So the very first visit we had with Evelio went GREAT! He was in a very happy mood the entire time! We got to the school right at 5pm. Our family therapy sessions are every other Friday from 5pm-6pm. The first therapy session, we just basically talked about goals and what types of things we would be doing once he adjusted well. I got to read through all the charting that has been done on him since he was admitted. I was sad to see so many documentation notes on aggressive and violent behavior outbursts, but happy to see that the behavior wasn't major.
When his aide brought him out of his unit and I saw him, I immediately felt the urge to cry. He looked at me and gave me a hug. Really, it seemed like he was shocked to see me. He moved very slowly. He gave me lots of kisses and held tight to my hand. He also gave Robert lots of hugs and kisses.
We walked around the courtyard of the facility while I talked with the therapist. After an hour of that, we had him all to ourselves. It was rainy outside but not very cold so for most of the visit we stayed outside. We took him to the basketball courts and Robert tried to teach him how to dribble the ball, but he wasn't interested. He just wanted to run and kick up water.
It started to drizzle a little more heavily so we took him into the cafeteria where a few other families were visiting their children. He played Angry Birds on Robert's phone for a little bit. He started signing that he was thirsty, so Robert got him a cup with juice. I was so proud to watch him drink the entire cup with out spilling a drop. (At home he was still drinking from a sippy cup).
Then, there was another little boy, who was higher functioning than Evelio, who was playing with a small remote control truck. Evelio started chasing it around the cafeteria. When the other little boy would stop the truck, Evelio would pick it up and throw it. We scolded him for it, but the other little boy was so nice and said, "No, it's okay. He just wants to play." He tried to keep it zooming around for Evelio's entertainment. He even tried to give the control to Evelio and teach him how to use it. But, Evelio just wanted to chase it. It was so nice to see him interacting with that other little boy. I wish I would have gotten a video of them.
The visit's end came way too soon for me :(. We walked Evelio back to his unit where they were popping some popcorn and about to settle the kids down for a movie. Evelio was fine until I tried to let go of his hand. He pulled my hand closer to his body and tried to pull me into the "living room" of his unit. I told him I had to go and pulled him into a hug and gave him a big kiss. When his aide took his hand he started crying and stomping his feet. At that point, I had started to cry so Robert put his arm around me and led me to the car.
All in all, it was a fantastic visit and I can't wait until the next one!
Monday, May 14, 2012
Tuesday, May 8, 2012
How to Deal
As of today, my Evelio has been gone for a week and 4 days. It seems impossible because it feels as if he has been gone for months.
How am I dealing?? . . . it depends.
When I am away from home, I am better, (usually). I laugh easier. I'm pretty sure it's because I can subconsciously pretend that he's with a sitter and I'll be seeing him when I get home. When I'm at work, I feel almost normal. I'm used to not seeing Evelio at all on weekends. However, this past weekend I did breakdown at work a little. My little man had called me and I just lost it momentarily.
Now, at home, it's a whole different story. I wake up in the morning, alone. I decide to get out of bed, usually around noon because I just can't stand laying there anymore. I walk into my living room. . . . complete silence. I eat a piece of toast. . . I have no one to cook for. I generally spend all day doing absolutely nothing. . . . alone. Last week was so brutal that I found myself excited that Saturday was arriving so that I could go to work. I don't cry all day. But, I'm not in a happy mood. It is torture to not hear "eeeeeee lalalala dai-yah eeeee" in the background all day. And to not hear the stomping of feet as Evelio runs down the hall. The silence is so unnatural and unnerving to me. I hate it.
One night last week I went into Evelio's room, got into his bed, covered up with his Spiderman blanket, and snuggled with his favorite talking frog toy. And I cried. . . .and cried. . . .and cried for hours. I don't even know how long I was in there. I just cried. Then, I took his blanket and frog and laid on my couch in the living room and fell asleep.
I don't know how to deal with my son living somewhere else. I just tell myself every minute of everyday that I am giving him the best I could possibly give him. I try to stay focused on his future and what it could become after this program he is in is complete. But, honestly, that does not give me direction as to how to cope with his absence. I know with all my heart that this is what he needs for him, but for me? I feel as if I am being forced to smile when people ask me how I am. Like I HAVE to be okay because I'm doing the right thing. Somehow the idea of making the right decision is supposed to automatically ensure that I will be fine all the time.
Well. . .I'm not fine all the time, but I try to be. Or, rather, I try to make people think that I'm fine all the time. Because hearing someone reassure me does nothing to heal my pain. It does nothing to help the hurt that my heart feels. When someone wraps their arm around me, I feel even more weak and often cry harder. I just want to be okay. I just want to fast forward through this year and have my baby back home with me. . . . . . . . . .
How am I dealing?? . . . it depends.
When I am away from home, I am better, (usually). I laugh easier. I'm pretty sure it's because I can subconsciously pretend that he's with a sitter and I'll be seeing him when I get home. When I'm at work, I feel almost normal. I'm used to not seeing Evelio at all on weekends. However, this past weekend I did breakdown at work a little. My little man had called me and I just lost it momentarily.
Now, at home, it's a whole different story. I wake up in the morning, alone. I decide to get out of bed, usually around noon because I just can't stand laying there anymore. I walk into my living room. . . . complete silence. I eat a piece of toast. . . I have no one to cook for. I generally spend all day doing absolutely nothing. . . . alone. Last week was so brutal that I found myself excited that Saturday was arriving so that I could go to work. I don't cry all day. But, I'm not in a happy mood. It is torture to not hear "eeeeeee lalalala dai-yah eeeee" in the background all day. And to not hear the stomping of feet as Evelio runs down the hall. The silence is so unnatural and unnerving to me. I hate it.
One night last week I went into Evelio's room, got into his bed, covered up with his Spiderman blanket, and snuggled with his favorite talking frog toy. And I cried. . . .and cried. . . .and cried for hours. I don't even know how long I was in there. I just cried. Then, I took his blanket and frog and laid on my couch in the living room and fell asleep.
I don't know how to deal with my son living somewhere else. I just tell myself every minute of everyday that I am giving him the best I could possibly give him. I try to stay focused on his future and what it could become after this program he is in is complete. But, honestly, that does not give me direction as to how to cope with his absence. I know with all my heart that this is what he needs for him, but for me? I feel as if I am being forced to smile when people ask me how I am. Like I HAVE to be okay because I'm doing the right thing. Somehow the idea of making the right decision is supposed to automatically ensure that I will be fine all the time.
Well. . .I'm not fine all the time, but I try to be. Or, rather, I try to make people think that I'm fine all the time. Because hearing someone reassure me does nothing to heal my pain. It does nothing to help the hurt that my heart feels. When someone wraps their arm around me, I feel even more weak and often cry harder. I just want to be okay. I just want to fast forward through this year and have my baby back home with me. . . . . . . . . .
Wednesday, April 25, 2012
My Decision to Send Evelio to a Residential School
Well, there is a residential school in Oklahoma City for Autistic kids. There is a set of criteria each potential student has to meet.
Now, some people have supported this decision and others have criticized me as well as my motives for it.
Believe me, this was an EXTREMELY difficult decision for me to make; it's still tearing me apart and I want to change my mind.
First of all, my job as his parent is to do everything I can to make sure Evelio receives every service he can. Let's face it, if there is no intervention, we will not see any progress. I have seen 2 years of services offered here in Duncan, and I can say that the services he is receiving here are not enough to help him. They are wonderful services, don't get me wrong. I absolutely love his teacher and his therapists do everything they can I'm sure. However, after receiving the same services for 2 years, he is still functioning very low and is still extremely delayed.
Second of all, my worst fear is that he'll be 18 and still be on this low-functioning and aggressive level. He is very strong already, and I can only imagine the things he could do at 10 much less at 18. I feel that he needs the inpatient treatment now, voluntarily, rather than later when I would be forced to institutionalize him because he would be out of control.
I absolutely HATE the fact that he will be living 2 hours away from me. I hate the fact that I'll only get to visit him once a week for an hour and a half. I hate the fact that I can't give him what he needs myself.
How selfish would I be to keep him home and make him miss out on this outstanding opportunity to better his life just because I want him close to me. He loves me and I know that he'll need to do some major adjusting within himself once he is there, but I know that I would be in the wrong not to try it for my own selfish reasons.
Now, some people might think that I have alterior motives for sending him. They may think, 'oh she just wants to get rid of him so she can do whatever she wants.' That's fine if people want to think that, but believe me I have lived for my son so long I have forgotten how to think just for myself. The thought of doing whatever whenever is not appealing to me. I have lived the last 5 years of my life for my son and with him absent from my home I know I am not going to want to do anything. I cry just thinking of the drive on Friday.
I know I don't have to explain anything to anybody because I am the one who knows what's best for my son. I posted this mainly for me to justify it to myself because like I said, there's still a war raging inside my head.
Hopefully this is just what Evelio needs, and after his term there, I'll see a whole new child.
- A diagnosis of Autism
- IQ of 50 or lower
- Show the need for intense therapy in an inpatient setting
- Demonstrates self-injurious behavior
- Is very aggressive and/or violent and is a danger to others
Now, some people have supported this decision and others have criticized me as well as my motives for it.
Believe me, this was an EXTREMELY difficult decision for me to make; it's still tearing me apart and I want to change my mind.
First of all, my job as his parent is to do everything I can to make sure Evelio receives every service he can. Let's face it, if there is no intervention, we will not see any progress. I have seen 2 years of services offered here in Duncan, and I can say that the services he is receiving here are not enough to help him. They are wonderful services, don't get me wrong. I absolutely love his teacher and his therapists do everything they can I'm sure. However, after receiving the same services for 2 years, he is still functioning very low and is still extremely delayed.
Second of all, my worst fear is that he'll be 18 and still be on this low-functioning and aggressive level. He is very strong already, and I can only imagine the things he could do at 10 much less at 18. I feel that he needs the inpatient treatment now, voluntarily, rather than later when I would be forced to institutionalize him because he would be out of control.
I absolutely HATE the fact that he will be living 2 hours away from me. I hate the fact that I'll only get to visit him once a week for an hour and a half. I hate the fact that I can't give him what he needs myself.
How selfish would I be to keep him home and make him miss out on this outstanding opportunity to better his life just because I want him close to me. He loves me and I know that he'll need to do some major adjusting within himself once he is there, but I know that I would be in the wrong not to try it for my own selfish reasons.
Now, some people might think that I have alterior motives for sending him. They may think, 'oh she just wants to get rid of him so she can do whatever she wants.' That's fine if people want to think that, but believe me I have lived for my son so long I have forgotten how to think just for myself. The thought of doing whatever whenever is not appealing to me. I have lived the last 5 years of my life for my son and with him absent from my home I know I am not going to want to do anything. I cry just thinking of the drive on Friday.
I know I don't have to explain anything to anybody because I am the one who knows what's best for my son. I posted this mainly for me to justify it to myself because like I said, there's still a war raging inside my head.
Hopefully this is just what Evelio needs, and after his term there, I'll see a whole new child.
Monday, April 9, 2012
School. . .
So, today, Evelio's teacher called me and we talked for about an hour. The subject: Evelio's placement in the school district for next school year.
The program he's in now, is called Early Childhood (like Pre-K). It is only for children with special needs. He has 3 other boys in his class and there are two teachers. He goes Monday-Thursday from 12:30pm-3:00pm.
There is another program that is available for him next year. It's at a different building. It's an all day program, Monday-Friday. He would mainly be in a classroom with other special needs kids, but he would be mainstreamed for certain classes, like P.E., Recess, Music, also for lunch.
I have the option of keeping him in the same program he is in now, or I could put him at the other school. I want him to have more than just two and a half hours a day. Now, my dilemma:
a) He would definitely not make it through an entire school day. He would end up in a terrible mood and he would get sent home.
b) The parts of the day where he would be mainstreamed would be disastrous. There is absolutely no way he could get through them without hurting someone. All of those children are already expected to know how and when to sit and to be patient with the process.
c) and MOST importantly, his teacher informed me of something I was not aware of. It is law that if Evelio were to attack someone, causing any type of injury, the family of said child, (or teacher or adult or ANYBODY) has the civil right to SUE ME. There is no way I can put him in a long day of school with that risk.
The program he is in now, I could still be sued if someone were to get hurt, however seeing as it is a very short day, he is less likely to become so agitated. But, even with the short day, he still scratches and bites, so I know, the longer the day, the more serious the injuries would become.
I know that Evelio is capable of learning, it is his BEHAVIOR that gets in the way. . . I am doing research on the kinds of resources he could possibly get in addition to school. I am so stressed out, I don't know what to do. I feel so lost and hopeless. I know I have to be strong for my baby, but it is so hard to focus on any twisted idea of something half-way positive, when most of what I see when it comes to his progress is negative. :(
The program he's in now, is called Early Childhood (like Pre-K). It is only for children with special needs. He has 3 other boys in his class and there are two teachers. He goes Monday-Thursday from 12:30pm-3:00pm.
There is another program that is available for him next year. It's at a different building. It's an all day program, Monday-Friday. He would mainly be in a classroom with other special needs kids, but he would be mainstreamed for certain classes, like P.E., Recess, Music, also for lunch.
I have the option of keeping him in the same program he is in now, or I could put him at the other school. I want him to have more than just two and a half hours a day. Now, my dilemma:
a) He would definitely not make it through an entire school day. He would end up in a terrible mood and he would get sent home.
b) The parts of the day where he would be mainstreamed would be disastrous. There is absolutely no way he could get through them without hurting someone. All of those children are already expected to know how and when to sit and to be patient with the process.
c) and MOST importantly, his teacher informed me of something I was not aware of. It is law that if Evelio were to attack someone, causing any type of injury, the family of said child, (or teacher or adult or ANYBODY) has the civil right to SUE ME. There is no way I can put him in a long day of school with that risk.
The program he is in now, I could still be sued if someone were to get hurt, however seeing as it is a very short day, he is less likely to become so agitated. But, even with the short day, he still scratches and bites, so I know, the longer the day, the more serious the injuries would become.
I know that Evelio is capable of learning, it is his BEHAVIOR that gets in the way. . . I am doing research on the kinds of resources he could possibly get in addition to school. I am so stressed out, I don't know what to do. I feel so lost and hopeless. I know I have to be strong for my baby, but it is so hard to focus on any twisted idea of something half-way positive, when most of what I see when it comes to his progress is negative. :(
Saturday, March 3, 2012
What I Wouldn't Change
I think a lot about what I would change about my son. However, there is so much that I love about him that I would never change. . .
Here's my list. . . .
His crazy laugh.
His kisses.
Here's my list. . . .
His beautiful smile.
Evelio has the most beautiful smile I have ever seen. His smile is literally ear to ear. I think it's so gorgeous because he doesn't just smile with his mouth, he smiles with his entire face. He has these cute little dimples; his eyes actually brighten a few shades; it seems as though his whole face is happy.
His crazy laugh.
When Evelio gets to laughing, he gets so excited it's like he can't control himself. He laughs the most when he gets the hiccups. Also, I do the brain sucker on his head and it cracks him up also. The times I love the most is when he's sitting on the couch, perfectly calm and then, all of a sudden, he bursts out in laughter. That makes me laugh, and he'll look at me and get excited that I'm laughing too, and usually that causes his laughter to escalate into hysterical giggles.
His kisses.
Evelio has his own way of giving kisses. He puckers his lips up (which makes him look like a little monkey) and puts both his hands on either side of my face and holds the kiss for a few seconds. Also he'll back up and gives a few more quick kisses. It's so cute how he loves to give kisses. Also, I find it amazing that he understands, "Give me a kiss" and "Dame beso (Spanish)".
How he plays with me.
Evelio likes for Robert and I to spin him around. Obviously, he loves anything that spins, and he absolutely loves to have himself spun. I take him by one arm and spin him one time around. That gets his hysterical laughter started and he'll grab my hands as if to ask me to do it again. He's so easy to satisfy with spinning.
Being his pillow.
When Evelio gets sleepy and we're at home, he comes to sit with me on the couch. He'll lean over and lay his head on my chest and wrap his arm around my stomach. He sighs and looks up at me with tired eyes and then lays his head back down. He could sleep for hours against me and I love it. I cherish the moments when he's so loving and it shows how close he is to me.
Holding his hand.
One thing I usually never have any trouble with is getting Evelio to hold my hand. As soon as we get out of the car somewhere he immediately grabs my hand. He also likes to hold my hand when he laying against me. Sometimes he likes to interlock our fingers. Also, he likes for me to tickle the inside of his hand. Sometimes he'll gently pinch the palm of my hand. I love this because it shows his affectionate side.
His knowledge.
There are a lot of things that Evelio doesn't understand. But, the things he does are so huge. He knows exactly how to use my iPhone, for example. The thing about Evelio is, if he likes to do something, he will learn it front to back. He can match shapes and numbers and colors and letters at school. More than likely this is because the matching activities are on the computer. He loves the computer. I see every tiny amount of progress as HUGE!
Flapping and jumping.
Evelio is constantly full of energy. Actually, he's either super energized, or passed out. When he gets excited, he flaps extremely fast and jumps and runs. And laughs. He just amuses me how happy he gets. His energy level is inspiring. Sometimes I copy him and he gets even more excited that I'm acting like him. I probably look like a complete idiot when we're in public and we're both dancing around like a scene straight out of Happy Feet.
There is a lot more I could think of, however, my laptop battery is dying so I'll leave the post here for now. One thing I know for sure is the good things about Evelio will ALWAYS outweigh the bad.
Tuesday, February 28, 2012
Did You Really Ask Me To Do That????
Okay, I seriously need to do some venting. Yesterday, February 27th, I had another hearing scheduled at that hell hole that is the Child Support office. If anyone has read my previous posts will know that the last time I went there, Evelio had to be put on medication.
Anyhow, a few days before this hearing, I had received a copy of genetic testing results, (FINALLY after two years of waiting for Evelio's dead beat sperm donor to do his part of the damned test) and of course, probability of paternity is 99.99%. Also, a reminder for the child support hearing was enclosed.
We, Evelio and I, got to the office at exactly 8:50 a.m. The hearing was scheduled for 9:00 a.m., but they tell everyone that. When you arrive you have to sign in and wait for ages to have your name called. Evelio's father, Juan, was already there waiting. There were so many people there already that there were only 2 vacant seats. As soon as we walked through the door, Evelio started screaming and stomping his feet. There were WAY too many people in that small space for him to handle. I dragged him to the receptionist desk and signed in. Juan didn't say anything to us. We sat down and I tried to distract Evelio from his surroundings with my iPhone. Normally, it really soothes him. He played a few games for maybe 2 minutes and then started screaming and pinching me. I noticed that Juan was staring at me as if to ask "WTF is his deal?" Everyone else kept sighing so I decided to try what I had done previously, which was to take him outside. Naturally, he was still distraught outside, not wanting to sit down or stop screaming. I kept him outside for about half an hour, but it was way too cold to keep him out. I took him back inside where the screaming grew louder and he started to hit me in the face, scratch himself, and bang his head into my chest. Juan got up and told me to sit in his chair because there were no other free places. He moved quite a ways away from us. I was thinking that he was probably embarrassed at the way Evelio was behaving. Then, to my relief, a lady opened the door to call someone back and called for me to come to her. I thought it was finally our turn. It wasn't.
Anyhow, a few days before this hearing, I had received a copy of genetic testing results, (FINALLY after two years of waiting for Evelio's dead beat sperm donor to do his part of the damned test) and of course, probability of paternity is 99.99%. Also, a reminder for the child support hearing was enclosed.
We, Evelio and I, got to the office at exactly 8:50 a.m. The hearing was scheduled for 9:00 a.m., but they tell everyone that. When you arrive you have to sign in and wait for ages to have your name called. Evelio's father, Juan, was already there waiting. There were so many people there already that there were only 2 vacant seats. As soon as we walked through the door, Evelio started screaming and stomping his feet. There were WAY too many people in that small space for him to handle. I dragged him to the receptionist desk and signed in. Juan didn't say anything to us. We sat down and I tried to distract Evelio from his surroundings with my iPhone. Normally, it really soothes him. He played a few games for maybe 2 minutes and then started screaming and pinching me. I noticed that Juan was staring at me as if to ask "WTF is his deal?" Everyone else kept sighing so I decided to try what I had done previously, which was to take him outside. Naturally, he was still distraught outside, not wanting to sit down or stop screaming. I kept him outside for about half an hour, but it was way too cold to keep him out. I took him back inside where the screaming grew louder and he started to hit me in the face, scratch himself, and bang his head into my chest. Juan got up and told me to sit in his chair because there were no other free places. He moved quite a ways away from us. I was thinking that he was probably embarrassed at the way Evelio was behaving. Then, to my relief, a lady opened the door to call someone back and called for me to come to her. I thought it was finally our turn. It wasn't.
"You're going to have to take him out of this office. We are about to hold a hearing, and the judge is going to be mad if he can hear a kid screaming in the lobby. I'm sorry but you're going to have to wait outside and we'll come get you whenever we're ready."
I was so furious that I couldn't say anything right away. Then I said, "Look, he has Autism, I can't help the fact that he's screaming. There's too many people in here and it's driving him crazy." She just shook her head and said, "I'm sorry you're going to have to wait with him outside." I turned away with my eyes full of tears. I was humiliated for one. More so than that however, I couldn't believe that she really asked me to wait outside in the cold because the judge couldn't deal with background noises. Juan noticed me walking towards the door and asked me what happened. Without looking at him I said, "They're making me take Evelio out of here because he's disturbing them, so I have to make him wait in the cold."
Juan followed me outside and told me that I could sit Evelio in his car so that he wouldn't be freezing. I was grateful that he allowed that. Evelio was still upset, but the longer we were outside, the more calm he became. Juan and I talked about Evelio's behavior and I tried my best to explain everything to him.
We were called back into the office to attend our hearing. The minute we got inside the little office to do the decision-making Evelio completely lost control. I just kept apologizing to the lady that was going to be overseeing our discussion. She was much more understanding than the other woman. I picked Evelio up and a few minutes later he was asleep in my arms. We went through the proceedings without argument and ended up not even having to see the judge.
I just can't believe they actually had me removed from the waiting area because my son was having a meltdown. I was completely embarrassed, not at Evelio's behavior, but at having been treated like a child being sent to the Principal's office for rough-housing. I don't know if I could ever bite my tongue again like I did in there. . .
Monday, February 13, 2012
Don't Take Things for Granted
"Shut the EFF up!"
Now, all parents, (with NT or special needs kids), probably request silence at some point. Don't get me wrong, there are times when my son is making the craziest noises so loud that I can't think straight and I tell him to be quiet. But, there are some situations when I wish I could I had the opportunity to say shut up. I know that sounds confusing, so here's an example.
- "I came into this store for one reason, and I don't want to hear about what you want! So be quiet!"
I wish that my son could voice what he wanted. I don't care if he wanted everything that crossed our path. Nothing would give me more joy than for him to shout, "Mommy I want that toy, mommy I want those chips, mommy I want that shirt, or mommy I want those shoes."
I was talking to my sister one day on the phone and she was ranting about her youngest of two sons. Here's what she said,
"Oh my God, TJ is driving me crazy! He's just following me around saying 'Mommy, I love you. Hey Mommy what you doing' It's Mommy this and Mommy that and I wish he would just leave me alone and shut up!"
Now, I'm sure she wasn't thinking about who she was talking to. But in that moment I wanted to jump through the phone and slap her. I told her that she shouldn't complain to me of all people about that because I would be perfectly satisfied if my son could say even a variation of Mommy I Love You.
"My child is always wanting his/her friends to come over so they can wreck the house!"
I hear this from people at work or I overhear from other parents talking to each other. I understand that you don't want your house wrecked. I don't like my house to be wrecked either. I just wish that my son HAD friends to invite over. More-so that he WANTED to make friends that he could invite over. I would love for him to have friends over and show an interest in interacting with them. Instead, most kids are terrified of him once they see a meltdown. And when they try to approach him to play, he either ignores them and on a bad day, attacks them.
"Every time we go somewhere, he/she always screams he/she has to go pee every 5 minutes so I spend more time in the bathroom than wherever we're going!"
This one isn't hugely common, but I'm sure it's still said often. I wish my son could even acknowledge the urge to go to the bathroom. Thankfully, he knows when I take him and pull his pants down and stand him in front of the toilet that he should push to see if pee comes out, but he still doesn't know when he has to go. He just knows the routine of going to the bathroom. I never expected to still pack a diaper bag for trips lasting longer than an hour when he is four and a half years old.
"My kid's always drawing on every piece of paper he/she can find, and his/herself too!"
I don't want my son to color all over the walls or anything. However, I do wish that he had the fine motor skills to hold a writing utensil and also the know-how to put the tip down and enjoy the effect of it making marks on paper or himself even. He, unfortunately, is not interested in even trying to make a mark. When I get him to hold a writing utensil, he wants to put it in his mouth, and if he can actually chew and swallow it, (i.e. crayon) he will!
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