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!
Thursday, September 27, 2012
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. . . :(
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