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.
Tuesday, October 30, 2012
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.
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