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.

• 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

Evelio meets all the criteria. He got accepted and fortunately his medicaid covers it. He will be admitted on Friday, April 27th.

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.

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. :(

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 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!

http://youtu.be/LetlyqOb92A

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.

http://youtu.be/HVrzPP7NUgY

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.

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.

"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. . .

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!

3 Solid Days of Meltdown

So, for the past 3 days, Evelio has been screaming shrilly for hours at a time, stomping, hitting himself, and then he bursts out crying with lots of tears as if his heart is broken. . .
Then. . . it starts all over again.


I felt like I was going to go crazy the first day and part of the second day. I couldn't figure out what was wrong. I blamed the medicine. He has been out of Risperdal for 2 days now. Risperdal makes him a little overemotional at normal rates, but now that he hasn't had any, I figured it's 100x's worse. I've called the pharmacy and there are no more refills, and they haven't heard back from the doctor. I called the doctor's office. . .His psychiatrist wants to see him before she refills it. That's all fine and dandy. It's just that she doesn't have an appointment open until Feb 10th! There is absolutely NO WAY he can go that long without medicine. Firstly, and most importantly, it is dangerous to his health to go without a medicine that his body has been used to taking for 2 and a half years. Secondly, I can't handle him without his medicine for that long. Not to mention, school has been pretty much totally pointless this past week due to his behavior. Waiting on a call now from his psychiatrist. . .


Last night, I gave Evelio his other medicine (Klonidine *don't know how to spell it* ), and also a dose of Tylenol because he kept holding his head and I imagined his head was hurting from all the screaming, and a dose of Melatonin. For the past 3 days he has been sleeping 2-3 hours at night, the rest is spent screaming and hitting himself and throwing things across his bedroom. He wasn't even napping very long during the day, which is highly unusual for him. Usually he'll take a nap everyday for at least 2 hours, and is ready for bed again by 8:30. Anyhow, after his medicine, I put him to bed, and after about 30 minutes of silence, I thought he must be asleep. I was wrong. He started squealing at first, and then came the screaming and crying. I let him continue this for a while, thinking he was only just going through another wave of meltdown, as we had been going through this for 3 days. Then, I couldn't stand it anymore, and he wasn't stopping so I went to his room and tried to calm him down. I tried laying with him and he kept pushing my hand off of him and slapping his arm. I picked him up and took him to the living room where Robert (my fiance) and I were watching the movie "Courageous", (fantastic movie btw). I sat him down with me and he couldn't sit still and was still crying and screaming. Usually, I can offer him my hand and ask him what he wants and he'll lead me to it, or, if he's hurting, will put my hand where he's hurting. For the course of this meltdown, however, he just slapped my hand away or pulled away from me. Then, he got up and started stomping around, and I noticed that he was digging the palm of his hand into his left ear. He usually puts his hands over his ears as a stimming behavior, part of the Autism. But, now, he burst out in tears and a 'heart-break' cry and was pushing on his ear. I told Robert that I bet he had an ear infection.


Evelio had tubes put in his ears in September of 2009, about 2 weeks before his 2nd birthday. He hadn't had an ear infection in the 2 and a half years since then. Everything made since now. Robert and I decided to take him to the ER. Indeed, he has an ear infection in both ears. We got a prescription for Tylenol with Codeine and Augmentin. Pharmacies were closed last night, so we (Evelio and I) basically got approximately 2.5 hours of sleep last night. Robert went to work at 6:30 this morning and he has the car, so the prescriptions are still not filled. They won't be filled until 4pm when he gets off. . .


In the meantime, Evelio is so tired, it's making him more upset. He'll fall asleep for 20-30 minutes and then wake up screaming.

He's pinched and hit me and tried to choke me. My heart breaks for him. And there is absolutely nothing I can do. I feel terrible on top of everything because his ear has probably been hurting for a while and he was trying to tell me with his behavior, but I didn't guess that. He hasn't had a fever that I can tell. I can never take his temperature because he won't let me. The last time I tried to take it, he gave me a great set of claw marks down the side of my neck. But, he hasn't felt hot.


I really hate Autism right now. Well, I hate it all the time, but right now I'm really feeling the anger. I just wish he could talk, or at least in some way, let me know when he's hurting. He finally showed me last night, but he has a high pain tolerance, so I can just imagine how badly it is hurting now that he is actually reacting to the pain.


I feel like I'm on the verge of tears today. I just don't know what to do. I can't help him and I should be able to. He doesn't understand why I can't make it stop hurting and I think that's why he is attacking me. Then, when he looks at me and cries that heart-break cry and lightly touches my arm it's like he's begging me to make it stop and I feel the tears welling up in my eyes. . .


I hope this is over soon. . .

The Road Continues: A General Catch Up

Everything else that has happened since Evelio started school.


By the end of Evelio's first year in the Little House Program, I did not notice the major improvement I was hoping for. I had heard stories from other parents about how once their kids got in school, they had overcome so much. I was extremely disappointed at finding he hadn't really retained any of what his teacher had taught him in class. I'm not bashing his teacher, I love her, I was just not happy with his progress.


With the summer passing, my hopes began to rise again. I had applied for Evelio to attend the local head start's 3 year old program. (Evelio would be shortly turning 4, but his birthday is 7 days after the 21st, so they still classified him as ineligible for regular public school head start). I was absolutely sure they could not turn him away because the application clearly stated that this facility considered primarily income first, and then special needs. Of course, he was accepted, and this made me extremely excited. Here's just what he needed! After all, now he would be getting head start services as well as the Little House instruction.


We had another IEP meeting. I expressed my concerns with the head start staff about Evelio's aggressive behavior. They assured me that I had nothing to worry about. "Oh just give him 2 weeks, then he'll be normal like everyone else." Normal like everyone else? I disregarded this again expressed my concerns. I was told, "Well, if you feel more comfortable, you are welcome to come and sit with Evelio while he is in class." This made me feel much better about the situation. After the first 2 days, I became very upset and began thinking it wasn't going to work out. First of all, they had 17 kids in his class with only 2 teachers and one volunteer (unless I was there). Second, everything they were teaching was way over Evelio's level, so I'm sure he felt completely lost, and they did not try to include things that would help him learn as well. Over the next 2 weeks or so, he was sent home at least 3 times for attacking or fit throwing. Then, they requested a meeting and proposed the idea of cutting down his day. I didn't want to at first, but then I thought that might work since Evelio is NOT a morning person. So we changed his IEP to state that he would not come to school until 10:30. Then a few more weeks passed, and more times than I could keep track of, he was sent home.


Then one day I got a call. A call requesting yet another meeting to ammend Evelio's IEP. I was absolutely furious. I researched some information about paraprofessionals for special needs kids. I took this information along with my parent aide advisor and her supervisor for support. We got to the meeting and the proposal was to dismiss Evelio from the head start classroom because he was not ready. My paraprofessional idea was shot down by the head start's "limited funding". To put a long story short, they already had the amendment typed out and sitting pretty just waiting for me to sign it. Great point to a meeting, huh?


Anyhow, he still attends the Little House Program. We have changed his medication around a few times. We tried Abilify. . .no success. Depakote. . .no success. Then we went right back to Risperdal and coupled it with a medication called Clonidine. It is working marvelously. Also we bought some Melatonin because he was waking up frequently during the night. Very satisfied with the meds at this time.


Now that all the background information has been covered. . .


Time for the real stuff. . .