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. . .
Thursday, June 28, 2012
Monday, June 11, 2012
The New Approach: Evelio's Re-Evaluation
At our family therapy session on June 8th, Evelio's therapist told us that he had finally gotten in to see the head ABA therapist (after being at the school for a month and a half!) and that she (Dr. Chandler) had totally changed his care plan.
Keila showed us the behavioral notes for Evelio for the past 2 weeks and he was having 12+ aggressions on day shift and evenings and around 1-3 on overnights. :(. . . .
As I said, Dr. Chandler re-evaluated Evelio. She sat through all his class time and observed him at leisure activities also. She concluded that his aggressive outbursts were mainly due to him not understanding what is going on. She said that they were trying teach him things well beyond his level of comprehension and it was stressing him out which led to frustration and violent outbursts. She estimated his functioning level at only 9 months. When I heard that my eyes filled with tears. When he was evaluated in June 2010, when he was 2 and a half years old, the Child Study Center at OKC children's hospital estimated his functioning age at between 8 months and 13 months in various areas. 8 months was the estimation for expressive and receptive language. And now, a full 2 years later, with therapy and school implemented during that time, he has regressed in most areas to 9 months! So, Dr. Chandler decided to changed their approach.
- Stop Potty-Training
At first I didn't like that. I want him to use the toilet. However, keeping in mind that his mental age is only 9 months, we have to think of him as being a 9 month old baby instead of looking at the monster almost 5 year old boy that he is. Now it is impractical to teach a 9 month old baby how to use the toilet, correct? Now I see why they want to stop. Evelio is seriously delayed in more important areas that we should be worrying about right now. Looking at it that way, potty-training in my opinion can be put on the back-burner. Now, Evelio has NO problem peeing in the toilet. He does not know when he has to pee, but he knows when he is in front of the toilet, that he should try to pee. He has memorized the routine of pulling his pants down and standing to pee, flushing the toilet, and pulling his pants up. Even when he doesn't need to pee, he still pushes and tries to pee. If you try to sit him on the toilet, he freaks out. So they are still going to take him to the toilet every hour so that he doesn't forget the routine. But that is what we need to bear in mind. He is not actually potty-trained in #1 because he doesn't know when he has to go, he has only memorized the routine of what is supposed to be done when he sees a toilet. There is a big difference.
- Work on Cooperation and Compliance
In order to teach Evelio anything, they need him to cooperate and comply with tasks. Evelio can barely sit through 1-2 minutes of anything before becoming frustrated and restless. Therefore, they are going to stop trying to teach him any new academic skills at the moment. They are going to set him very short assignments (lasting a maximum of 5 minutes). He will have his assignment and a short playtime immediately after and then back to another assignment. This will teach him the concept of "if I do this, after I can do what I want". Ultimately, this will serve as his motivator for completing tasks. Also, they plan on rewarding him for EVERY good thing that he does. Meaning, when they tell him "Pick that block up" and he does that, BAM he gets a Skittle. Then they say, "Put the block in this bucket," and he does it, he gets another Skittle. This will make him more inclined to follow directions. Once he grasps that, they will only give him a Skittle for every 3 things he does right, and so on and so forth.
Now, after he starts cooperating and complying, they will start increasing the time of assignments and decreasing the playtime following, until his assignments go from one to another with no playtime. Then, after he is cooperating with that, they will start increasing the level of difficulty on the assignments very gradually.
This is going to take a LONG time. They told me to take the small achievements as huge ones. That's something they don't need to tell me. I have been doing that for 2 years already. I take nothing for granted when it comes to what Evelio can do and what he knows. I have mixed feelings on this session. I feel very happy that they finally know how they are going to approach him and help him. I am happy that they do believe he can be helped and taught. But, also I feel very crushed at the fact that he's only at a 9 month level. Him regressing even after 2 years of therapy and school makes me think that maybe nothing will help. I try to steer myself away from those thoughts. This is definitely not the life I wanted for my son. I can only hope that through the school staff and therapists and my efforts and with time, he can make progress. . . and not regress. . .
That's all I have. . . :(
Keila showed us the behavioral notes for Evelio for the past 2 weeks and he was having 12+ aggressions on day shift and evenings and around 1-3 on overnights. :(. . . .
As I said, Dr. Chandler re-evaluated Evelio. She sat through all his class time and observed him at leisure activities also. She concluded that his aggressive outbursts were mainly due to him not understanding what is going on. She said that they were trying teach him things well beyond his level of comprehension and it was stressing him out which led to frustration and violent outbursts. She estimated his functioning level at only 9 months. When I heard that my eyes filled with tears. When he was evaluated in June 2010, when he was 2 and a half years old, the Child Study Center at OKC children's hospital estimated his functioning age at between 8 months and 13 months in various areas. 8 months was the estimation for expressive and receptive language. And now, a full 2 years later, with therapy and school implemented during that time, he has regressed in most areas to 9 months! So, Dr. Chandler decided to changed their approach.
- Stop Potty-Training
At first I didn't like that. I want him to use the toilet. However, keeping in mind that his mental age is only 9 months, we have to think of him as being a 9 month old baby instead of looking at the monster almost 5 year old boy that he is. Now it is impractical to teach a 9 month old baby how to use the toilet, correct? Now I see why they want to stop. Evelio is seriously delayed in more important areas that we should be worrying about right now. Looking at it that way, potty-training in my opinion can be put on the back-burner. Now, Evelio has NO problem peeing in the toilet. He does not know when he has to pee, but he knows when he is in front of the toilet, that he should try to pee. He has memorized the routine of pulling his pants down and standing to pee, flushing the toilet, and pulling his pants up. Even when he doesn't need to pee, he still pushes and tries to pee. If you try to sit him on the toilet, he freaks out. So they are still going to take him to the toilet every hour so that he doesn't forget the routine. But that is what we need to bear in mind. He is not actually potty-trained in #1 because he doesn't know when he has to go, he has only memorized the routine of what is supposed to be done when he sees a toilet. There is a big difference.
- Work on Cooperation and Compliance
In order to teach Evelio anything, they need him to cooperate and comply with tasks. Evelio can barely sit through 1-2 minutes of anything before becoming frustrated and restless. Therefore, they are going to stop trying to teach him any new academic skills at the moment. They are going to set him very short assignments (lasting a maximum of 5 minutes). He will have his assignment and a short playtime immediately after and then back to another assignment. This will teach him the concept of "if I do this, after I can do what I want". Ultimately, this will serve as his motivator for completing tasks. Also, they plan on rewarding him for EVERY good thing that he does. Meaning, when they tell him "Pick that block up" and he does that, BAM he gets a Skittle. Then they say, "Put the block in this bucket," and he does it, he gets another Skittle. This will make him more inclined to follow directions. Once he grasps that, they will only give him a Skittle for every 3 things he does right, and so on and so forth.
Now, after he starts cooperating and complying, they will start increasing the time of assignments and decreasing the playtime following, until his assignments go from one to another with no playtime. Then, after he is cooperating with that, they will start increasing the level of difficulty on the assignments very gradually.
This is going to take a LONG time. They told me to take the small achievements as huge ones. That's something they don't need to tell me. I have been doing that for 2 years already. I take nothing for granted when it comes to what Evelio can do and what he knows. I have mixed feelings on this session. I feel very happy that they finally know how they are going to approach him and help him. I am happy that they do believe he can be helped and taught. But, also I feel very crushed at the fact that he's only at a 9 month level. Him regressing even after 2 years of therapy and school makes me think that maybe nothing will help. I try to steer myself away from those thoughts. This is definitely not the life I wanted for my son. I can only hope that through the school staff and therapists and my efforts and with time, he can make progress. . . and not regress. . .
That's all I have. . . :(
Wednesday, June 6, 2012
My End of the Phone
Just a reminder, Evelio has now been at his inpatient facility for one month and one week.
He calls me every night. Really, his 1:1 aide calls me and hands him the phone. Now, Evelio is pre-verbal. I use pre-verbal because he makes noises so he is not mute but he doesn't speak English words, or any language for that matter. He's created his own language and honestly I wish he could teach it to me.
Anyhow, when he calls me, there are a few different types of "conversations" we have. Now, they all last around the same time frame. Usually from 10 seconds to 2 minutes (rarely). Evelio doesn't know how to use the phone, but I have asked the therapist to try and work with him an hopefully she can teach him the concept of it.... Anyway, back to the type of phone calls.
• HEAVY BREATHER
This is the type of phone call where, no matter what is said on my end, all I hear is breathing. And not just normal breathing, I'm talking HEAVY loud breathing. I get this type of phone call a lot. But hey I am not complaining. It always excellent to know your child has a healthy set of lungs.
• 10 SECOND QUICKIE
Our conversation will go something like this: Me - "Hi baby, I love you". Evelio - "ahhhh ung". And then the aide comes back on and says that he has handed the phone back to her and has run off. I guess that's his way of saying "ok mom you heard me and now I have to get back to more pressing matters like my bowl of popcorn might get stolen by some kid and I'll have to go to time away for kicking some ass" in two short word variations. (phone calls are usually done during "movie and popcorn" time before bed)
• THE BLABBER
This is my favorite type of phone call. This is where as soon as Evelio gets the phone he's just giggling and babbling away and I can't even get a word in. I have time to say "hi" and that's it. All I hear on the line is "ahhhh tee-tah eeeeee dai-yah ung ti ti ti" giggling madly "eeeee yah eee yah dai-ya eee" and some more maniac laughing. That kind of phone call always makes my day.
• TEAR JERKER
Pretty self explanatory. This is the phone call that is filled with tears from his end, that leads to tears from my end. Sometimes his crying sounds heartbroken, sometimes he sounds more like he's grumpy and whining. Either way I can tell that my baby is unhappy and it breaks my heart.
No matter what type of phone call I get, I look forward to my phone ringing every night so Evelio can hear my voice.
He calls me every night. Really, his 1:1 aide calls me and hands him the phone. Now, Evelio is pre-verbal. I use pre-verbal because he makes noises so he is not mute but he doesn't speak English words, or any language for that matter. He's created his own language and honestly I wish he could teach it to me.
Anyhow, when he calls me, there are a few different types of "conversations" we have. Now, they all last around the same time frame. Usually from 10 seconds to 2 minutes (rarely). Evelio doesn't know how to use the phone, but I have asked the therapist to try and work with him an hopefully she can teach him the concept of it.... Anyway, back to the type of phone calls.
• HEAVY BREATHER
This is the type of phone call where, no matter what is said on my end, all I hear is breathing. And not just normal breathing, I'm talking HEAVY loud breathing. I get this type of phone call a lot. But hey I am not complaining. It always excellent to know your child has a healthy set of lungs.
• 10 SECOND QUICKIE
Our conversation will go something like this: Me - "Hi baby, I love you". Evelio - "ahhhh ung". And then the aide comes back on and says that he has handed the phone back to her and has run off. I guess that's his way of saying "ok mom you heard me and now I have to get back to more pressing matters like my bowl of popcorn might get stolen by some kid and I'll have to go to time away for kicking some ass" in two short word variations. (phone calls are usually done during "movie and popcorn" time before bed)
• THE BLABBER
This is my favorite type of phone call. This is where as soon as Evelio gets the phone he's just giggling and babbling away and I can't even get a word in. I have time to say "hi" and that's it. All I hear on the line is "ahhhh tee-tah eeeeee dai-yah ung ti ti ti" giggling madly "eeeee yah eee yah dai-ya eee" and some more maniac laughing. That kind of phone call always makes my day.
• TEAR JERKER
Pretty self explanatory. This is the phone call that is filled with tears from his end, that leads to tears from my end. Sometimes his crying sounds heartbroken, sometimes he sounds more like he's grumpy and whining. Either way I can tell that my baby is unhappy and it breaks my heart.
No matter what type of phone call I get, I look forward to my phone ringing every night so Evelio can hear my voice.
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