded puzzles with very limited guidance in just over a minute. YAY! He can also thread extra large beads onto shoestrings with almost no guidance. He is able to stack pretty much anything with little guidance. He also will follow simple commands like, "pull the door closed", "push the door open". "turn the shape around", "pour the water over the flowers", "put on your shoes", "pull your pants up", "put your feet on the floor", "pull your desk up to you", and "walk on your heels." This gets me very excited. He has also learned how to get his own paper cup, and work the little water machine by pushing the lever down and filling his cup up, drinking it, and throwing the cup away. YAY again! He is also out of pull-ups. HUGE CELEBRATION! Still not exactly potty-trained, but is being toileted every hour so they experience almost no accidents. I'm sure he'll get used to the routine and eventually signal 'it's potty time' or maybe even take himself to the bathroom.
The bad - As he will use the potty to pee, they are having extreme difficulty getting him to go number 2. He has gone number 2 while I was there one time. We think it was because they happen to catch it in time, and it was too late for him to stop going. He is extremely irregular and has gone 4-5 days with no BM. :( He has had to be given laxatives so that he will go.
Aggression
The good - He has very little aggression with Keila. Also the expressive therapist experiences almost no outbursts. He has formed deep relationships with both of these women.
The bad - EVERYONE else sees aggressive and violent outbursts multiple times per shift. His 1:1 aides see the most outbursts than anyone else. I believe I know why. Evelio likes attention. He likes to be center stage. He loves to be praised. His 1:1 aides are not as close to him as his therapists. They do not work with him like the therapists do. He does not feel a bond with them. Also, they only really show him attention when he is doing something wrong. This, in my opinion, is teaching bad behavior. He has a purpose for doing everything that he does. I always tell them if he is doing something bad, tell him to stop in a calm tone-of-voice. If he starts thrashing around, ignore the behavior and he will eventually see that he is not getting any reaction. Then, when he does something good/right over exaggerate your praise. Say "YAY" and clap your hands and smile. He enjoys the reaction. That will teach him to behave well and do the right thing and people will show attention to you. Also, his state insurance coverage recently requested proof that he needed a 1:1 aide still. He was placed with another child and one aide. The result was disastrous. It only lasted a few hours, during which he attacked several children and became so distraught with separation anxiety that Keila found him in his room on his bed sobbing. It took her an hour to calm him down enough to take a nap. I am very upset that he went through this even just for a few hours. He is not ready, and in my opinion will not be ready to be taken off 1:1 assistance for a long time. He is much too dependant on the attention and has to be assisted with almost every daily task for this. I just hope that it hasn't set him back too far. Overall, his aggression has not improved much, and in some areas, has worsened.
Health and Appetite
The good - He is growing and not ill.
The bad - He hardly ever eats anything. He is an extremely picky eater and will go days without eating even if he is starving. If the food isn't something he loves, he will not eat it. No ifs, ands, or buts, it will not get touched. Example: He loves Trix yogurt but absolutely refuses Yoplait yogurt. One visitation day I got there at 5pm and Keila told me that aside from Skittles, Evelio had eaten 10 Cheerios all day long. This has resulted in quite a bit of weight loss although I will contribute some of his weight loss to growth spurt. They have given up on trying to get him to eat what he is served at the moment, because it would seriously threaten his health. They are not serving him junk food, but if he wants 3 extra bananas, he gets them. He is also being given vitamin supplements. They are trying various protein sources like shakes and Magic Cups (ice cream or pudding) but so far he doesn't like any of that. I suggested maybe stirring protein powder or something into his Trix yogurt. This has also resulted in his irregularity.
All-in-all, I believe he will not be ready to come home any time soon. Keila was telling me a few weeks ago that he might be coming home by the end of October, however, how he melted down after being taken off 1:1 assistance, I don't see that happening. (He can't be released if he is unable to function without 1:1 assistance :( ).
I miss him so much. He has grown so much also :(. Every time I see him he looks older. I'm just so ready to bring him home.
April 2012
It's hard to answer these questions without going into a long explanation of what's been going on.
Now, I have no doubt in my mind that his therapists are trying to help him. His personal staff (1:1 aides) seem to have the most trouble with him. Obviously, it is not their job to work with him; they are there solely for supervision. To best explain how he is doing, I find it necessary to break it down into categories.
Therapy
The good - He is learning a lot during his therapy sessions with Keila. He can now do peg, color coded puzzles with very limited guidance in just over a minute. YAY! He can also thread extra large beads onto shoestrings with almost no guidance. He is able to stack pretty much anything with little guidance. He also will follow simple commands like, "pull the door closed", "push the door open". "turn the shape around", "pour the water over the flowers", "put on your shoes", "pull your pants up", "put your feet on the floor", "pull your desk up to you", and "walk on your heels." This gets me very excited. He has also learned how to get his own paper cup, and work the little water machine by pushing the lever down and filling his cup up, drinking it, and throwing the cup away. YAY again! He is also out of pull-ups. HUGE CELEBRATION! Still not exactly potty-trained, but is being toileted every hour so they experience almost no accidents. I'm sure he'll get used to the routine and eventually signal 'it's potty time' or maybe even take himself to the bathroom.
The bad - As he will use the potty to pee, they are having extreme difficulty getting him to go number 2. He has gone number 2 while I was there one time. We think it was because they happen to catch it in time, and it was too late for him to stop going. He is extremely irregular and has gone 4-5 days with no BM. :( He has had to be given laxatives so that he will go.
Aggression
The good - He has very little aggression with Keila. Also the expressive therapist experiences almost no outbursts. He has formed deep relationships with both of these women.
The bad - EVERYONE else sees aggressive and violent outbursts multiple times per shift. His 1:1 aides see the most outbursts than anyone else. I believe I know why. Evelio likes attention. He likes to be center stage. He loves to be praised. His 1:1 aides are not as close to him as his therapists. They do not work with him like the therapists do. He does not feel a bond with them. Also, they only really show him attention when he is doing something wrong. This, in my opinion, is teaching bad behavior. He has a purpose for doing everything that he does. I always tell them if he is doing something bad, tell him to stop in a calm tone-of-voice. If he starts thrashing around, ignore the behavior and he will eventually see that he is not getting any reaction. Then, when he does something good/right over exaggerate your praise. Say "YAY" and clap your hands and smile. He enjoys the reaction. That will teach him to behave well and do the right thing and people will show attention to you. Also, his state insurance coverage recently requested proof that he needed a 1:1 aide still. He was placed with another child and one aide. The result was disastrous. It only lasted a few hours, during which he attacked several children and became so distraught with separation anxiety that Keila found him in his room on his bed sobbing. It took her an hour to calm him down enough to take a nap. I am very upset that he went through this even just for a few hours. He is not ready, and in my opinion will not be ready to be taken off 1:1 assistance for a long time. He is much too dependant on the attention and has to be assisted with almost every daily task for this. I just hope that it hasn't set him back too far. Overall, his aggression has not improved much, and in some areas, has worsened.
Health and Appetite
The good - He is growing and not ill.
The bad - He hardly ever eats anything. He is an extremely picky eater and will go days without eating even if he is starving. If the food isn't something he loves, he will not eat it. No ifs, ands, or buts, it will not get touched. Example: He loves Trix yogurt but absolutely refuses Yoplait yogurt. One visitation day I got there at 5pm and Keila told me that aside from Skittles, Evelio had eaten 10 Cheerios all day long. This has resulted in quite a bit of weight loss although I will contribute some of his weight loss to growth spurt. They have given up on trying to get him to eat what he is served at the moment, because it would seriously threaten his health. They are not serving him junk food, but if he wants 3 extra bananas, he gets them. He is also being given vitamin supplements. They are trying various protein sources like shakes and Magic Cups (ice cream or pudding) but so far he doesn't like any of that. I suggested maybe stirring protein powder or something into his Trix yogurt. This has also resulted in his irregularity.
All-in-all, I believe he will not be ready to come home any time soon. Keila was telling me a few weeks ago that he might be coming home by the end of October, however, how he melted down after being taken off 1:1 assistance, I don't see that happening. (He can't be released if he is unable to function without 1:1 assistance :( ).
I miss him so much. He has grown so much also :(. Every time I see him he looks older. I'm just so ready to bring him home.
April 2012
July 2012 (no booster seat)
Thursday, June 28, 2012
A Mother's Rage: Reaction to Ignorant People
I have previously stated that I have set up a YouTube channel in my son's name. The purpose is to promote awareness, share part of our lives, and to let other families dealing with Autism that they are not alone.
If you would like to view it the address is www.youtube.com/eveliosautism .
I have never received negative comments on this channel of any kind.
Until the other day. I logged in just to check on the channel because I hadn't checked it in a few weeks. I noticed there was a "new comments" notification. I clicked on it. It was a comment on the video titled "Evelio's Autism 5.25.12 Playing At McDonalds". The comment was:
"Throw that retard in the deep fryer!!"
My first reaction was to just stare at the screen. I was completely speechless. Then I burst out crying. I was crying for two reasons
1) I was highly upset that anyone could even think something so cruel.
2) I was extremely (and still am) angry that someone had the nerve to say such a thing about anyone, but ESPECIALLY my child!
Naturally, I went to this person's profile. His/her screen name is "multisnootylives1". It is basically an anonymous profile. The stated age is 23. I did report he/she as a cyberbullying, however I am not sure what YouTube will do considering this wasn't harrassment. He/She said one thing and that was it. However, the nature of what was said is horrible.
I am absolutely disgusted by this comment. I do not understand what makes people say or think this kind of thing about anyone. I am even more angry that I have no way of retaliating against this person. People say to move on, keep your head up, and your above them.
EFF that!
I don't want to be above them. I want to yell and scream and shout at that ignorant S.O.B. I want to let them know how cowardly he/she is to hide behind an anonymous profile! I know damn well I and above he or she, but that doesn't mean I don't wish I had the power to tell them where to stick it!
I am sure as he grows, we probably will encounter more and more bullying and terrible comments. Small children are bound to notice he is different and will probably voice this because they won't know any better. But once those children get to be a certain age, they should know better than to make fun of a special needs child.
I am sure most parents would feel the same if they were in my situation. I am thankful for one thing:
Evelio has no idea what it means.
And I hope he NEVER grasps what is being said. The kind of emotional damage bullying that this can cause is almost always irrereversible. . .
If you would like to view it the address is www.youtube.com/eveliosautism .
I have never received negative comments on this channel of any kind.
Until the other day. I logged in just to check on the channel because I hadn't checked it in a few weeks. I noticed there was a "new comments" notification. I clicked on it. It was a comment on the video titled "Evelio's Autism 5.25.12 Playing At McDonalds". The comment was:
"Throw that retard in the deep fryer!!"
My first reaction was to just stare at the screen. I was completely speechless. Then I burst out crying. I was crying for two reasons
1) I was highly upset that anyone could even think something so cruel.
2) I was extremely (and still am) angry that someone had the nerve to say such a thing about anyone, but ESPECIALLY my child!
Naturally, I went to this person's profile. His/her screen name is "multisnootylives1". It is basically an anonymous profile. The stated age is 23. I did report he/she as a cyberbullying, however I am not sure what YouTube will do considering this wasn't harrassment. He/She said one thing and that was it. However, the nature of what was said is horrible.
I am absolutely disgusted by this comment. I do not understand what makes people say or think this kind of thing about anyone. I am even more angry that I have no way of retaliating against this person. People say to move on, keep your head up, and your above them.
EFF that!
I don't want to be above them. I want to yell and scream and shout at that ignorant S.O.B. I want to let them know how cowardly he/she is to hide behind an anonymous profile! I know damn well I and above he or she, but that doesn't mean I don't wish I had the power to tell them where to stick it!
I am sure as he grows, we probably will encounter more and more bullying and terrible comments. Small children are bound to notice he is different and will probably voice this because they won't know any better. But once those children get to be a certain age, they should know better than to make fun of a special needs child.
I am sure most parents would feel the same if they were in my situation. I am thankful for one thing:
Evelio has no idea what it means.
And I hope he NEVER grasps what is being said. The kind of emotional damage bullying that this can cause is almost always irrereversible. . .
Monday, June 11, 2012
The New Approach: Evelio's Re-Evaluation
At our family therapy session on June 8th, Evelio's therapist told us that he had finally gotten in to see the head ABA therapist (after being at the school for a month and a half!) and that she (Dr. Chandler) had totally changed his care plan.
Keila showed us the behavioral notes for Evelio for the past 2 weeks and he was having 12+ aggressions on day shift and evenings and around 1-3 on overnights. :(. . . .
As I said, Dr. Chandler re-evaluated Evelio. She sat through all his class time and observed him at leisure activities also. She concluded that his aggressive outbursts were mainly due to him not understanding what is going on. She said that they were trying teach him things well beyond his level of comprehension and it was stressing him out which led to frustration and violent outbursts. She estimated his functioning level at only 9 months. When I heard that my eyes filled with tears. When he was evaluated in June 2010, when he was 2 and a half years old, the Child Study Center at OKC children's hospital estimated his functioning age at between 8 months and 13 months in various areas. 8 months was the estimation for expressive and receptive language. And now, a full 2 years later, with therapy and school implemented during that time, he has regressed in most areas to 9 months! So, Dr. Chandler decided to changed their approach.
- Stop Potty-Training
At first I didn't like that. I want him to use the toilet. However, keeping in mind that his mental age is only 9 months, we have to think of him as being a 9 month old baby instead of looking at the monster almost 5 year old boy that he is. Now it is impractical to teach a 9 month old baby how to use the toilet, correct? Now I see why they want to stop. Evelio is seriously delayed in more important areas that we should be worrying about right now. Looking at it that way, potty-training in my opinion can be put on the back-burner. Now, Evelio has NO problem peeing in the toilet. He does not know when he has to pee, but he knows when he is in front of the toilet, that he should try to pee. He has memorized the routine of pulling his pants down and standing to pee, flushing the toilet, and pulling his pants up. Even when he doesn't need to pee, he still pushes and tries to pee. If you try to sit him on the toilet, he freaks out. So they are still going to take him to the toilet every hour so that he doesn't forget the routine. But that is what we need to bear in mind. He is not actually potty-trained in #1 because he doesn't know when he has to go, he has only memorized the routine of what is supposed to be done when he sees a toilet. There is a big difference.
- Work on Cooperation and Compliance
In order to teach Evelio anything, they need him to cooperate and comply with tasks. Evelio can barely sit through 1-2 minutes of anything before becoming frustrated and restless. Therefore, they are going to stop trying to teach him any new academic skills at the moment. They are going to set him very short assignments (lasting a maximum of 5 minutes). He will have his assignment and a short playtime immediately after and then back to another assignment. This will teach him the concept of "if I do this, after I can do what I want". Ultimately, this will serve as his motivator for completing tasks. Also, they plan on rewarding him for EVERY good thing that he does. Meaning, when they tell him "Pick that block up" and he does that, BAM he gets a Skittle. Then they say, "Put the block in this bucket," and he does it, he gets another Skittle. This will make him more inclined to follow directions. Once he grasps that, they will only give him a Skittle for every 3 things he does right, and so on and so forth.
Now, after he starts cooperating and complying, they will start increasing the time of assignments and decreasing the playtime following, until his assignments go from one to another with no playtime. Then, after he is cooperating with that, they will start increasing the level of difficulty on the assignments very gradually.
This is going to take a LONG time. They told me to take the small achievements as huge ones. That's something they don't need to tell me. I have been doing that for 2 years already. I take nothing for granted when it comes to what Evelio can do and what he knows. I have mixed feelings on this session. I feel very happy that they finally know how they are going to approach him and help him. I am happy that they do believe he can be helped and taught. But, also I feel very crushed at the fact that he's only at a 9 month level. Him regressing even after 2 years of therapy and school makes me think that maybe nothing will help. I try to steer myself away from those thoughts. This is definitely not the life I wanted for my son. I can only hope that through the school staff and therapists and my efforts and with time, he can make progress. . . and not regress. . .
That's all I have. . . :(
Keila showed us the behavioral notes for Evelio for the past 2 weeks and he was having 12+ aggressions on day shift and evenings and around 1-3 on overnights. :(. . . .
As I said, Dr. Chandler re-evaluated Evelio. She sat through all his class time and observed him at leisure activities also. She concluded that his aggressive outbursts were mainly due to him not understanding what is going on. She said that they were trying teach him things well beyond his level of comprehension and it was stressing him out which led to frustration and violent outbursts. She estimated his functioning level at only 9 months. When I heard that my eyes filled with tears. When he was evaluated in June 2010, when he was 2 and a half years old, the Child Study Center at OKC children's hospital estimated his functioning age at between 8 months and 13 months in various areas. 8 months was the estimation for expressive and receptive language. And now, a full 2 years later, with therapy and school implemented during that time, he has regressed in most areas to 9 months! So, Dr. Chandler decided to changed their approach.
- Stop Potty-Training
At first I didn't like that. I want him to use the toilet. However, keeping in mind that his mental age is only 9 months, we have to think of him as being a 9 month old baby instead of looking at the monster almost 5 year old boy that he is. Now it is impractical to teach a 9 month old baby how to use the toilet, correct? Now I see why they want to stop. Evelio is seriously delayed in more important areas that we should be worrying about right now. Looking at it that way, potty-training in my opinion can be put on the back-burner. Now, Evelio has NO problem peeing in the toilet. He does not know when he has to pee, but he knows when he is in front of the toilet, that he should try to pee. He has memorized the routine of pulling his pants down and standing to pee, flushing the toilet, and pulling his pants up. Even when he doesn't need to pee, he still pushes and tries to pee. If you try to sit him on the toilet, he freaks out. So they are still going to take him to the toilet every hour so that he doesn't forget the routine. But that is what we need to bear in mind. He is not actually potty-trained in #1 because he doesn't know when he has to go, he has only memorized the routine of what is supposed to be done when he sees a toilet. There is a big difference.
- Work on Cooperation and Compliance
In order to teach Evelio anything, they need him to cooperate and comply with tasks. Evelio can barely sit through 1-2 minutes of anything before becoming frustrated and restless. Therefore, they are going to stop trying to teach him any new academic skills at the moment. They are going to set him very short assignments (lasting a maximum of 5 minutes). He will have his assignment and a short playtime immediately after and then back to another assignment. This will teach him the concept of "if I do this, after I can do what I want". Ultimately, this will serve as his motivator for completing tasks. Also, they plan on rewarding him for EVERY good thing that he does. Meaning, when they tell him "Pick that block up" and he does that, BAM he gets a Skittle. Then they say, "Put the block in this bucket," and he does it, he gets another Skittle. This will make him more inclined to follow directions. Once he grasps that, they will only give him a Skittle for every 3 things he does right, and so on and so forth.
Now, after he starts cooperating and complying, they will start increasing the time of assignments and decreasing the playtime following, until his assignments go from one to another with no playtime. Then, after he is cooperating with that, they will start increasing the level of difficulty on the assignments very gradually.
This is going to take a LONG time. They told me to take the small achievements as huge ones. That's something they don't need to tell me. I have been doing that for 2 years already. I take nothing for granted when it comes to what Evelio can do and what he knows. I have mixed feelings on this session. I feel very happy that they finally know how they are going to approach him and help him. I am happy that they do believe he can be helped and taught. But, also I feel very crushed at the fact that he's only at a 9 month level. Him regressing even after 2 years of therapy and school makes me think that maybe nothing will help. I try to steer myself away from those thoughts. This is definitely not the life I wanted for my son. I can only hope that through the school staff and therapists and my efforts and with time, he can make progress. . . and not regress. . .
That's all I have. . . :(
Wednesday, June 6, 2012
My End of the Phone
Just a reminder, Evelio has now been at his inpatient facility for one month and one week.
He calls me every night. Really, his 1:1 aide calls me and hands him the phone. Now, Evelio is pre-verbal. I use pre-verbal because he makes noises so he is not mute but he doesn't speak English words, or any language for that matter. He's created his own language and honestly I wish he could teach it to me.
Anyhow, when he calls me, there are a few different types of "conversations" we have. Now, they all last around the same time frame. Usually from 10 seconds to 2 minutes (rarely). Evelio doesn't know how to use the phone, but I have asked the therapist to try and work with him an hopefully she can teach him the concept of it.... Anyway, back to the type of phone calls.
• HEAVY BREATHER
This is the type of phone call where, no matter what is said on my end, all I hear is breathing. And not just normal breathing, I'm talking HEAVY loud breathing. I get this type of phone call a lot. But hey I am not complaining. It always excellent to know your child has a healthy set of lungs.
• 10 SECOND QUICKIE
Our conversation will go something like this: Me - "Hi baby, I love you". Evelio - "ahhhh ung". And then the aide comes back on and says that he has handed the phone back to her and has run off. I guess that's his way of saying "ok mom you heard me and now I have to get back to more pressing matters like my bowl of popcorn might get stolen by some kid and I'll have to go to time away for kicking some ass" in two short word variations. (phone calls are usually done during "movie and popcorn" time before bed)
• THE BLABBER
This is my favorite type of phone call. This is where as soon as Evelio gets the phone he's just giggling and babbling away and I can't even get a word in. I have time to say "hi" and that's it. All I hear on the line is "ahhhh tee-tah eeeeee dai-yah ung ti ti ti" giggling madly "eeeee yah eee yah dai-ya eee" and some more maniac laughing. That kind of phone call always makes my day.
• TEAR JERKER
Pretty self explanatory. This is the phone call that is filled with tears from his end, that leads to tears from my end. Sometimes his crying sounds heartbroken, sometimes he sounds more like he's grumpy and whining. Either way I can tell that my baby is unhappy and it breaks my heart.
No matter what type of phone call I get, I look forward to my phone ringing every night so Evelio can hear my voice.
He calls me every night. Really, his 1:1 aide calls me and hands him the phone. Now, Evelio is pre-verbal. I use pre-verbal because he makes noises so he is not mute but he doesn't speak English words, or any language for that matter. He's created his own language and honestly I wish he could teach it to me.
Anyhow, when he calls me, there are a few different types of "conversations" we have. Now, they all last around the same time frame. Usually from 10 seconds to 2 minutes (rarely). Evelio doesn't know how to use the phone, but I have asked the therapist to try and work with him an hopefully she can teach him the concept of it.... Anyway, back to the type of phone calls.
• HEAVY BREATHER
This is the type of phone call where, no matter what is said on my end, all I hear is breathing. And not just normal breathing, I'm talking HEAVY loud breathing. I get this type of phone call a lot. But hey I am not complaining. It always excellent to know your child has a healthy set of lungs.
• 10 SECOND QUICKIE
Our conversation will go something like this: Me - "Hi baby, I love you". Evelio - "ahhhh ung". And then the aide comes back on and says that he has handed the phone back to her and has run off. I guess that's his way of saying "ok mom you heard me and now I have to get back to more pressing matters like my bowl of popcorn might get stolen by some kid and I'll have to go to time away for kicking some ass" in two short word variations. (phone calls are usually done during "movie and popcorn" time before bed)
• THE BLABBER
This is my favorite type of phone call. This is where as soon as Evelio gets the phone he's just giggling and babbling away and I can't even get a word in. I have time to say "hi" and that's it. All I hear on the line is "ahhhh tee-tah eeeeee dai-yah ung ti ti ti" giggling madly "eeeee yah eee yah dai-ya eee" and some more maniac laughing. That kind of phone call always makes my day.
• TEAR JERKER
Pretty self explanatory. This is the phone call that is filled with tears from his end, that leads to tears from my end. Sometimes his crying sounds heartbroken, sometimes he sounds more like he's grumpy and whining. Either way I can tell that my baby is unhappy and it breaks my heart.
No matter what type of phone call I get, I look forward to my phone ringing every night so Evelio can hear my voice.
Monday, May 14, 2012
First Visitation May 11, 2012
So the very first visit we had with Evelio went GREAT! He was in a very happy mood the entire time! We got to the school right at 5pm. Our family therapy sessions are every other Friday from 5pm-6pm. The first therapy session, we just basically talked about goals and what types of things we would be doing once he adjusted well. I got to read through all the charting that has been done on him since he was admitted. I was sad to see so many documentation notes on aggressive and violent behavior outbursts, but happy to see that the behavior wasn't major.
When his aide brought him out of his unit and I saw him, I immediately felt the urge to cry. He looked at me and gave me a hug. Really, it seemed like he was shocked to see me. He moved very slowly. He gave me lots of kisses and held tight to my hand. He also gave Robert lots of hugs and kisses.
We walked around the courtyard of the facility while I talked with the therapist. After an hour of that, we had him all to ourselves. It was rainy outside but not very cold so for most of the visit we stayed outside. We took him to the basketball courts and Robert tried to teach him how to dribble the ball, but he wasn't interested. He just wanted to run and kick up water.
It started to drizzle a little more heavily so we took him into the cafeteria where a few other families were visiting their children. He played Angry Birds on Robert's phone for a little bit. He started signing that he was thirsty, so Robert got him a cup with juice. I was so proud to watch him drink the entire cup with out spilling a drop. (At home he was still drinking from a sippy cup).
Then, there was another little boy, who was higher functioning than Evelio, who was playing with a small remote control truck. Evelio started chasing it around the cafeteria. When the other little boy would stop the truck, Evelio would pick it up and throw it. We scolded him for it, but the other little boy was so nice and said, "No, it's okay. He just wants to play." He tried to keep it zooming around for Evelio's entertainment. He even tried to give the control to Evelio and teach him how to use it. But, Evelio just wanted to chase it. It was so nice to see him interacting with that other little boy. I wish I would have gotten a video of them.
The visit's end came way too soon for me :(. We walked Evelio back to his unit where they were popping some popcorn and about to settle the kids down for a movie. Evelio was fine until I tried to let go of his hand. He pulled my hand closer to his body and tried to pull me into the "living room" of his unit. I told him I had to go and pulled him into a hug and gave him a big kiss. When his aide took his hand he started crying and stomping his feet. At that point, I had started to cry so Robert put his arm around me and led me to the car.
All in all, it was a fantastic visit and I can't wait until the next one!
When his aide brought him out of his unit and I saw him, I immediately felt the urge to cry. He looked at me and gave me a hug. Really, it seemed like he was shocked to see me. He moved very slowly. He gave me lots of kisses and held tight to my hand. He also gave Robert lots of hugs and kisses.
We walked around the courtyard of the facility while I talked with the therapist. After an hour of that, we had him all to ourselves. It was rainy outside but not very cold so for most of the visit we stayed outside. We took him to the basketball courts and Robert tried to teach him how to dribble the ball, but he wasn't interested. He just wanted to run and kick up water.
It started to drizzle a little more heavily so we took him into the cafeteria where a few other families were visiting their children. He played Angry Birds on Robert's phone for a little bit. He started signing that he was thirsty, so Robert got him a cup with juice. I was so proud to watch him drink the entire cup with out spilling a drop. (At home he was still drinking from a sippy cup).
Then, there was another little boy, who was higher functioning than Evelio, who was playing with a small remote control truck. Evelio started chasing it around the cafeteria. When the other little boy would stop the truck, Evelio would pick it up and throw it. We scolded him for it, but the other little boy was so nice and said, "No, it's okay. He just wants to play." He tried to keep it zooming around for Evelio's entertainment. He even tried to give the control to Evelio and teach him how to use it. But, Evelio just wanted to chase it. It was so nice to see him interacting with that other little boy. I wish I would have gotten a video of them.
The visit's end came way too soon for me :(. We walked Evelio back to his unit where they were popping some popcorn and about to settle the kids down for a movie. Evelio was fine until I tried to let go of his hand. He pulled my hand closer to his body and tried to pull me into the "living room" of his unit. I told him I had to go and pulled him into a hug and gave him a big kiss. When his aide took his hand he started crying and stomping his feet. At that point, I had started to cry so Robert put his arm around me and led me to the car.
All in all, it was a fantastic visit and I can't wait until the next one!
Tuesday, May 8, 2012
How to Deal
As of today, my Evelio has been gone for a week and 4 days. It seems impossible because it feels as if he has been gone for months.
How am I dealing?? . . . it depends.
When I am away from home, I am better, (usually). I laugh easier. I'm pretty sure it's because I can subconsciously pretend that he's with a sitter and I'll be seeing him when I get home. When I'm at work, I feel almost normal. I'm used to not seeing Evelio at all on weekends. However, this past weekend I did breakdown at work a little. My little man had called me and I just lost it momentarily.
Now, at home, it's a whole different story. I wake up in the morning, alone. I decide to get out of bed, usually around noon because I just can't stand laying there anymore. I walk into my living room. . . . complete silence. I eat a piece of toast. . . I have no one to cook for. I generally spend all day doing absolutely nothing. . . . alone. Last week was so brutal that I found myself excited that Saturday was arriving so that I could go to work. I don't cry all day. But, I'm not in a happy mood. It is torture to not hear "eeeeeee lalalala dai-yah eeeee" in the background all day. And to not hear the stomping of feet as Evelio runs down the hall. The silence is so unnatural and unnerving to me. I hate it.
One night last week I went into Evelio's room, got into his bed, covered up with his Spiderman blanket, and snuggled with his favorite talking frog toy. And I cried. . . .and cried. . . .and cried for hours. I don't even know how long I was in there. I just cried. Then, I took his blanket and frog and laid on my couch in the living room and fell asleep.
I don't know how to deal with my son living somewhere else. I just tell myself every minute of everyday that I am giving him the best I could possibly give him. I try to stay focused on his future and what it could become after this program he is in is complete. But, honestly, that does not give me direction as to how to cope with his absence. I know with all my heart that this is what he needs for him, but for me? I feel as if I am being forced to smile when people ask me how I am. Like I HAVE to be okay because I'm doing the right thing. Somehow the idea of making the right decision is supposed to automatically ensure that I will be fine all the time.
Well. . .I'm not fine all the time, but I try to be. Or, rather, I try to make people think that I'm fine all the time. Because hearing someone reassure me does nothing to heal my pain. It does nothing to help the hurt that my heart feels. When someone wraps their arm around me, I feel even more weak and often cry harder. I just want to be okay. I just want to fast forward through this year and have my baby back home with me. . . . . . . . . .
How am I dealing?? . . . it depends.
When I am away from home, I am better, (usually). I laugh easier. I'm pretty sure it's because I can subconsciously pretend that he's with a sitter and I'll be seeing him when I get home. When I'm at work, I feel almost normal. I'm used to not seeing Evelio at all on weekends. However, this past weekend I did breakdown at work a little. My little man had called me and I just lost it momentarily.
Now, at home, it's a whole different story. I wake up in the morning, alone. I decide to get out of bed, usually around noon because I just can't stand laying there anymore. I walk into my living room. . . . complete silence. I eat a piece of toast. . . I have no one to cook for. I generally spend all day doing absolutely nothing. . . . alone. Last week was so brutal that I found myself excited that Saturday was arriving so that I could go to work. I don't cry all day. But, I'm not in a happy mood. It is torture to not hear "eeeeeee lalalala dai-yah eeeee" in the background all day. And to not hear the stomping of feet as Evelio runs down the hall. The silence is so unnatural and unnerving to me. I hate it.
One night last week I went into Evelio's room, got into his bed, covered up with his Spiderman blanket, and snuggled with his favorite talking frog toy. And I cried. . . .and cried. . . .and cried for hours. I don't even know how long I was in there. I just cried. Then, I took his blanket and frog and laid on my couch in the living room and fell asleep.
I don't know how to deal with my son living somewhere else. I just tell myself every minute of everyday that I am giving him the best I could possibly give him. I try to stay focused on his future and what it could become after this program he is in is complete. But, honestly, that does not give me direction as to how to cope with his absence. I know with all my heart that this is what he needs for him, but for me? I feel as if I am being forced to smile when people ask me how I am. Like I HAVE to be okay because I'm doing the right thing. Somehow the idea of making the right decision is supposed to automatically ensure that I will be fine all the time.
Well. . .I'm not fine all the time, but I try to be. Or, rather, I try to make people think that I'm fine all the time. Because hearing someone reassure me does nothing to heal my pain. It does nothing to help the hurt that my heart feels. When someone wraps their arm around me, I feel even more weak and often cry harder. I just want to be okay. I just want to fast forward through this year and have my baby back home with me. . . . . . . . . .
Wednesday, April 25, 2012
My Decision to Send Evelio to a Residential School
Well, there is a residential school in Oklahoma City for Autistic kids. There is a set of criteria each potential student has to meet.
Now, some people have supported this decision and others have criticized me as well as my motives for it.
Believe me, this was an EXTREMELY difficult decision for me to make; it's still tearing me apart and I want to change my mind.
First of all, my job as his parent is to do everything I can to make sure Evelio receives every service he can. Let's face it, if there is no intervention, we will not see any progress. I have seen 2 years of services offered here in Duncan, and I can say that the services he is receiving here are not enough to help him. They are wonderful services, don't get me wrong. I absolutely love his teacher and his therapists do everything they can I'm sure. However, after receiving the same services for 2 years, he is still functioning very low and is still extremely delayed.
Second of all, my worst fear is that he'll be 18 and still be on this low-functioning and aggressive level. He is very strong already, and I can only imagine the things he could do at 10 much less at 18. I feel that he needs the inpatient treatment now, voluntarily, rather than later when I would be forced to institutionalize him because he would be out of control.
I absolutely HATE the fact that he will be living 2 hours away from me. I hate the fact that I'll only get to visit him once a week for an hour and a half. I hate the fact that I can't give him what he needs myself.
How selfish would I be to keep him home and make him miss out on this outstanding opportunity to better his life just because I want him close to me. He loves me and I know that he'll need to do some major adjusting within himself once he is there, but I know that I would be in the wrong not to try it for my own selfish reasons.
Now, some people might think that I have alterior motives for sending him. They may think, 'oh she just wants to get rid of him so she can do whatever she wants.' That's fine if people want to think that, but believe me I have lived for my son so long I have forgotten how to think just for myself. The thought of doing whatever whenever is not appealing to me. I have lived the last 5 years of my life for my son and with him absent from my home I know I am not going to want to do anything. I cry just thinking of the drive on Friday.
I know I don't have to explain anything to anybody because I am the one who knows what's best for my son. I posted this mainly for me to justify it to myself because like I said, there's still a war raging inside my head.
Hopefully this is just what Evelio needs, and after his term there, I'll see a whole new child.
- A diagnosis of Autism
- IQ of 50 or lower
- Show the need for intense therapy in an inpatient setting
- Demonstrates self-injurious behavior
- Is very aggressive and/or violent and is a danger to others
Now, some people have supported this decision and others have criticized me as well as my motives for it.
Believe me, this was an EXTREMELY difficult decision for me to make; it's still tearing me apart and I want to change my mind.
First of all, my job as his parent is to do everything I can to make sure Evelio receives every service he can. Let's face it, if there is no intervention, we will not see any progress. I have seen 2 years of services offered here in Duncan, and I can say that the services he is receiving here are not enough to help him. They are wonderful services, don't get me wrong. I absolutely love his teacher and his therapists do everything they can I'm sure. However, after receiving the same services for 2 years, he is still functioning very low and is still extremely delayed.
Second of all, my worst fear is that he'll be 18 and still be on this low-functioning and aggressive level. He is very strong already, and I can only imagine the things he could do at 10 much less at 18. I feel that he needs the inpatient treatment now, voluntarily, rather than later when I would be forced to institutionalize him because he would be out of control.
I absolutely HATE the fact that he will be living 2 hours away from me. I hate the fact that I'll only get to visit him once a week for an hour and a half. I hate the fact that I can't give him what he needs myself.
How selfish would I be to keep him home and make him miss out on this outstanding opportunity to better his life just because I want him close to me. He loves me and I know that he'll need to do some major adjusting within himself once he is there, but I know that I would be in the wrong not to try it for my own selfish reasons.
Now, some people might think that I have alterior motives for sending him. They may think, 'oh she just wants to get rid of him so she can do whatever she wants.' That's fine if people want to think that, but believe me I have lived for my son so long I have forgotten how to think just for myself. The thought of doing whatever whenever is not appealing to me. I have lived the last 5 years of my life for my son and with him absent from my home I know I am not going to want to do anything. I cry just thinking of the drive on Friday.
I know I don't have to explain anything to anybody because I am the one who knows what's best for my son. I posted this mainly for me to justify it to myself because like I said, there's still a war raging inside my head.
Hopefully this is just what Evelio needs, and after his term there, I'll see a whole new child.
Monday, April 9, 2012
School. . .
So, today, Evelio's teacher called me and we talked for about an hour. The subject: Evelio's placement in the school district for next school year.
The program he's in now, is called Early Childhood (like Pre-K). It is only for children with special needs. He has 3 other boys in his class and there are two teachers. He goes Monday-Thursday from 12:30pm-3:00pm.
There is another program that is available for him next year. It's at a different building. It's an all day program, Monday-Friday. He would mainly be in a classroom with other special needs kids, but he would be mainstreamed for certain classes, like P.E., Recess, Music, also for lunch.
I have the option of keeping him in the same program he is in now, or I could put him at the other school. I want him to have more than just two and a half hours a day. Now, my dilemma:
a) He would definitely not make it through an entire school day. He would end up in a terrible mood and he would get sent home.
b) The parts of the day where he would be mainstreamed would be disastrous. There is absolutely no way he could get through them without hurting someone. All of those children are already expected to know how and when to sit and to be patient with the process.
c) and MOST importantly, his teacher informed me of something I was not aware of. It is law that if Evelio were to attack someone, causing any type of injury, the family of said child, (or teacher or adult or ANYBODY) has the civil right to SUE ME. There is no way I can put him in a long day of school with that risk.
The program he is in now, I could still be sued if someone were to get hurt, however seeing as it is a very short day, he is less likely to become so agitated. But, even with the short day, he still scratches and bites, so I know, the longer the day, the more serious the injuries would become.
I know that Evelio is capable of learning, it is his BEHAVIOR that gets in the way. . . I am doing research on the kinds of resources he could possibly get in addition to school. I am so stressed out, I don't know what to do. I feel so lost and hopeless. I know I have to be strong for my baby, but it is so hard to focus on any twisted idea of something half-way positive, when most of what I see when it comes to his progress is negative. :(
The program he's in now, is called Early Childhood (like Pre-K). It is only for children with special needs. He has 3 other boys in his class and there are two teachers. He goes Monday-Thursday from 12:30pm-3:00pm.
There is another program that is available for him next year. It's at a different building. It's an all day program, Monday-Friday. He would mainly be in a classroom with other special needs kids, but he would be mainstreamed for certain classes, like P.E., Recess, Music, also for lunch.
I have the option of keeping him in the same program he is in now, or I could put him at the other school. I want him to have more than just two and a half hours a day. Now, my dilemma:
a) He would definitely not make it through an entire school day. He would end up in a terrible mood and he would get sent home.
b) The parts of the day where he would be mainstreamed would be disastrous. There is absolutely no way he could get through them without hurting someone. All of those children are already expected to know how and when to sit and to be patient with the process.
c) and MOST importantly, his teacher informed me of something I was not aware of. It is law that if Evelio were to attack someone, causing any type of injury, the family of said child, (or teacher or adult or ANYBODY) has the civil right to SUE ME. There is no way I can put him in a long day of school with that risk.
The program he is in now, I could still be sued if someone were to get hurt, however seeing as it is a very short day, he is less likely to become so agitated. But, even with the short day, he still scratches and bites, so I know, the longer the day, the more serious the injuries would become.
I know that Evelio is capable of learning, it is his BEHAVIOR that gets in the way. . . I am doing research on the kinds of resources he could possibly get in addition to school. I am so stressed out, I don't know what to do. I feel so lost and hopeless. I know I have to be strong for my baby, but it is so hard to focus on any twisted idea of something half-way positive, when most of what I see when it comes to his progress is negative. :(
Saturday, March 3, 2012
What I Wouldn't Change
I think a lot about what I would change about my son. However, there is so much that I love about him that I would never change. . .
Here's my list. . . .
His crazy laugh.
His kisses.
Here's my list. . . .
His beautiful smile.
Evelio has the most beautiful smile I have ever seen. His smile is literally ear to ear. I think it's so gorgeous because he doesn't just smile with his mouth, he smiles with his entire face. He has these cute little dimples; his eyes actually brighten a few shades; it seems as though his whole face is happy.
His crazy laugh.
When Evelio gets to laughing, he gets so excited it's like he can't control himself. He laughs the most when he gets the hiccups. Also, I do the brain sucker on his head and it cracks him up also. The times I love the most is when he's sitting on the couch, perfectly calm and then, all of a sudden, he bursts out in laughter. That makes me laugh, and he'll look at me and get excited that I'm laughing too, and usually that causes his laughter to escalate into hysterical giggles.
His kisses.
Evelio has his own way of giving kisses. He puckers his lips up (which makes him look like a little monkey) and puts both his hands on either side of my face and holds the kiss for a few seconds. Also he'll back up and gives a few more quick kisses. It's so cute how he loves to give kisses. Also, I find it amazing that he understands, "Give me a kiss" and "Dame beso (Spanish)".
How he plays with me.
Evelio likes for Robert and I to spin him around. Obviously, he loves anything that spins, and he absolutely loves to have himself spun. I take him by one arm and spin him one time around. That gets his hysterical laughter started and he'll grab my hands as if to ask me to do it again. He's so easy to satisfy with spinning.
Being his pillow.
When Evelio gets sleepy and we're at home, he comes to sit with me on the couch. He'll lean over and lay his head on my chest and wrap his arm around my stomach. He sighs and looks up at me with tired eyes and then lays his head back down. He could sleep for hours against me and I love it. I cherish the moments when he's so loving and it shows how close he is to me.
Holding his hand.
One thing I usually never have any trouble with is getting Evelio to hold my hand. As soon as we get out of the car somewhere he immediately grabs my hand. He also likes to hold my hand when he laying against me. Sometimes he likes to interlock our fingers. Also, he likes for me to tickle the inside of his hand. Sometimes he'll gently pinch the palm of my hand. I love this because it shows his affectionate side.
His knowledge.
There are a lot of things that Evelio doesn't understand. But, the things he does are so huge. He knows exactly how to use my iPhone, for example. The thing about Evelio is, if he likes to do something, he will learn it front to back. He can match shapes and numbers and colors and letters at school. More than likely this is because the matching activities are on the computer. He loves the computer. I see every tiny amount of progress as HUGE!
Flapping and jumping.
Evelio is constantly full of energy. Actually, he's either super energized, or passed out. When he gets excited, he flaps extremely fast and jumps and runs. And laughs. He just amuses me how happy he gets. His energy level is inspiring. Sometimes I copy him and he gets even more excited that I'm acting like him. I probably look like a complete idiot when we're in public and we're both dancing around like a scene straight out of Happy Feet.
There is a lot more I could think of, however, my laptop battery is dying so I'll leave the post here for now. One thing I know for sure is the good things about Evelio will ALWAYS outweigh the bad.
Tuesday, February 28, 2012
Did You Really Ask Me To Do That????
Okay, I seriously need to do some venting. Yesterday, February 27th, I had another hearing scheduled at that hell hole that is the Child Support office. If anyone has read my previous posts will know that the last time I went there, Evelio had to be put on medication.
Anyhow, a few days before this hearing, I had received a copy of genetic testing results, (FINALLY after two years of waiting for Evelio's dead beat sperm donor to do his part of the damned test) and of course, probability of paternity is 99.99%. Also, a reminder for the child support hearing was enclosed.
We, Evelio and I, got to the office at exactly 8:50 a.m. The hearing was scheduled for 9:00 a.m., but they tell everyone that. When you arrive you have to sign in and wait for ages to have your name called. Evelio's father, Juan, was already there waiting. There were so many people there already that there were only 2 vacant seats. As soon as we walked through the door, Evelio started screaming and stomping his feet. There were WAY too many people in that small space for him to handle. I dragged him to the receptionist desk and signed in. Juan didn't say anything to us. We sat down and I tried to distract Evelio from his surroundings with my iPhone. Normally, it really soothes him. He played a few games for maybe 2 minutes and then started screaming and pinching me. I noticed that Juan was staring at me as if to ask "WTF is his deal?" Everyone else kept sighing so I decided to try what I had done previously, which was to take him outside. Naturally, he was still distraught outside, not wanting to sit down or stop screaming. I kept him outside for about half an hour, but it was way too cold to keep him out. I took him back inside where the screaming grew louder and he started to hit me in the face, scratch himself, and bang his head into my chest. Juan got up and told me to sit in his chair because there were no other free places. He moved quite a ways away from us. I was thinking that he was probably embarrassed at the way Evelio was behaving. Then, to my relief, a lady opened the door to call someone back and called for me to come to her. I thought it was finally our turn. It wasn't.
Anyhow, a few days before this hearing, I had received a copy of genetic testing results, (FINALLY after two years of waiting for Evelio's dead beat sperm donor to do his part of the damned test) and of course, probability of paternity is 99.99%. Also, a reminder for the child support hearing was enclosed.
We, Evelio and I, got to the office at exactly 8:50 a.m. The hearing was scheduled for 9:00 a.m., but they tell everyone that. When you arrive you have to sign in and wait for ages to have your name called. Evelio's father, Juan, was already there waiting. There were so many people there already that there were only 2 vacant seats. As soon as we walked through the door, Evelio started screaming and stomping his feet. There were WAY too many people in that small space for him to handle. I dragged him to the receptionist desk and signed in. Juan didn't say anything to us. We sat down and I tried to distract Evelio from his surroundings with my iPhone. Normally, it really soothes him. He played a few games for maybe 2 minutes and then started screaming and pinching me. I noticed that Juan was staring at me as if to ask "WTF is his deal?" Everyone else kept sighing so I decided to try what I had done previously, which was to take him outside. Naturally, he was still distraught outside, not wanting to sit down or stop screaming. I kept him outside for about half an hour, but it was way too cold to keep him out. I took him back inside where the screaming grew louder and he started to hit me in the face, scratch himself, and bang his head into my chest. Juan got up and told me to sit in his chair because there were no other free places. He moved quite a ways away from us. I was thinking that he was probably embarrassed at the way Evelio was behaving. Then, to my relief, a lady opened the door to call someone back and called for me to come to her. I thought it was finally our turn. It wasn't.
"You're going to have to take him out of this office. We are about to hold a hearing, and the judge is going to be mad if he can hear a kid screaming in the lobby. I'm sorry but you're going to have to wait outside and we'll come get you whenever we're ready."
I was so furious that I couldn't say anything right away. Then I said, "Look, he has Autism, I can't help the fact that he's screaming. There's too many people in here and it's driving him crazy." She just shook her head and said, "I'm sorry you're going to have to wait with him outside." I turned away with my eyes full of tears. I was humiliated for one. More so than that however, I couldn't believe that she really asked me to wait outside in the cold because the judge couldn't deal with background noises. Juan noticed me walking towards the door and asked me what happened. Without looking at him I said, "They're making me take Evelio out of here because he's disturbing them, so I have to make him wait in the cold."
Juan followed me outside and told me that I could sit Evelio in his car so that he wouldn't be freezing. I was grateful that he allowed that. Evelio was still upset, but the longer we were outside, the more calm he became. Juan and I talked about Evelio's behavior and I tried my best to explain everything to him.
We were called back into the office to attend our hearing. The minute we got inside the little office to do the decision-making Evelio completely lost control. I just kept apologizing to the lady that was going to be overseeing our discussion. She was much more understanding than the other woman. I picked Evelio up and a few minutes later he was asleep in my arms. We went through the proceedings without argument and ended up not even having to see the judge.
I just can't believe they actually had me removed from the waiting area because my son was having a meltdown. I was completely embarrassed, not at Evelio's behavior, but at having been treated like a child being sent to the Principal's office for rough-housing. I don't know if I could ever bite my tongue again like I did in there. . .
Monday, February 13, 2012
Don't Take Things for Granted
"Shut the EFF up!"
Now, all parents, (with NT or special needs kids), probably request silence at some point. Don't get me wrong, there are times when my son is making the craziest noises so loud that I can't think straight and I tell him to be quiet. But, there are some situations when I wish I could I had the opportunity to say shut up. I know that sounds confusing, so here's an example.
- "I came into this store for one reason, and I don't want to hear about what you want! So be quiet!"
I wish that my son could voice what he wanted. I don't care if he wanted everything that crossed our path. Nothing would give me more joy than for him to shout, "Mommy I want that toy, mommy I want those chips, mommy I want that shirt, or mommy I want those shoes."
I was talking to my sister one day on the phone and she was ranting about her youngest of two sons. Here's what she said,
"Oh my God, TJ is driving me crazy! He's just following me around saying 'Mommy, I love you. Hey Mommy what you doing' It's Mommy this and Mommy that and I wish he would just leave me alone and shut up!"
Now, I'm sure she wasn't thinking about who she was talking to. But in that moment I wanted to jump through the phone and slap her. I told her that she shouldn't complain to me of all people about that because I would be perfectly satisfied if my son could say even a variation of Mommy I Love You.
"My child is always wanting his/her friends to come over so they can wreck the house!"
I hear this from people at work or I overhear from other parents talking to each other. I understand that you don't want your house wrecked. I don't like my house to be wrecked either. I just wish that my son HAD friends to invite over. More-so that he WANTED to make friends that he could invite over. I would love for him to have friends over and show an interest in interacting with them. Instead, most kids are terrified of him once they see a meltdown. And when they try to approach him to play, he either ignores them and on a bad day, attacks them.
"Every time we go somewhere, he/she always screams he/she has to go pee every 5 minutes so I spend more time in the bathroom than wherever we're going!"
This one isn't hugely common, but I'm sure it's still said often. I wish my son could even acknowledge the urge to go to the bathroom. Thankfully, he knows when I take him and pull his pants down and stand him in front of the toilet that he should push to see if pee comes out, but he still doesn't know when he has to go. He just knows the routine of going to the bathroom. I never expected to still pack a diaper bag for trips lasting longer than an hour when he is four and a half years old.
"My kid's always drawing on every piece of paper he/she can find, and his/herself too!"
I don't want my son to color all over the walls or anything. However, I do wish that he had the fine motor skills to hold a writing utensil and also the know-how to put the tip down and enjoy the effect of it making marks on paper or himself even. He, unfortunately, is not interested in even trying to make a mark. When I get him to hold a writing utensil, he wants to put it in his mouth, and if he can actually chew and swallow it, (i.e. crayon) he will!
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