You would think that after twenty years of psychotherapy that I would get how my behavior inpacts what happens to me. I have't "gotten it" yet. I am still trying.
There is such a thing as "I love you, I hate you syndrome". It is real and I know it is. After a series of events, where I "perceive" whatever is happening at the time, I get angry and I feel the pressure building in side of me. It isn't after one event or two or even three. It is around the fourth or fifth event where I can't control my inner turmoil and I explode.
This is what I found from a website called "Ask a Biploar".
Sounds familiar. I watch my son with these same issues of perceiving the world differently.
So how do I correct this? I don't know the answer. I attend my therapy appointments and it isn't enough. I can enroll in Diabelicctal Behavior Therapy and do my best to have things fall off like water beads from a oiled iron skillet. That is a real skill that is taught in DBT.
I have a difficult time writing this because it feels like I am having a downright bitch fest. "You did this to me!" Well, no, I reacted to your way of living because I didn't like how I felt at that moment. There is a huge difference from reacting to your environment instead of saying, "you made me angry." Becoming angry was my choice.
"I love you, I hate you" is real for me. It doesn't have to be a boy friend, girlfirend relationship. It can be with potential friends. I am so screwed up that I don't know how to be friends with someone. The fact that I can write that I don't know how to be friends with someone hurts me. Twenty years of psychotherapy and I feel I haven't learned a thing. I do know that I am a better person than I was. BiPolar and it's ugliness made a mess out of my life and I am still picking up the pieces.
I worry about what I write but I still write. It is important to me to share what this life is like with BiPolar. Not enough material is written about this devestating illness. There is not enough mental health services for us and there is not enough understanding. I could go back and apologize to those that I have violently pushed out of my life with my words but I won't do that. I should of walked away at the first sign of turmoil. I had the signs and I still pushed forward.
I can't fix things after I explode and I have to live with my reactions and that should be enough to teach me a lesson. I was talking to a friend, a real one that puts up with me, and she said that when she listens to me she sees a hamster going round and round. Yeah, I can see that. I make the same mistakes over and over. Things calm down in my life and when they reve up I again make the same mistakes over and over. Hell has no furry for those that come across my path when life feels unbearable.
One of the stories that I would like to share is my love afair with Johnathon. I met Johnathon when I was 20 years old. I will never forget it. I was with a "potential" friend in a bar when I first saw him. He walked through a cloud of smoke and he was just there standing and it was love at first site. It wasn't a healthy relationship and I still kept going. What hurts is that I was so messed up that I used my "potential" friend to get to him. I didn't get to keep anyone in that group of folks. It is difficult to write how I wasn't able to cope with a group dynamic. During our last phone call I couldn't speak. No words would come out of my mouth. For years we would go on and off again becasue I couldn't communicate my needs. He hung up and changed his phone number. It was that day that I called a therapist and it was a start to finding out that I was BiPolar. I have him to thank.
"The phrase “I hate you, don’t leave me” was made popular by a book on the subject of something called Borderline Personality Disorder (BPD), although those with Bipolar Disorder (BP) can also show this pattern. Essentially it is what it says… and we’ll add to more of that here. The world of someone with BPD or BP if full of conflict and trying to handle a world not necessarily perceived the same as someone without these issues.
Saturday, December 21, 2013
Thursday, November 7, 2013
Out of State Care
Driving 348 miles, I arrived at my destination just under 6 hours. Pulling to the curb I asked a valet attendant where the nearest parking garage was located and he most likely saw my discomfort and fear and parked the car for me. Thinking, "well this might not be so bad." I walked into the building where I was to meet possible future caregivers of my child.
Thinking back on this experience I realize that I have a responsibility to not slam these caregivers but to also share our story. It is a combination that can anger some and evoke responses from many. Everybody has their story. Our story begins the day we are born and it ends the day that we die. Of course it all depends on what story I want to tell whether it is domestic violence, mental health difficulties or Autism and the list goes on and on.
Today my story is the continual saga of Sam's experience with school.
Walking onto the unit I noticed that the patients were non verbal. To many this environment would imply that the population would be low functioning, kids of all ages, who are diagnosed with Autism. I am not a fan of the two word phrase, low functioning. I am not a fan of the two word phrase, high functioning either. I don't believe that it is a fair use of language. But our use of this particular language continues and it will fairly describe the feelings that this environment evoked in me.
I toured the facility and I continued to ask myself, "Why am I here?" and fully knowing the answer, "I am trying to find some people to listen to us and to hear my cry, "Can you please help me by writing some professional reports to adequately describe my child so people will listen." My focus was to find support so the school environment would give my child an adequate education.
I had received a call from intake asking me if I was able to make the 6 hour drive and it just so happened that she called a few hours after a disturbing phone call. The speech pathologist had called a few hours before explaining to me that she is recommending that services be stopped due to non compliance from my child. Tears streaming down my face I volunteered to the intake coordinator that yes, I was a mess. I meant that I was a mess at that particular hour of day. I am not a mess all the way around, 24 hours a day. Again, it was my misuse of language. You would think I would learn. One more lesson that my use of language which makes it apparently clear to me if I, a non autistic adult, missuses language, that my child, diagnosed with severe expressive, receptive and pragmatic language, does indeed need the services.
They asked me, "Can you see your son here?" and I thought, "No." It had nothing to do with the clientele. It had to do with my conversation with the caregivers. I know they are educated and I know they think that they are correct in their learning of how to handle scientific situations but it all comes down to this, "nobody knows how to take better care of my son than me." No parent should feel less than or wrong for placing their child into the care of others if they feel it is the right choice for their child. Nobody, and I mean nobody, is allowed to make me feel that I am a "less than parent."
It all boiled down to one thing. I knew that the emphasis would be about me. She said one thing to me that sealed the deal. It is this moment, when I think back, on where the red flags started waving in the hospital breeze of ambiance that made me want to run out the door. It was the intake coordinator saying these few words, "Well you said you were a mess." Experience has showed me that the focus would of been on me not the school.
And of course if this had not been the case, I wouldn't of been able to provide my child with this opportunity because of the all mighty dollar.
My conclusion is easy for me to understand. Never talk about myself and never assume that people are out there who will stand up against an institution governed by people that are making rules where I, and my child, don't have a voice.
It is sad and controversial. It is also a conversation that I am willing to have with others. I am not afraid. My child is amazing, talented, kind and extremely intelligent. It is my job to get him to a place of self sufficiency. Sam and I will conquer this world together.
I leave you with this. It is a message from a talented photographer:
Everyone communicates differently. The main thing for Sam is communicating in alternative ways than what some people might traditionally expect. Everyone has a purpose in this world. Sam is here to create art and teach others with his condition that anything can be achieved. Some of the most successful people like Einstein, Steve Jobs, Leonardo Di Caprio and John Lennon didn't even finish high school but found their way.
I couldn't of said it better myself. And again, no parent should feel less than for making agonizing decisions on what is best for their child. It doesn't matter what the decision is. It just doesn't matter.
Thinking back on this experience I realize that I have a responsibility to not slam these caregivers but to also share our story. It is a combination that can anger some and evoke responses from many. Everybody has their story. Our story begins the day we are born and it ends the day that we die. Of course it all depends on what story I want to tell whether it is domestic violence, mental health difficulties or Autism and the list goes on and on.
Today my story is the continual saga of Sam's experience with school.
Walking onto the unit I noticed that the patients were non verbal. To many this environment would imply that the population would be low functioning, kids of all ages, who are diagnosed with Autism. I am not a fan of the two word phrase, low functioning. I am not a fan of the two word phrase, high functioning either. I don't believe that it is a fair use of language. But our use of this particular language continues and it will fairly describe the feelings that this environment evoked in me.
I toured the facility and I continued to ask myself, "Why am I here?" and fully knowing the answer, "I am trying to find some people to listen to us and to hear my cry, "Can you please help me by writing some professional reports to adequately describe my child so people will listen." My focus was to find support so the school environment would give my child an adequate education.
I had received a call from intake asking me if I was able to make the 6 hour drive and it just so happened that she called a few hours after a disturbing phone call. The speech pathologist had called a few hours before explaining to me that she is recommending that services be stopped due to non compliance from my child. Tears streaming down my face I volunteered to the intake coordinator that yes, I was a mess. I meant that I was a mess at that particular hour of day. I am not a mess all the way around, 24 hours a day. Again, it was my misuse of language. You would think I would learn. One more lesson that my use of language which makes it apparently clear to me if I, a non autistic adult, missuses language, that my child, diagnosed with severe expressive, receptive and pragmatic language, does indeed need the services.
They asked me, "Can you see your son here?" and I thought, "No." It had nothing to do with the clientele. It had to do with my conversation with the caregivers. I know they are educated and I know they think that they are correct in their learning of how to handle scientific situations but it all comes down to this, "nobody knows how to take better care of my son than me." No parent should feel less than or wrong for placing their child into the care of others if they feel it is the right choice for their child. Nobody, and I mean nobody, is allowed to make me feel that I am a "less than parent."
It all boiled down to one thing. I knew that the emphasis would be about me. She said one thing to me that sealed the deal. It is this moment, when I think back, on where the red flags started waving in the hospital breeze of ambiance that made me want to run out the door. It was the intake coordinator saying these few words, "Well you said you were a mess." Experience has showed me that the focus would of been on me not the school.
And of course if this had not been the case, I wouldn't of been able to provide my child with this opportunity because of the all mighty dollar.
My conclusion is easy for me to understand. Never talk about myself and never assume that people are out there who will stand up against an institution governed by people that are making rules where I, and my child, don't have a voice.
It is sad and controversial. It is also a conversation that I am willing to have with others. I am not afraid. My child is amazing, talented, kind and extremely intelligent. It is my job to get him to a place of self sufficiency. Sam and I will conquer this world together.
I leave you with this. It is a message from a talented photographer:
Everyone communicates differently. The main thing for Sam is communicating in alternative ways than what some people might traditionally expect. Everyone has a purpose in this world. Sam is here to create art and teach others with his condition that anything can be achieved. Some of the most successful people like Einstein, Steve Jobs, Leonardo Di Caprio and John Lennon didn't even finish high school but found their way.
I couldn't of said it better myself. And again, no parent should feel less than for making agonizing decisions on what is best for their child. It doesn't matter what the decision is. It just doesn't matter.
Definition of Mental
1. a: of, relating to, or being intellectual as contrasted with overt physical activity.
2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.
b: mentally disordered, mad, crazy.
I choose being an intellectual as my definition of being mental.
*The photo that I use for my background was taken by Sam.
Monday, September 23, 2013
I Was Going To Make A Facebook Post But...
I was going to make a post but I decided against it. My daughter always says that her friends are interested in Sam's page but my posts are too long. I did a presentation last week and I was telling my daughter about how I make speeches without notes and she says yeah, you don't need notes. I think her point is that I never run out of things to say.
So I am blogging my post because I have too much on my mind.
Today Sam worked with one his workers for an hour at a playground and it isn't respite for me. I have to stay. This agency has a rule that the parent must be present always. I emphasize the word always. I couldn't even go around the corner to the store to get a soda. I am not going to lie. Sitting for an hour in my car is no fun. So I was reading this book "The Whole Brain Child" that was recommended by Sam's Music Therapist. It was talking about how you should empathize with your child if they have had a negative experience. It also said that you should talk about it with your child. I wanted to throw that book out the window. First of all that book was written for the parent who are raising neurotypical kids. They are talking about if they were in a car accident or some one time event. What about being dragged to a 10x10 closet every day. I do talk about the restraints and seclusions with my child. I never want him to think that these awful things that have happened to him is his fault. I am told by the experts that I am part of the problem because I do talk about the restraints with my child. Duh! He already knows about them. Am I just supposed to just sit and do nothing because somebody else thinks it isn't a big deal or it isn't healthy for Sam. These professionals thave the "They get over it" mentality. No they don't get over it. The parents don't get over it either. I didn't throw the book out the window because it is a library book and I don't have the money to pay for it. If it was my own book I would of gotten out of my car and thrown it away while spitting on it. No offense to Sam's Music Therapist. I probably should finish the book and have a intellectual discussion about it but I am not in the mood.
My whole point is this...the book wasn't written for a parent who has a child with Autism. The book wasn't written for misunderstood children who have a dual diagnosis of Autism and a Mental Health diagnosis. The book wasn't written on what to do when the parent is seen as part of the problem. The book doesn't have any of the answers that I am searching for.
On the way home from working with this particular worker Sam said, "Yeah, I was kinda sad."
"Sam, why were you sad?"
"I forget."
"No, you didn't forget. You can tell me anything."
"Because sometimes I have visions of people hurting me. Like in my old school where the guy threw me and I almost hit the wall. I can't sleep at night. I don't like going to sleep at night."
As Sam's parent I am not backing down and telling this new school that they can lay their hands on him. Once they lay their hands on Sam, Sam is going to go into fight or flight.
I feel sick.
So I keep doing what I am doing. I am teaching Sam photography and we are starting really cool projects to show the world that Sam CAN. To heck with the educational system. If I get him to a place where he is safe and happy, we can do the fun stuff after school.
People ask me, "So what makes you happy?" It is simple what makes me happy. Ask Sam to take your photo. Tell Sam, "Wow, your photography is awesome." It also makes me happy when someone asks me to donate one of Sam's prints. This is where I do get a little snobish, or maybe not (not really sure). I like it when people specifically ask for a print for their specific cause. I am so unbelievably busy that I like it even more when they remind me when I have forgotten to get them the print. I had one of my favorite ladies from our YMCA call me twice for the print. I don't need a thank you. I just want to know that you really want the print. I had one experiences where I have donated and the woman didn't even look like she cared. I never want to feel that way again. It felt lonely. I work too hard to feel lonely.
As a side note, there are two organizations that never have to ask for a donation because they have become a part of who I am. They know who they are.
It also makes me happy when I get to hang out with Sam. I don't care if he has the camera in his hands. He is a really cool kid.
So tonight I was thinking about my post and how I should have my tag line be "Thanks for sharing and caring" but that is corny. I do appreciate Sam's fans sharing his facebook page. I also appreciate their generosity and their well wishes to communicate to us how much they care about my son. I am a fortunate Mom.
Now all I have to do is to keep him safe and happy from 8am-2pm weekdays.
So I am blogging my post because I have too much on my mind.
Today Sam worked with one his workers for an hour at a playground and it isn't respite for me. I have to stay. This agency has a rule that the parent must be present always. I emphasize the word always. I couldn't even go around the corner to the store to get a soda. I am not going to lie. Sitting for an hour in my car is no fun. So I was reading this book "The Whole Brain Child" that was recommended by Sam's Music Therapist. It was talking about how you should empathize with your child if they have had a negative experience. It also said that you should talk about it with your child. I wanted to throw that book out the window. First of all that book was written for the parent who are raising neurotypical kids. They are talking about if they were in a car accident or some one time event. What about being dragged to a 10x10 closet every day. I do talk about the restraints and seclusions with my child. I never want him to think that these awful things that have happened to him is his fault. I am told by the experts that I am part of the problem because I do talk about the restraints with my child. Duh! He already knows about them. Am I just supposed to just sit and do nothing because somebody else thinks it isn't a big deal or it isn't healthy for Sam. These professionals thave the "They get over it" mentality. No they don't get over it. The parents don't get over it either. I didn't throw the book out the window because it is a library book and I don't have the money to pay for it. If it was my own book I would of gotten out of my car and thrown it away while spitting on it. No offense to Sam's Music Therapist. I probably should finish the book and have a intellectual discussion about it but I am not in the mood.
My whole point is this...the book wasn't written for a parent who has a child with Autism. The book wasn't written for misunderstood children who have a dual diagnosis of Autism and a Mental Health diagnosis. The book wasn't written on what to do when the parent is seen as part of the problem. The book doesn't have any of the answers that I am searching for.
On the way home from working with this particular worker Sam said, "Yeah, I was kinda sad."
"Sam, why were you sad?"
"I forget."
"No, you didn't forget. You can tell me anything."
"Because sometimes I have visions of people hurting me. Like in my old school where the guy threw me and I almost hit the wall. I can't sleep at night. I don't like going to sleep at night."
As Sam's parent I am not backing down and telling this new school that they can lay their hands on him. Once they lay their hands on Sam, Sam is going to go into fight or flight.
I feel sick.
So I keep doing what I am doing. I am teaching Sam photography and we are starting really cool projects to show the world that Sam CAN. To heck with the educational system. If I get him to a place where he is safe and happy, we can do the fun stuff after school.
People ask me, "So what makes you happy?" It is simple what makes me happy. Ask Sam to take your photo. Tell Sam, "Wow, your photography is awesome." It also makes me happy when someone asks me to donate one of Sam's prints. This is where I do get a little snobish, or maybe not (not really sure). I like it when people specifically ask for a print for their specific cause. I am so unbelievably busy that I like it even more when they remind me when I have forgotten to get them the print. I had one of my favorite ladies from our YMCA call me twice for the print. I don't need a thank you. I just want to know that you really want the print. I had one experiences where I have donated and the woman didn't even look like she cared. I never want to feel that way again. It felt lonely. I work too hard to feel lonely.
As a side note, there are two organizations that never have to ask for a donation because they have become a part of who I am. They know who they are.
It also makes me happy when I get to hang out with Sam. I don't care if he has the camera in his hands. He is a really cool kid.
So tonight I was thinking about my post and how I should have my tag line be "Thanks for sharing and caring" but that is corny. I do appreciate Sam's fans sharing his facebook page. I also appreciate their generosity and their well wishes to communicate to us how much they care about my son. I am a fortunate Mom.
Now all I have to do is to keep him safe and happy from 8am-2pm weekdays.
Definition of Mental
1. a: of, relating to, or being intellectual as contrasted with overt physical activity.
2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.
b: mentally disordered, mad, crazy.
I choose being an intellectual as my definition of being mental.
*The photo that I use for my background was taken by Sam. You can find more of Sam's work at https://www.facebook.com/SnapshotsBySamMaloney
Wednesday, September 18, 2013
"He Has To Fail To Get Help"
This is a video of my son Sam's photography
I really don't know what to title this blog but it doesn't really matter. Right now the only thing I know is that Sam has to fail to get help.
Let me back up. During the 11/12 school year he was restrained and put in a 10x10 closet with someone probably putting their foot at the bottom of the door while he was trying to get out of his prison cell. The Behavior Plan was written up so that he was secluded in a larger room with the guy who restrained him for the rest of the day. I went into the school and said, "No, you can't do that." Lucky for me we had a behavior specialist who listened and tried to do the best that she could. They fired her at the end of the school year. Probably because she wanted to help the parents.
During the 12/13 school year Sam was restrained and put in that 10x10 closet until he wanted to harm himself. I am not joking when I say that I had visions of him taking off his shoelaces and hanging himself on the door. It has happened in this country more than once. I had Sam on suicide watch for months and he still can't sleep in his own room. I can stand on the mountain tops and scream that prisoners are treated better than our children and nobody will hear me. We had three formal investigations of abuse and nothing happened. I have a lawyer and she can't help. I have advocates that I have completely given up on. I have therapists that I am shutting the door on. I am finished. I am fed up. (This does not include the Music and Art Therapists. These are the people, and the only ones I have met this far that get it)
So what got me all in a tizzy? It was my conversation with the social worker from our Autism Unit. Again, having to back up. The leading researcher in our area is very connected in the country. She also knows her stuff. I met her at a Autism Speaks Walkathon Kickoff Dinner where Sam spoke about his photography and Autism. He was eleven years old at the time and I wrote him this speech that he read in front of everybody. The speech read, "I am Sam. My Mom tells me I have Autism. My Mom tells me that Autism is not who I am. I am Sam. I am a good person and I love to fish." He was so sticking cute when he read that speech. At the end of this speech, the doctor came up to Sam and asked if he had any pictures of fish. The doctor is petite and almost saw Sam eye to eye. I had never heard anyone talk to Sam the way she did that day. I framed two of his fish photos took it to the Autism Unit and gave them to her. They are hanging in her office.
This wonderful doctor had contacted me and asked if they could buy some of Sam's prints to put in their newly decorated hallway in the hospital. I was thrilled. I saw her at an Autism Treatment Conference and she asked me how things were going and I just sat and cried. She told me to make an appointment and I did.
On the day of the appointment a few weeks back I didn't take Sam and just made it a consult visit. I thought she was going to set Sam up with behavioral specialists who would come into the school but that isn't what she suggested. She said she wanted to make a referral for inpatient and the Kennedy Krieger Institute in Baltimore ,Maryland. I trust this woman completely and her and her social worker are the only two people I can trust. They are going to tell me how it is and I appreciate that. If I say but what about? They will say it won't happen because. The because is because the system is set up all wrong for our kids.
The doctor explained that our dual diagnosed kids are the ones that fall through the cracks. I have already figured this out. She says that in the Autism world the professionals talk too little (Picture Schedules and what not) and in the mental health world they talk too much. I have figured this out because when I go in there and make suggestions on how to combine the two they just look at me like I am from Mars.
I thought that the Kennedy Krieger Institute would be the answer to our prayers. It isn't. They would of taken him off his meds and start over. It is one of the leading institutes in this wonderful nation of ours that harm our kids and I felt like my prayers had been answered.
Today I found out that Sam has to fail at the next placement. New York State medicaid will not pay for an out of state placement unless we have exhausted the most restrictive environment in NY State. I also found out that I have to watch him fail. So if history repeats itself and they restrain him and put him in seclusion and he wants to harm himself, I have to pick him up at the hospital after they do a mental hygiene arrest. I don't know how many times I have to watch this happen but all I can do is sit back and watch things fall apart. If I want him to go to Kennedy Krieger I have to watch him fail.
Believe you me, I will be in their face if they hurt my child. There will be no prone restraints and they will call me and email by the end of the day. If Sam starts crying every night that he doesn't want to go to school and history repeats himself where he says that he wants to harm himself, I told the Autism Unit that I will be on the phone with them. After things fall apart the Autism Unit will step in and get him into Kennedy Krieger.
My job right now is to smile and tell Sam how wonderful the school will be even though a child was sent to Urgent Care after being put in a choke hold. I talked about it at the meeting and they said, "Well, that was in the group home." They are trained by the same people! I was trained in restraints and seclusions when I worked there and they are all trained in one room. The point that it was in the group home is mute and I tried to call him on it. The school representative at the meeting just looked away.
The only thing I am concentrating on is Sam's photography. I don't have any more money to send him to Hochstein for Music and Art Therapy. I am tapped out. Sam will be in day treatment and they will take over everything so all the outside services who prescribed his meds will be gone. I will be a the mercy of these people. There is also a chance that Sam will be successful. Only time will tell.
All I can do is smile and send Sam on a bus and tell him to have a nice day.
I am petrified.
I really don't know what to title this blog but it doesn't really matter. Right now the only thing I know is that Sam has to fail to get help.
Let me back up. During the 11/12 school year he was restrained and put in a 10x10 closet with someone probably putting their foot at the bottom of the door while he was trying to get out of his prison cell. The Behavior Plan was written up so that he was secluded in a larger room with the guy who restrained him for the rest of the day. I went into the school and said, "No, you can't do that." Lucky for me we had a behavior specialist who listened and tried to do the best that she could. They fired her at the end of the school year. Probably because she wanted to help the parents.
During the 12/13 school year Sam was restrained and put in that 10x10 closet until he wanted to harm himself. I am not joking when I say that I had visions of him taking off his shoelaces and hanging himself on the door. It has happened in this country more than once. I had Sam on suicide watch for months and he still can't sleep in his own room. I can stand on the mountain tops and scream that prisoners are treated better than our children and nobody will hear me. We had three formal investigations of abuse and nothing happened. I have a lawyer and she can't help. I have advocates that I have completely given up on. I have therapists that I am shutting the door on. I am finished. I am fed up. (This does not include the Music and Art Therapists. These are the people, and the only ones I have met this far that get it)
So what got me all in a tizzy? It was my conversation with the social worker from our Autism Unit. Again, having to back up. The leading researcher in our area is very connected in the country. She also knows her stuff. I met her at a Autism Speaks Walkathon Kickoff Dinner where Sam spoke about his photography and Autism. He was eleven years old at the time and I wrote him this speech that he read in front of everybody. The speech read, "I am Sam. My Mom tells me I have Autism. My Mom tells me that Autism is not who I am. I am Sam. I am a good person and I love to fish." He was so sticking cute when he read that speech. At the end of this speech, the doctor came up to Sam and asked if he had any pictures of fish. The doctor is petite and almost saw Sam eye to eye. I had never heard anyone talk to Sam the way she did that day. I framed two of his fish photos took it to the Autism Unit and gave them to her. They are hanging in her office.
This wonderful doctor had contacted me and asked if they could buy some of Sam's prints to put in their newly decorated hallway in the hospital. I was thrilled. I saw her at an Autism Treatment Conference and she asked me how things were going and I just sat and cried. She told me to make an appointment and I did.
On the day of the appointment a few weeks back I didn't take Sam and just made it a consult visit. I thought she was going to set Sam up with behavioral specialists who would come into the school but that isn't what she suggested. She said she wanted to make a referral for inpatient and the Kennedy Krieger Institute in Baltimore ,Maryland. I trust this woman completely and her and her social worker are the only two people I can trust. They are going to tell me how it is and I appreciate that. If I say but what about? They will say it won't happen because. The because is because the system is set up all wrong for our kids.
The doctor explained that our dual diagnosed kids are the ones that fall through the cracks. I have already figured this out. She says that in the Autism world the professionals talk too little (Picture Schedules and what not) and in the mental health world they talk too much. I have figured this out because when I go in there and make suggestions on how to combine the two they just look at me like I am from Mars.
I thought that the Kennedy Krieger Institute would be the answer to our prayers. It isn't. They would of taken him off his meds and start over. It is one of the leading institutes in this wonderful nation of ours that harm our kids and I felt like my prayers had been answered.
Today I found out that Sam has to fail at the next placement. New York State medicaid will not pay for an out of state placement unless we have exhausted the most restrictive environment in NY State. I also found out that I have to watch him fail. So if history repeats itself and they restrain him and put him in seclusion and he wants to harm himself, I have to pick him up at the hospital after they do a mental hygiene arrest. I don't know how many times I have to watch this happen but all I can do is sit back and watch things fall apart. If I want him to go to Kennedy Krieger I have to watch him fail.
Believe you me, I will be in their face if they hurt my child. There will be no prone restraints and they will call me and email by the end of the day. If Sam starts crying every night that he doesn't want to go to school and history repeats himself where he says that he wants to harm himself, I told the Autism Unit that I will be on the phone with them. After things fall apart the Autism Unit will step in and get him into Kennedy Krieger.
My job right now is to smile and tell Sam how wonderful the school will be even though a child was sent to Urgent Care after being put in a choke hold. I talked about it at the meeting and they said, "Well, that was in the group home." They are trained by the same people! I was trained in restraints and seclusions when I worked there and they are all trained in one room. The point that it was in the group home is mute and I tried to call him on it. The school representative at the meeting just looked away.
The only thing I am concentrating on is Sam's photography. I don't have any more money to send him to Hochstein for Music and Art Therapy. I am tapped out. Sam will be in day treatment and they will take over everything so all the outside services who prescribed his meds will be gone. I will be a the mercy of these people. There is also a chance that Sam will be successful. Only time will tell.
All I can do is smile and send Sam on a bus and tell him to have a nice day.
I am petrified.
Definition of Mental
1. a: of, relating to, or being intellectual as contrasted with overt physical activity.
2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.
b: mentally disordered, mad, crazy.
I choose being an intellectual as my definition of being mental.
*The photo that I use for my background was taken by Sam. You can find more of Sam's work at https://www.facebook.com/SnapshotsBySamMaloney
Saturday, August 24, 2013
My Heart Hurts
When something happens to one of our Autism kids we talk about it. We all talk about and it doesn't matter where on this globe called Earth we live. Autism is a global issue, it is also a Rochester, NY issue and it is where I currently live.
Thanks to Social Media all of this despairing information is available to all of us to share. The latest news was an injury sustained by a child while in a Group Home at our own Hillside Family of Agencies. I say the name out loud because the news is already out and the Group Home wasn't named but Hillside was so I am not ashamed to vocally say what agency it was. I am not ashamed because the school district wants to send my son to a school run by Hillside.
What happened to this child happens to children every day in our country. I won't go in a play by play but basically he was put in a choke hold and sustained substantial bruising. What makes this so very difficult for me is that I worked for Hillside. I worked on their Peaceful Community Initiative to lower the number of restraints in their vast land of services. I was also trained at Hillside which included training to place children in restraints and seclusion rooms. I feel sick on how slow the restraints are made with non disregulated people. They try to have the person come at you full force but face it, there are no real life scenarios happening. People would look at me with fear in their eyes saying, "I don't want to do this." They practiced the restraints anyway. They needed a job, they needed the money. I sat thinking on how much improvement is needed in the training. That was the reason why I was there. My job was to tell Hillside what I thought of the training. My words didn't mean anything. I was probably too controversial. I have to live by my standards and I have to keep it real. That training sucked.
It is called Hillside Family of Agencies. Family of Agencies? Family to who? Think about it....Family...of...Agencies. It is a group of people who work for Hillside and it is their family of workers that they are talking about. I don't know if I need to apologize but this is how I feel about it. I have been involved with schools for the past 7 years that don't want anything to do with me or my family. It is what they believe, what they think Sam needs and it is their policies that they abide by. It is their rules that they stand up for.
Am I angry? I am so angry I can hardly function. My mind is stuck on how to help Sam. It angers me that my advocate from the leading advocacy agency told me that the placement wasn't appropriate. It was this same advocate that said in the school meeting "Hillside, I have never visited Hillside. I would love to visit Hillside." What? Are you kidding me? She told me no to Hillside. She said to me, "That is not an appropriate placement. You ask them what the definition of insanity is and then you wait for their reply. You get the power back in your corner." I can't find the words to express how that feels. I felt duped. I am powerless. Or am I? That is one thing that I haven't figured out yet.
What is the definition of insanity. We all know what it is. It is doing the same thing over and over again without different results. My son needs a multi-sensory approach to education. It says so in his IEP. It was the school district that sat me down and said that they can't force any placement to do what my son needs. Why not? IT IS IN HIS IEP! It is also written that they can restrain him and put him in a seclusion room for 20 minutes. I know that they won't follow the need for a multi sensory approach but they will follow the IEP to restrain him. Restraining him is a far more easy approach than providing the appropriate approach to his educational needs. Nobody can tell me otherwise. I have had too much experience with school personnel that think they are above me. No, I am in charge. I make the decisions for Sam.
This is the end all of end alls, I work for my son. I don't work for Hillside. People say that you have to be accommodating and disgustingly nice in these meetings. I don't have to be nice when I write. I don't have to say that I have to conform to fit their standards. I don't have to and I won't. This is my son that I am fighting for. I am controversial and I keep it real. I want my son safe. I don't want to place him in an institution that is known for not involving the parents. It is a known fact. It said so in the article. This particular institution would not comment on the apparent abuse of this child. I am not surprised.
I have to face facts, I am running on fear. I am also doing this alone. I am scared out of my mind. They don't have a placement for Sam. Hillside is for families that don't have any alternatives. It is with a heavy heart that they place kids in their care and non of them do it lightly. We have a place for Sam. He is wait listed. We will wait.
Definition of Mental
Thanks to Social Media all of this despairing information is available to all of us to share. The latest news was an injury sustained by a child while in a Group Home at our own Hillside Family of Agencies. I say the name out loud because the news is already out and the Group Home wasn't named but Hillside was so I am not ashamed to vocally say what agency it was. I am not ashamed because the school district wants to send my son to a school run by Hillside.
What happened to this child happens to children every day in our country. I won't go in a play by play but basically he was put in a choke hold and sustained substantial bruising. What makes this so very difficult for me is that I worked for Hillside. I worked on their Peaceful Community Initiative to lower the number of restraints in their vast land of services. I was also trained at Hillside which included training to place children in restraints and seclusion rooms. I feel sick on how slow the restraints are made with non disregulated people. They try to have the person come at you full force but face it, there are no real life scenarios happening. People would look at me with fear in their eyes saying, "I don't want to do this." They practiced the restraints anyway. They needed a job, they needed the money. I sat thinking on how much improvement is needed in the training. That was the reason why I was there. My job was to tell Hillside what I thought of the training. My words didn't mean anything. I was probably too controversial. I have to live by my standards and I have to keep it real. That training sucked.
It is called Hillside Family of Agencies. Family of Agencies? Family to who? Think about it....Family...of...Agencies. It is a group of people who work for Hillside and it is their family of workers that they are talking about. I don't know if I need to apologize but this is how I feel about it. I have been involved with schools for the past 7 years that don't want anything to do with me or my family. It is what they believe, what they think Sam needs and it is their policies that they abide by. It is their rules that they stand up for.
Am I angry? I am so angry I can hardly function. My mind is stuck on how to help Sam. It angers me that my advocate from the leading advocacy agency told me that the placement wasn't appropriate. It was this same advocate that said in the school meeting "Hillside, I have never visited Hillside. I would love to visit Hillside." What? Are you kidding me? She told me no to Hillside. She said to me, "That is not an appropriate placement. You ask them what the definition of insanity is and then you wait for their reply. You get the power back in your corner." I can't find the words to express how that feels. I felt duped. I am powerless. Or am I? That is one thing that I haven't figured out yet.
What is the definition of insanity. We all know what it is. It is doing the same thing over and over again without different results. My son needs a multi-sensory approach to education. It says so in his IEP. It was the school district that sat me down and said that they can't force any placement to do what my son needs. Why not? IT IS IN HIS IEP! It is also written that they can restrain him and put him in a seclusion room for 20 minutes. I know that they won't follow the need for a multi sensory approach but they will follow the IEP to restrain him. Restraining him is a far more easy approach than providing the appropriate approach to his educational needs. Nobody can tell me otherwise. I have had too much experience with school personnel that think they are above me. No, I am in charge. I make the decisions for Sam.
This is the end all of end alls, I work for my son. I don't work for Hillside. People say that you have to be accommodating and disgustingly nice in these meetings. I don't have to be nice when I write. I don't have to say that I have to conform to fit their standards. I don't have to and I won't. This is my son that I am fighting for. I am controversial and I keep it real. I want my son safe. I don't want to place him in an institution that is known for not involving the parents. It is a known fact. It said so in the article. This particular institution would not comment on the apparent abuse of this child. I am not surprised.
I have to face facts, I am running on fear. I am also doing this alone. I am scared out of my mind. They don't have a placement for Sam. Hillside is for families that don't have any alternatives. It is with a heavy heart that they place kids in their care and non of them do it lightly. We have a place for Sam. He is wait listed. We will wait.
Definition of Mental
1. a: of, relating to, or being intellectual as contrasted with overt physical activity.
2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.
b: mentally disordered, mad, crazy.
I choose being an intellectual as my definition of being mental.
*The photo that I use for my background was taken by Sam. You can find more of Sam's work at https://www.facebook.com/SnapshotsBySamMaloney
Wednesday, August 14, 2013
What are they thinking?
I really hope this post makes sense. I welcome anyone to add comments because maybe I am missing something. Currently I am dumbfounded on why the Director of Special Education would hand me an educational article that apparently is "ground breaking". For me, there is nothing groundbreaking about the research that she handed me.
I have been doing anything possible to help Sam feel comfortable in any educational setting. I also have been working overtime to educate anyone, in multiple schools he has attended, about how he learns and what is needed for Sam to believe in himself to become educationally successful. My degree is in Education and I was certified K-12 in Biology and Earth Science. I was trained to be an Elementary School Teacher. I taught in Seattle, Washington and I was trained in restraints and I have experienced what it is like to restrain a child and sit with them in a Time Out room that was no bigger than a closet. It is crazy when I think about it. I believe that my higher power was training me for the life that Sam and I are living now. Something pushes me all the time to share our experiences.
I quit teaching for two reasons. Okay, maybe three reasons. First, the teachers that I met didn't really have nice things to say about kids in the lounge. I finally had to each lunch in my room and I was thought of as an outcast. It was just another arena where I did not fit in. Second, a kid pulled a knife on me and I was two months pregnant with Mina. Third, and most important, I believed in alternative education for kids to feel success, therefore, they want to learn more. The administration didn't believe in alterntive ways of learning. I say the third is most important because I didn't feel that the child with the knife would hurt me. It was however, the last day I taught in any classroom.
The article was titled "Mind-Sets and Equitable Education". The first paragraph says, "Much talk about equity in education is about bricks and mortar-about having equal facilities and equal resources." The definition of Equitable is 1: having or exhibiting equity: dealing fairly and equally with all concerned. Most people know what equitable means but when it comes to our kids in special education fair doesn't mean equal. There is an IEP to be individualized to the child's needs.
I am reading the article and it talks about that a teacher and/or student can believe that the students IQ is fixed meaning "They may have a fixed mind set" I just sit in disbelief that it is ground breaking information that it is difficult to "capture the beliefs that administrators, teachers, and students hold-beliefs that can have a striking impact on student's achievement." What? Really? You don't say. Geez, I sat at that school and I knew what their beliefs were about Sam. They believed that he was mentally unstable and he perceived things. They also didn't know what the triggers were. I know that they didn't believe in Sam, they didn't do their homework and they were lazy. That is a little harsh but that is my belief in their ability to understand and to educate my son. I have heard educators say, "What does the parent expect, the child is mentally retarded, this is as good as it gets."
It keeps rolling around in my head on how the Special Ed Director was all smiles handing me this article saying, "I want you to read this." For what reason? I am not the one that believes that my child's IQ is fixed. Nothing in life is fixed. Nothing. It further says, "Recent research has shown that students' mind-sets have a direct influence on their grades and that teaching students to have a growth mind-set raises their grades and achievement test scores significantly." It continues to say, "In addition, studies demonstrate that having a growth mind-set is especially important for students who are laboring under a negative stereotype about their abilities."
I know that anyone reading Sam's reports will have a "fixed mind-set" that Sam "can't" instead of thinking that he can grow and learn in a caring environment. Sam's reports say that he is cognitively disabled and mispercieves his environment and all of this negative crap which will make it difficult to see Sam's potential. How can you not have a "fixed mind-set" that he can't learn. It says so in all of the reports. I am working overtime trying to change wording so educators will have some belief in Sam's abilities to learn.
I further read and everything that they researched is common sense? Or is it? When a college student is learning about how to teach students it would be my hope that they are learning that you don't stereotype kids. I think of my experience of alternative teaching and it brings me to today's educational world where the blame is placed on New York State Curriculum that makes it impossible to instill in a child that they can learn. For me it is all ridiculous. Give Sam a safe place to learn and fill his day with people who believe in him.
While reading I sit in amazement that it is new knowledge that when students were praised for their effort their performance continued to rise. I can say that one of the points the writer was making that it is beneficial to praise for effort instead of praising intelligence. On the flip side it would be destructive to communicate to a child that they were not smart. During my student teaching when I made an alternative learning curriculum for a specific child, the teacher looked at me and said, "Why bother, he is mentally retarded." True story. I made the lesson for him and he completed the entire task. Today I listen to Sam telling me that he is not intelligent enough to be successful. We have intelligent discussions about it. Maybe the Director of Special Education wanted to make it my responsible to change Sam's "mind-set." No it isn't. The education team has to meet me and Sam half way.
In conclusion, it was one of the most ridiculous studies I have read. It is common sense to see human potential in all who enter any educational setting. This is what I do with Sam's photography. I send the message to him that he can learn. I agree that I do say he is smart but I also tell him that he can do it when things get difficult. I also don't back down and I give the encouragement needed to finish the task at hand. As a result, Sam's enjoys his success after the task at hand is completed. This is not new information to be celebrated. I will definitely bring this article to my next CSE meeting and ask them, "What is your "fixed mind-set" about my child.? I am sure that they will all say that there is room for growth. My response will be this, "Put it in all his reports. Rewrite the reports so a stranger reading it will believe in Sam's potential. Put it into their minds that there is potential for significant growth."
Definition of Mental
I have been doing anything possible to help Sam feel comfortable in any educational setting. I also have been working overtime to educate anyone, in multiple schools he has attended, about how he learns and what is needed for Sam to believe in himself to become educationally successful. My degree is in Education and I was certified K-12 in Biology and Earth Science. I was trained to be an Elementary School Teacher. I taught in Seattle, Washington and I was trained in restraints and I have experienced what it is like to restrain a child and sit with them in a Time Out room that was no bigger than a closet. It is crazy when I think about it. I believe that my higher power was training me for the life that Sam and I are living now. Something pushes me all the time to share our experiences.
I quit teaching for two reasons. Okay, maybe three reasons. First, the teachers that I met didn't really have nice things to say about kids in the lounge. I finally had to each lunch in my room and I was thought of as an outcast. It was just another arena where I did not fit in. Second, a kid pulled a knife on me and I was two months pregnant with Mina. Third, and most important, I believed in alternative education for kids to feel success, therefore, they want to learn more. The administration didn't believe in alterntive ways of learning. I say the third is most important because I didn't feel that the child with the knife would hurt me. It was however, the last day I taught in any classroom.
The article was titled "Mind-Sets and Equitable Education". The first paragraph says, "Much talk about equity in education is about bricks and mortar-about having equal facilities and equal resources." The definition of Equitable is 1: having or exhibiting equity: dealing fairly and equally with all concerned. Most people know what equitable means but when it comes to our kids in special education fair doesn't mean equal. There is an IEP to be individualized to the child's needs.
I am reading the article and it talks about that a teacher and/or student can believe that the students IQ is fixed meaning "They may have a fixed mind set" I just sit in disbelief that it is ground breaking information that it is difficult to "capture the beliefs that administrators, teachers, and students hold-beliefs that can have a striking impact on student's achievement." What? Really? You don't say. Geez, I sat at that school and I knew what their beliefs were about Sam. They believed that he was mentally unstable and he perceived things. They also didn't know what the triggers were. I know that they didn't believe in Sam, they didn't do their homework and they were lazy. That is a little harsh but that is my belief in their ability to understand and to educate my son. I have heard educators say, "What does the parent expect, the child is mentally retarded, this is as good as it gets."
It keeps rolling around in my head on how the Special Ed Director was all smiles handing me this article saying, "I want you to read this." For what reason? I am not the one that believes that my child's IQ is fixed. Nothing in life is fixed. Nothing. It further says, "Recent research has shown that students' mind-sets have a direct influence on their grades and that teaching students to have a growth mind-set raises their grades and achievement test scores significantly." It continues to say, "In addition, studies demonstrate that having a growth mind-set is especially important for students who are laboring under a negative stereotype about their abilities."
I know that anyone reading Sam's reports will have a "fixed mind-set" that Sam "can't" instead of thinking that he can grow and learn in a caring environment. Sam's reports say that he is cognitively disabled and mispercieves his environment and all of this negative crap which will make it difficult to see Sam's potential. How can you not have a "fixed mind-set" that he can't learn. It says so in all of the reports. I am working overtime trying to change wording so educators will have some belief in Sam's abilities to learn.
I further read and everything that they researched is common sense? Or is it? When a college student is learning about how to teach students it would be my hope that they are learning that you don't stereotype kids. I think of my experience of alternative teaching and it brings me to today's educational world where the blame is placed on New York State Curriculum that makes it impossible to instill in a child that they can learn. For me it is all ridiculous. Give Sam a safe place to learn and fill his day with people who believe in him.
While reading I sit in amazement that it is new knowledge that when students were praised for their effort their performance continued to rise. I can say that one of the points the writer was making that it is beneficial to praise for effort instead of praising intelligence. On the flip side it would be destructive to communicate to a child that they were not smart. During my student teaching when I made an alternative learning curriculum for a specific child, the teacher looked at me and said, "Why bother, he is mentally retarded." True story. I made the lesson for him and he completed the entire task. Today I listen to Sam telling me that he is not intelligent enough to be successful. We have intelligent discussions about it. Maybe the Director of Special Education wanted to make it my responsible to change Sam's "mind-set." No it isn't. The education team has to meet me and Sam half way.
In conclusion, it was one of the most ridiculous studies I have read. It is common sense to see human potential in all who enter any educational setting. This is what I do with Sam's photography. I send the message to him that he can learn. I agree that I do say he is smart but I also tell him that he can do it when things get difficult. I also don't back down and I give the encouragement needed to finish the task at hand. As a result, Sam's enjoys his success after the task at hand is completed. This is not new information to be celebrated. I will definitely bring this article to my next CSE meeting and ask them, "What is your "fixed mind-set" about my child.? I am sure that they will all say that there is room for growth. My response will be this, "Put it in all his reports. Rewrite the reports so a stranger reading it will believe in Sam's potential. Put it into their minds that there is potential for significant growth."
Definition of Mental
1. a: of, relating to, or being intellectual as contrasted with overt physical activity.
2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.
b: mentally disordered, mad, crazy.
I choose being an intellectual as my definition of being mental.
*The photo that I use for my background was taken by Sam. You can find more of Sam's work at https://www.facebook.com/SnapshotsBySamMaloney
Friday, August 9, 2013
It Isn't Rocket Science
It is 10:00 on a Friday night and I am writing. That fact alone tells the story of my social life. It is non-existent. I met up with an old friend the other day and we hung out at a coffee shop and went to a movie. It was of the opposite sex and we had plans to meet later in the week. He called me and I said, "Hey look, I am so sorry but the school meeting didn't go well. I can't drag you into this mess and you don't deserve to hang out with someone who is not happy." He said, "Thanks" and that was that.
The Committee on Special Education meeting did not go well this week. I have to laugh because I later sat and I cried and put all my thoughts on facebook which is really the social thing to do (I say kiddingly). There is something I must clear up. How I talk on facebook is not how I talk in meetings. My social expression is my thoughts on how I really feel. I act accordingly in meetings with the laughter and the kidding around and all the stuff that makes me literally physically ill when it is finished.
My district is a very large district and there is no possible way that they can know each kid individually or can they? Isn't that what the Committee on Special Education is all about? Isn't it a group effort to oversee a program that works? I get that it is all about money. I also get that it is about the big wig who is breathing down the Chair's neck. I have visions of our Chair sitting in a meeting with their stats on who is placed and who isn't with the side remark, "So how is it going with Mr. Sam Maloney?" With the response, "We have a very involved parent who is making it difficult to place him." I don't really know but I can say that the Chair looks really stressed in our meetings and I always tell him that they couldn't pay me a million dollars to do his job.
My thoughts drift to rocket science. I was curious to know of the origin of the expression, "Well, it isn't rocket science" and this is what I found. It is an idiom that means. "This isn't all that advanced or hard to understand." I also found this, "Rocket technology is thousands of years old. It is Sulfur, saltpeter, and charcoal powder in a tube, which you light and retire. A few tests and a little trigonometry will tell you where it will land. A little calculus and some data on thrust and combustion rates and you can work out the acceleration and the trajectory and everything."
I am wondering if anyone knows where I am going with this? It makes me chuckle because what I want to scream at these meetings is, "You have all of these tests. You have all of this information and you still don't understand my child!" I want to yell at the top of my lungs, "This isn't rocket science!" Or is it?
Us parents know that our children with Autism come from a different operating system. All the neurotypical workers out there, except for the ones with children diagnosed with Autism, don't live this life. How many times have they been trained to watch the videos and read the books that are so thoughtfully produced by so many talented individuals who live this life as a Mac and not a PC. How can you understand something if you don't live it? How do these people come up with any answers to the questions of "What will work for this child." More importantly, "What have we tried again and again that isn't working." It isn't rocket science to know that if it doesn't work come up with a better equation for better outcomes.
Rocket technology is trigonometry and calculus. I don't understand math but I do understand the concept of calculations. You feed in the information to get the answer. Isn't that what Behavior Specialists do? What I got was a piece of paper slid across the table telling me how many behaviors he had. I looked at the piece of paper and said, "What day, time and subjects did these behavior occur? I was met with, "We don't know." "You don't know!" is screaming in my head. The next meeting they slid me the same sheet of paper with the same kind of skeleton information and I slid it back saying, "This is meaningless." I also told them I was pulling Sam because of the abuse that he had endured while he was in their care. Yes, I can be a little you know what. And yes, I did enjoy the look of shock that clearly showed on their faces.
Rocket Technology is also about "a few tests with these calculations to tell you where the rocket will land." All of these tests that we give our kids are given so we can get them to land on their feet when they are 21 to lead productive lives. The tests can include IQ, Auditory processing, Sensory Integration Evaluations, to name a few. Sam's tests were ignored and now they are outdated. They were not looked at and Sam is floating out in space at the moment with no place to land.
So in conclusion, I guess figuring out our kids, for the professionals is rocket science. I guess calculating our kids needs is an arcane science which by definition is, "an adjective known or understood by very few; mysterious; secret; obscure; esoteric. This is a shame. Maybe the professionals should listen more to us parents. To us, figuring out our kids is not, for the purpose of this discussion, rocket science.
The Committee on Special Education meeting did not go well this week. I have to laugh because I later sat and I cried and put all my thoughts on facebook which is really the social thing to do (I say kiddingly). There is something I must clear up. How I talk on facebook is not how I talk in meetings. My social expression is my thoughts on how I really feel. I act accordingly in meetings with the laughter and the kidding around and all the stuff that makes me literally physically ill when it is finished.
My district is a very large district and there is no possible way that they can know each kid individually or can they? Isn't that what the Committee on Special Education is all about? Isn't it a group effort to oversee a program that works? I get that it is all about money. I also get that it is about the big wig who is breathing down the Chair's neck. I have visions of our Chair sitting in a meeting with their stats on who is placed and who isn't with the side remark, "So how is it going with Mr. Sam Maloney?" With the response, "We have a very involved parent who is making it difficult to place him." I don't really know but I can say that the Chair looks really stressed in our meetings and I always tell him that they couldn't pay me a million dollars to do his job.
My thoughts drift to rocket science. I was curious to know of the origin of the expression, "Well, it isn't rocket science" and this is what I found. It is an idiom that means. "This isn't all that advanced or hard to understand." I also found this, "Rocket technology is thousands of years old. It is Sulfur, saltpeter, and charcoal powder in a tube, which you light and retire. A few tests and a little trigonometry will tell you where it will land. A little calculus and some data on thrust and combustion rates and you can work out the acceleration and the trajectory and everything."
I am wondering if anyone knows where I am going with this? It makes me chuckle because what I want to scream at these meetings is, "You have all of these tests. You have all of this information and you still don't understand my child!" I want to yell at the top of my lungs, "This isn't rocket science!" Or is it?
Us parents know that our children with Autism come from a different operating system. All the neurotypical workers out there, except for the ones with children diagnosed with Autism, don't live this life. How many times have they been trained to watch the videos and read the books that are so thoughtfully produced by so many talented individuals who live this life as a Mac and not a PC. How can you understand something if you don't live it? How do these people come up with any answers to the questions of "What will work for this child." More importantly, "What have we tried again and again that isn't working." It isn't rocket science to know that if it doesn't work come up with a better equation for better outcomes.
Rocket technology is trigonometry and calculus. I don't understand math but I do understand the concept of calculations. You feed in the information to get the answer. Isn't that what Behavior Specialists do? What I got was a piece of paper slid across the table telling me how many behaviors he had. I looked at the piece of paper and said, "What day, time and subjects did these behavior occur? I was met with, "We don't know." "You don't know!" is screaming in my head. The next meeting they slid me the same sheet of paper with the same kind of skeleton information and I slid it back saying, "This is meaningless." I also told them I was pulling Sam because of the abuse that he had endured while he was in their care. Yes, I can be a little you know what. And yes, I did enjoy the look of shock that clearly showed on their faces.
Rocket Technology is also about "a few tests with these calculations to tell you where the rocket will land." All of these tests that we give our kids are given so we can get them to land on their feet when they are 21 to lead productive lives. The tests can include IQ, Auditory processing, Sensory Integration Evaluations, to name a few. Sam's tests were ignored and now they are outdated. They were not looked at and Sam is floating out in space at the moment with no place to land.
So in conclusion, I guess figuring out our kids, for the professionals is rocket science. I guess calculating our kids needs is an arcane science which by definition is, "an adjective known or understood by very few; mysterious; secret; obscure; esoteric. This is a shame. Maybe the professionals should listen more to us parents. To us, figuring out our kids is not, for the purpose of this discussion, rocket science.
Definition of Mental
1. a: of, relating to, or being intellectual as contrasted with overt physical activity.
2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.
b: mentally disordered, mad, crazy.
I choose being an intellectual as my definition of being mental.
*The photo that I use for my background was taken by Sam.
Tuesday, August 6, 2013
Maslow's Hierarchy of Needs
What can I say when this actually says it all? So what is my point that I am trying to make? It is simple, make my son feel safe and he will be able to function in a classroom.
I wish the discussion could end at Maslows Hierarchy of Needs because it doesn't feel to me that some people can actually grasp this concept in our nation's classrooms. This is because in our nation's classrooms and especially in our special education classrooms it is all about power. It is "Do as I say and I won't hurt you." I will also add that there are amazing teachers and amazing special ed teachers. For the sake of this discussion, this does not include them.
I am basing this, my own discussion, on what I see on various groups on facebook. I am hit time and time again with images of bruises on our kids. I sit and read in horror on how our kids can be electrocuted to behave. I believe that the only school that uses "aversion shock therapy" is the Judge Rotenberg Center in Massachusetts. It shouldn't be used anywhere.
This is how it works. The kids wear a backpack and it holds the equipment to shock the kid. This particular kid in this photo has two holsters that also hold the equipment to shock the kid. I am not going to go on and on about this practice but to actually have the equipment on their body the entire time they are awake and having to walk around knowing that this equipment on their body can harm them? What must these children think of themselves? I really don't know what else to say. I wish I could come up with something clever but I can't.
My thoughts drift to Sam as an example of the American child with a disability. You can't lump all children together in any category but my point is this, what does my child and every child think of themselves? Do they feel valued? Do they feel good about themselves? Do they know that they are or could be contributing members of society?
I have too many examples of where Sam feels he is not good enough, he doesn't feel smart and he doesn't feel important. That is a shame.
I repeat this over and over again. The national average of kids dying per year in the United States of America is six children. I watched the life drain out my son's eyes after being restrained and put in the seclusion room time and time again. He was voicing that he wanted to harm himself. He actually tried to harm himself. Obviously, me repeating that time and time again isn't going to make much of a difference for our kids. The only thing that I can do is educate.
Why am I talking about this? It is because I sat in my son's pediatrician's office today stating my case that I needed a letter stating that the use of restraints and the use of seclusion closets is not in the best interest of my child. I scratch my head on how it says in his IEP that he can be restrained and put in a seclusion closet for up to twenty minutes. I did not OK that. I would never OK that. I want it out of his IEP and I don't want it in any behavior plan and I don't know how to get it removed. The problem lies in that the pediatrician saw Sam kick a chair when we were talking about how I needed the letter. I asked Sam if he was OK if we talked about it and he said yes and clearly that was not a wise decision. I made a separate appointment without Sam and the doctor said to me, "Well, I am wondering if they are afraid what will happen." Ummm, give the kid hands on, multi-sensory work that caters to his interest and think outside the box. I am a broken record when it comes to how you should teach Sam. Not one single person, except for the idiot Boy Scout Troop leader (sorry he was a boob) is afraid of Sam.
Give Sam food, water, shelter and a safe place to learn that caters to his needs. If he has that maybe, I will say most likely, he will feel a sense of belonging, his self esteem will rise and he will begin to have self-actualization where he believes in himself. It must be true. I say this because if it wasn't true, Maslow's Hierarchy of Needs would not be so well known and would not be used in the extent that it is used to teach others what is needed to be successful. I am sure our special ed teachers have heard about it.
Definition of Mental
1. a: of, relating to, or being intellectual as contrasted with overt physical activity.
2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.
b: mentally disordered, mad, crazy.
I choose being an intellectual as my definition of being mental.
*The photo that I use for my background was taken by Sam.
Friday, July 26, 2013
Equality
I sit at my computer and cry. I am whipped. I am so tired that I can hardly move. The only part of my body that will move is my fingers. My thoughts never stop whirling so I do the only thing I can. I type.
While I type I am listening to the recording, "All representatives are assisting other customers. Please hold the line. Your call is very important to us." I am on hold with the Social Security Administration and I can't leave my phone to do other things. I have been on hold for 30 minutes. In reality it doesn't matter anyway because I am losing my will to do the things that need to get done. I pat myself on the back for at least getting one thing done and that is this particular call is so I don't lose my benefits. I might be holding all day.
So while I sit and listen to the taped message over and over and over, my mind wanders to the subject of equality. What is equality really? It can be said that we all want to be treated as equals. It doesn't matter of sex, creed, religion, choice of who you want to marry or equal pay. My mind wonders to the thought of equality for those with disabilities.
Today is the 23rd Anniversary of the American with Disabilities Act. The ADA was signed into law by President Bush "to eliminate discrimination against citizens with disabilities in the areas of employment, transportation, telecommunications and public accommodations." The underlying theme to me is the act of treating people as equals. My heart sinks because the missing word in this law is education. Where are the civil rights for our kids who are in the school system? I say this because every time Sam was restrained and put in a seclusion room I tried to call the Center for Disability Rights and was told, "I am sorry, we can't help you."
This entire train of thought started while watching the movie Lincoln and I listened to the words during this particular scene of the film, "Do we choose to be born? Are we fitted into the times we are born into?" My brain starts churning as I continue to hear, "Have you ever heard of Euclid's Axions and Common Notions? Euclid said that it is the self evident truth that things which are equal to the same thing are equal to each other. We became with equality, it is the origin that is balance, that is fairness, that is justice."
I don't know much about Euclid but I guess his discovery is very important. In reality I have no clue what I am talking about. I don't know anything about mathematics, mechanics or anything related to engineering. What perked my ears was, "things which are equal to the same thing are equal to each other." It is self evident that the film was making the point that Lincoln thought that all races were equal.
Again, I think of Sam with his disability. He was born into this world with the American right to be treated equal. But is he really being treated as an equal and an equal to who? We are all different. Am I asking for him to be treated equally in the education setting? Well, if he was truly an equal he would have to be treated equal which means he wouldn't get the services that he receives. When he turns 21 I am going to fight as hard as I can for him to receive a job coach. Do all people receive job coaches? Obviously, no they don't.
Lincoln fought to abolish slavery. The film was successful in humanizing a man who wanted equality. The people who sat and protested for the Civil Rights Law were the same kind of thinkers as Lincoln. I am the same thinker as these folks. For me it isn't about equality. It is about civil rights and we all have them. My son has them. I will make sure that his civil rights are enforced whether it is written somewhere or not. I have so much to learn and maybe someone knows where it says that my child has civil rights to be treated fairly in the education system. Restraints and Seclusions and the use of brute force is not fair.
I had one more thought about equality. Sam and I live in the United States of America which is the melting pot of all cultures. Individuals diagnosed with Autism are forming their own culture. If you think about it, this makes sense because one in 150 are diagnosed with Autism. That is a lot of folks who are trying to be treated fairly. This is not only a United States issue, it is a world issue. How many times does the Autism Culture say that Autism is like a Mac compared to a PC. It is a different operating system. It is Temple Grandin who coined the phrase, "Different not less."
I conclude with the question of equality. How can Sam be an equal if he is different? It is Sam's civil rights that I am concerned about.
In fairness I will say that the equality that I will fight for is for Sam to be treated equally as in equal pay, equal rights as in the right to vote, ect.
In the film, Lincoln asked if we are fitted into the times we are born into. I sure do hope so. It is my fight for my son to have civil rights and equal rights in the classroom. He has an equal right to be treated justly and fairly among all the other children in the education system.
While I type I am listening to the recording, "All representatives are assisting other customers. Please hold the line. Your call is very important to us." I am on hold with the Social Security Administration and I can't leave my phone to do other things. I have been on hold for 30 minutes. In reality it doesn't matter anyway because I am losing my will to do the things that need to get done. I pat myself on the back for at least getting one thing done and that is this particular call is so I don't lose my benefits. I might be holding all day.
So while I sit and listen to the taped message over and over and over, my mind wanders to the subject of equality. What is equality really? It can be said that we all want to be treated as equals. It doesn't matter of sex, creed, religion, choice of who you want to marry or equal pay. My mind wonders to the thought of equality for those with disabilities.
Today is the 23rd Anniversary of the American with Disabilities Act. The ADA was signed into law by President Bush "to eliminate discrimination against citizens with disabilities in the areas of employment, transportation, telecommunications and public accommodations." The underlying theme to me is the act of treating people as equals. My heart sinks because the missing word in this law is education. Where are the civil rights for our kids who are in the school system? I say this because every time Sam was restrained and put in a seclusion room I tried to call the Center for Disability Rights and was told, "I am sorry, we can't help you."
This entire train of thought started while watching the movie Lincoln and I listened to the words during this particular scene of the film, "Do we choose to be born? Are we fitted into the times we are born into?" My brain starts churning as I continue to hear, "Have you ever heard of Euclid's Axions and Common Notions? Euclid said that it is the self evident truth that things which are equal to the same thing are equal to each other. We became with equality, it is the origin that is balance, that is fairness, that is justice."
I don't know much about Euclid but I guess his discovery is very important. In reality I have no clue what I am talking about. I don't know anything about mathematics, mechanics or anything related to engineering. What perked my ears was, "things which are equal to the same thing are equal to each other." It is self evident that the film was making the point that Lincoln thought that all races were equal.
Again, I think of Sam with his disability. He was born into this world with the American right to be treated equal. But is he really being treated as an equal and an equal to who? We are all different. Am I asking for him to be treated equally in the education setting? Well, if he was truly an equal he would have to be treated equal which means he wouldn't get the services that he receives. When he turns 21 I am going to fight as hard as I can for him to receive a job coach. Do all people receive job coaches? Obviously, no they don't.
Lincoln fought to abolish slavery. The film was successful in humanizing a man who wanted equality. The people who sat and protested for the Civil Rights Law were the same kind of thinkers as Lincoln. I am the same thinker as these folks. For me it isn't about equality. It is about civil rights and we all have them. My son has them. I will make sure that his civil rights are enforced whether it is written somewhere or not. I have so much to learn and maybe someone knows where it says that my child has civil rights to be treated fairly in the education system. Restraints and Seclusions and the use of brute force is not fair.
I had one more thought about equality. Sam and I live in the United States of America which is the melting pot of all cultures. Individuals diagnosed with Autism are forming their own culture. If you think about it, this makes sense because one in 150 are diagnosed with Autism. That is a lot of folks who are trying to be treated fairly. This is not only a United States issue, it is a world issue. How many times does the Autism Culture say that Autism is like a Mac compared to a PC. It is a different operating system. It is Temple Grandin who coined the phrase, "Different not less."
I conclude with the question of equality. How can Sam be an equal if he is different? It is Sam's civil rights that I am concerned about.
In fairness I will say that the equality that I will fight for is for Sam to be treated equally as in equal pay, equal rights as in the right to vote, ect.
In the film, Lincoln asked if we are fitted into the times we are born into. I sure do hope so. It is my fight for my son to have civil rights and equal rights in the classroom. He has an equal right to be treated justly and fairly among all the other children in the education system.
Definition of Mental
1. a: of, relating to, or being intellectual as contrasted with overt physical activity.
2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.
b: mentally disordered, mad, crazy.
I choose being an intellectual as my definition of being mental.
*The photo that I use for my background was taken by Sam.
Wednesday, July 24, 2013
The East vs. The West
I grew up in what would of been considered the "Upper Middle Class". Today, I am definitely in the "Lower Poverty Class" if a "Class" system really existed which it doesn't. The "Class" system just exists in our minds and it is how we still classify people. We even classify people as "White Trash" which really isn't nice just because a person is poor.
With that being said, I live in a city that is divided by the Genessee River. There is the East Side and the West Side. Think of the West Side Story and that is our city, especially in the Autism Community.
After I recovered from Cancer I was isolated and alone in my family's world of Autism which included Sam, Mina and me. I desperately wanted friends. I joined my Autism group which consisted of women and I drove to the East Side of the city to do my part in the fight for Autism. It didn't matter what the fight was about, I wanted to be there to be part of it all. It didn't matter what committee I needed to be in and I was there ready. I was there ready until I finally realized that I wasn't an East Side Mom of Autism. I wasn't in the Sorority.
It most likely sounds like I am moaning and groaning. I imagine people shouting into their computer screen, "Get over it Woman!" It boils down to one thing. I got hurt. I tried and tried and tried again to put myself out there and I finally had to quit. My son is going through a situation that no child should go through with the restraints and seclusions and the help isn't there. It devastated me that I asked a woman to attend an IEP meeting to be told, in not so many words, that it wasn't part of her job description. It wasn't what she said exactly but I got the point. My problem was that I asked her as a friend. I am a Westsider, she is not my friend.
I think the funniest memory I have that cracks me up is what someone once said to me at a meeting. To set the story up I must explain that all my money goes into my kids. When you only get so much you do what you can. I don't have a lot of nice things to wear and I tend to wear the same thing over and over again because I don't spend the money on myself. I remember the woman standing next to me sneering saying, "Your clothes, you need to do something about your pants." Ha! I wish my pants were my biggest worry. There was one other time that a woman brought an entire bowl of raspberries and blackberries to a meeting and I just stared at that bowl thinking, "Wow, that must of cost a lot of money." They were delicious by the way. I have dreams of being able to afford them to sprinkle some sugar on them and taste the goodness. I will always remember that bowl of yummy fruit.
So why am I talking about these woman? I just desperately need to get it off my chest or it might just kill me in a literal way. Stress is a killer and I have already fought depression and cancer and won. I also think that maybe people would have a better understanding of how Autism isn't just for the rich. It is difficult to listen to people talk about the therapies they paid for and the education they paid for and the gluten free food that they paid for. I can't afford any of that. It is even worse to sit and listen about their vacations to whatever resort they are spending time at. I am not talking about any particular person, I am talking about anyone that is more fortunate than me and my family. I wish I could be happy for the more fortunate ones. Sometimes I feel this stabbing pain in my chest where my heart hurts so bad because I can't do more for Sam.. I selfishly say that it hurts me even more to know that I am not in the "in" Autism group.
Here is the clincher. I have the deepest respect for these woman. What they do is amazing. What they fight for is admirable. They spend hours upon hours doing what they do and they do it well. We all are walking in the same line. The lines just happen to be parallel on opposite sides of the city.
Another difference is that they are educators and I am an activist. I get angry and I let people know in the nicest way possible. I am not afraid to carry signs and walk on the street corner. I am not too sure if I could yell into a bullhorn but I could stop and talk to people on the street and hand out flyers. I would be good at that. I start groups on facebook and I invite everyone in my Autism Community and I post whatever I can with responses from my fellow activist from California, Ohio, New York City and even Canada. I have seen e-cards that say that "In my Autism world all of my friends are in a computer." I just wish I had more in my backyard that would stand on my street corner with me. My New York City friend will, she has already informed me and I think that is the coolest gesture anyone has ever made on my behalf. I will stand on any street corner with her yelling into our bull horns to stop the abuse.
Why is all of this on my mind? My son goes to the Autism Camp on the East Side. Sam was given a scholarship. The Autism Camp is probably one of the best Autism Camps in the world. It is an inclusion setting and Sam thrives from amazing workers that expertly run the Autism side of the camp. I have these woman to thank for that too. I just wish I was part of their Sorority. It is difficult to pick up my child and stand side by side with another person with a glass wall between us having nothing to say. It makes me sad.
Do I have friends? You betcha! I have the best kind of friends that I am extremely thankful for. I am thinking that I just need to get over myself.
With that being said, I live in a city that is divided by the Genessee River. There is the East Side and the West Side. Think of the West Side Story and that is our city, especially in the Autism Community.
After I recovered from Cancer I was isolated and alone in my family's world of Autism which included Sam, Mina and me. I desperately wanted friends. I joined my Autism group which consisted of women and I drove to the East Side of the city to do my part in the fight for Autism. It didn't matter what the fight was about, I wanted to be there to be part of it all. It didn't matter what committee I needed to be in and I was there ready. I was there ready until I finally realized that I wasn't an East Side Mom of Autism. I wasn't in the Sorority.
It most likely sounds like I am moaning and groaning. I imagine people shouting into their computer screen, "Get over it Woman!" It boils down to one thing. I got hurt. I tried and tried and tried again to put myself out there and I finally had to quit. My son is going through a situation that no child should go through with the restraints and seclusions and the help isn't there. It devastated me that I asked a woman to attend an IEP meeting to be told, in not so many words, that it wasn't part of her job description. It wasn't what she said exactly but I got the point. My problem was that I asked her as a friend. I am a Westsider, she is not my friend.
I think the funniest memory I have that cracks me up is what someone once said to me at a meeting. To set the story up I must explain that all my money goes into my kids. When you only get so much you do what you can. I don't have a lot of nice things to wear and I tend to wear the same thing over and over again because I don't spend the money on myself. I remember the woman standing next to me sneering saying, "Your clothes, you need to do something about your pants." Ha! I wish my pants were my biggest worry. There was one other time that a woman brought an entire bowl of raspberries and blackberries to a meeting and I just stared at that bowl thinking, "Wow, that must of cost a lot of money." They were delicious by the way. I have dreams of being able to afford them to sprinkle some sugar on them and taste the goodness. I will always remember that bowl of yummy fruit.
So why am I talking about these woman? I just desperately need to get it off my chest or it might just kill me in a literal way. Stress is a killer and I have already fought depression and cancer and won. I also think that maybe people would have a better understanding of how Autism isn't just for the rich. It is difficult to listen to people talk about the therapies they paid for and the education they paid for and the gluten free food that they paid for. I can't afford any of that. It is even worse to sit and listen about their vacations to whatever resort they are spending time at. I am not talking about any particular person, I am talking about anyone that is more fortunate than me and my family. I wish I could be happy for the more fortunate ones. Sometimes I feel this stabbing pain in my chest where my heart hurts so bad because I can't do more for Sam.. I selfishly say that it hurts me even more to know that I am not in the "in" Autism group.
Here is the clincher. I have the deepest respect for these woman. What they do is amazing. What they fight for is admirable. They spend hours upon hours doing what they do and they do it well. We all are walking in the same line. The lines just happen to be parallel on opposite sides of the city.
Another difference is that they are educators and I am an activist. I get angry and I let people know in the nicest way possible. I am not afraid to carry signs and walk on the street corner. I am not too sure if I could yell into a bullhorn but I could stop and talk to people on the street and hand out flyers. I would be good at that. I start groups on facebook and I invite everyone in my Autism Community and I post whatever I can with responses from my fellow activist from California, Ohio, New York City and even Canada. I have seen e-cards that say that "In my Autism world all of my friends are in a computer." I just wish I had more in my backyard that would stand on my street corner with me. My New York City friend will, she has already informed me and I think that is the coolest gesture anyone has ever made on my behalf. I will stand on any street corner with her yelling into our bull horns to stop the abuse.
Why is all of this on my mind? My son goes to the Autism Camp on the East Side. Sam was given a scholarship. The Autism Camp is probably one of the best Autism Camps in the world. It is an inclusion setting and Sam thrives from amazing workers that expertly run the Autism side of the camp. I have these woman to thank for that too. I just wish I was part of their Sorority. It is difficult to pick up my child and stand side by side with another person with a glass wall between us having nothing to say. It makes me sad.
Do I have friends? You betcha! I have the best kind of friends that I am extremely thankful for. I am thinking that I just need to get over myself.
Definition of Mental
1. a: of, relating to, or being intellectual as contrasted with overt physical activity.
2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.
b: mentally disordered, mad, crazy.
I choose being an intellectual as my definition of being mental.
*The photo that I use for my background was taken by Sam.
Wednesday, July 17, 2013
Missing the Meds
This post really isn't about what I went through but what I am going through right now. This post is about what all Mental Health clients go through. Just like everything else, it is the system that is broken not the individual people in it. Well, not all people.
For the past two and a half years, since recovering from the debilitating depression after cancer, I have fought to get a new counselor at my clinic. When I first arrived at the clinic over 7 years ago I was struggling. I wasn't comfortable with the person I was sitting across from and when I asked for a new one I was assigned to Jason. Making a long story a little bit shorter, I was diagnosed with cancer at the same time he was leaving the clinic. They put me back with the original counselor.
I was so sick when the change was made that I didn't fight it. The years past, I got better and I was sitting across a person who made me angry. There is a rule in our clinic that you have to arrive 10 minutes early to be seen. She would make me wait 20 minutes past the appointment time and my blood would boil. My time is very important to me. I advocated for myself and asked for a new counselor. I was met with, "Well, the entire team would have to meet to discuss it" and "there is no guarantee you will like the new counselor". I am thinking that the chances of liking the new counselor compared to her would be very high. I pride myself on being a nice person but I just didn't like her, at all.
I stopped going to my appointments. It was a stupid thing to do. I could of sworn that the psychiatrist said I could just make an appointment with him to get my medications. I was wrong and they kicked me out. They were kind enough to give me one more appointment with the psychiatrist who just took over my own assigned psychiatrist. He looks at my list of medications and says, "You don't have to be on Lamictal and Seroquel at the same time. The studies show that there are long term side effects with the Seroquel." Sam's prescriber has told me this and we are reducing the Seroquel for Sam. I didn't make the connection that I might be true for me also.
Again, trying my best to make a long story a little shorter, I fought for a new counselor so I could see this particular psychiatrist so I could lower my Seroquel. That makes sense, right? This guy told me something that made me very nervous and I wanted to change it so I would feel more comfortable about my medical situation. I asked an advocate to go with me and at the time of the appointment and she was a little late.
What happened at this appointment floored me. I sat down and there were two people, the bad cop and the good cop. The bad cop asked me why I didn't like my counselor. What was I supposed to say? I felt cornered and I asked to wait for my advocate. I tried to talk and all that came out was, "I don't like her."
"Why don't you like her?" What was I supposed to say, "Ummm, because I think she is a b@#%." That was the entire problem really. I didn't like her attitude. I didn't like how she made me wait 30 minutes to see her. I thought it was rude. That was really what I should of said but I panicked and said, "I don't like the way she sits. I don't like the way she talks." I was going into fight or flight and I was becoming panic stricken and I was finding it hard to breath. It was this exact moment that the advocate came in out of breath apologizing all over the place. I got up, hugged her and told her how thankful I was that she was there.
After deliberating my wishes, the good cop said, "It seems to me that you have had to fight for everything you have ever had." The good cop got me and I received a new counselor. The deal was that if I missed one appointment I was out. They also told me that I would have to get a couple of months of medications from my primary doctor. I was also told that I wouldn't be able to see the same psychiatrist who said he would help me get off the Seroquel.
A couple of weeks passed and I talked with my primary doctor and she prescribed my medications. I wasn't 100% positive on the dose of the one and I told her I would call her nurse. I have a horrible time with procrastination and I forgot to call.
I have had two appointments with my new counselor and she said it would be months to see a new psychiatrist. She also said that she isn't sure I need therapy. WHAT? I don't need therapy? UMMM, I am living this life with Autism and the stressors are enouth to kill. Stress is a killer right? Am I missing something? I was talking and I was saying that I finally have friends and that makes me happy. The counselor said that maybe I didn't need therapy and I could share my problems with my friends. WHAT? Share my problems with my friends? What friend wants to be dumped on again and again. True, my friends are phenomenal listeners but geez, really? When I was sick all those years undiagnosed with Bipolar they got sick of me and dumped me. I don't blame them. Now that I am healthy aren't you supposed to get rid of the unhealthy ones who bring you down? She also told me I didn't have Bipolar. It was all normal stressors. I have been hospitalized so many times from talking myself off my medications. People with Bipolar are the most likely to take themselves off their medications. It is a researched fact.
All I am thinking is, "Why am I staying here?" There are many reasons why I will stay and it all resolves around my safety. I was once admitted to an emergency room for restless leg syndrome and they put me in the psych ward. This was about a year ago. They called the counselor that I didn't like. The one that I missed all of those appointments and they almost didn't let me out. True story. This situation also led me to be interrogated by Child Protective Service for three months.
This all leads me to today. I procrastinated to call my primary about the other medication. Procrastination is one of my goals that I want to work on with my therapist. I woke up shaking, scared out of my mind, and I new that the Bipolar was kicking in because I have been off the one med for a couple of weeks. I was just thinking yesterday that I was feeling great and maybe I didn't need it. "Yeah, I don't have Biplar", I say sarcastically.
I called my primary doctor and talked to the nurse. I told the nurse to tell the doctor how sorry I was that I procrastinated. I asked her if she wouldn't mind if she could hurry because I wasn't feeling well. I love my doctor. I wish my doctor was my therapist. Oh well.
I believe that the number one reason I should be allowed to continue to receive therapeutic services is to stay well. If I am not well, there is almost a certain guarantee that I would loose Sam. Having a psychiatric diagnosis is grounds for losing custody of your child. I know because when Sam was little I sat in a court of Law fighting for my right to raise Sam. I won. I was also well at the time.
For the past two and a half years, since recovering from the debilitating depression after cancer, I have fought to get a new counselor at my clinic. When I first arrived at the clinic over 7 years ago I was struggling. I wasn't comfortable with the person I was sitting across from and when I asked for a new one I was assigned to Jason. Making a long story a little bit shorter, I was diagnosed with cancer at the same time he was leaving the clinic. They put me back with the original counselor.
I was so sick when the change was made that I didn't fight it. The years past, I got better and I was sitting across a person who made me angry. There is a rule in our clinic that you have to arrive 10 minutes early to be seen. She would make me wait 20 minutes past the appointment time and my blood would boil. My time is very important to me. I advocated for myself and asked for a new counselor. I was met with, "Well, the entire team would have to meet to discuss it" and "there is no guarantee you will like the new counselor". I am thinking that the chances of liking the new counselor compared to her would be very high. I pride myself on being a nice person but I just didn't like her, at all.
I stopped going to my appointments. It was a stupid thing to do. I could of sworn that the psychiatrist said I could just make an appointment with him to get my medications. I was wrong and they kicked me out. They were kind enough to give me one more appointment with the psychiatrist who just took over my own assigned psychiatrist. He looks at my list of medications and says, "You don't have to be on Lamictal and Seroquel at the same time. The studies show that there are long term side effects with the Seroquel." Sam's prescriber has told me this and we are reducing the Seroquel for Sam. I didn't make the connection that I might be true for me also.
Again, trying my best to make a long story a little shorter, I fought for a new counselor so I could see this particular psychiatrist so I could lower my Seroquel. That makes sense, right? This guy told me something that made me very nervous and I wanted to change it so I would feel more comfortable about my medical situation. I asked an advocate to go with me and at the time of the appointment and she was a little late.
What happened at this appointment floored me. I sat down and there were two people, the bad cop and the good cop. The bad cop asked me why I didn't like my counselor. What was I supposed to say? I felt cornered and I asked to wait for my advocate. I tried to talk and all that came out was, "I don't like her."
"Why don't you like her?" What was I supposed to say, "Ummm, because I think she is a b@#%." That was the entire problem really. I didn't like her attitude. I didn't like how she made me wait 30 minutes to see her. I thought it was rude. That was really what I should of said but I panicked and said, "I don't like the way she sits. I don't like the way she talks." I was going into fight or flight and I was becoming panic stricken and I was finding it hard to breath. It was this exact moment that the advocate came in out of breath apologizing all over the place. I got up, hugged her and told her how thankful I was that she was there.
After deliberating my wishes, the good cop said, "It seems to me that you have had to fight for everything you have ever had." The good cop got me and I received a new counselor. The deal was that if I missed one appointment I was out. They also told me that I would have to get a couple of months of medications from my primary doctor. I was also told that I wouldn't be able to see the same psychiatrist who said he would help me get off the Seroquel.
A couple of weeks passed and I talked with my primary doctor and she prescribed my medications. I wasn't 100% positive on the dose of the one and I told her I would call her nurse. I have a horrible time with procrastination and I forgot to call.
I have had two appointments with my new counselor and she said it would be months to see a new psychiatrist. She also said that she isn't sure I need therapy. WHAT? I don't need therapy? UMMM, I am living this life with Autism and the stressors are enouth to kill. Stress is a killer right? Am I missing something? I was talking and I was saying that I finally have friends and that makes me happy. The counselor said that maybe I didn't need therapy and I could share my problems with my friends. WHAT? Share my problems with my friends? What friend wants to be dumped on again and again. True, my friends are phenomenal listeners but geez, really? When I was sick all those years undiagnosed with Bipolar they got sick of me and dumped me. I don't blame them. Now that I am healthy aren't you supposed to get rid of the unhealthy ones who bring you down? She also told me I didn't have Bipolar. It was all normal stressors. I have been hospitalized so many times from talking myself off my medications. People with Bipolar are the most likely to take themselves off their medications. It is a researched fact.
All I am thinking is, "Why am I staying here?" There are many reasons why I will stay and it all resolves around my safety. I was once admitted to an emergency room for restless leg syndrome and they put me in the psych ward. This was about a year ago. They called the counselor that I didn't like. The one that I missed all of those appointments and they almost didn't let me out. True story. This situation also led me to be interrogated by Child Protective Service for three months.
This all leads me to today. I procrastinated to call my primary about the other medication. Procrastination is one of my goals that I want to work on with my therapist. I woke up shaking, scared out of my mind, and I new that the Bipolar was kicking in because I have been off the one med for a couple of weeks. I was just thinking yesterday that I was feeling great and maybe I didn't need it. "Yeah, I don't have Biplar", I say sarcastically.
I called my primary doctor and talked to the nurse. I told the nurse to tell the doctor how sorry I was that I procrastinated. I asked her if she wouldn't mind if she could hurry because I wasn't feeling well. I love my doctor. I wish my doctor was my therapist. Oh well.
I believe that the number one reason I should be allowed to continue to receive therapeutic services is to stay well. If I am not well, there is almost a certain guarantee that I would loose Sam. Having a psychiatric diagnosis is grounds for losing custody of your child. I know because when Sam was little I sat in a court of Law fighting for my right to raise Sam. I won. I was also well at the time.
Definition of Mental
1. a: of, relating to, or being intellectual as contrasted with overt physical activity.
2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.
b: mentally disordered, mad, crazy.
I choose being an intellectual as my definition of being mental.
*The photo that I use for my background was taken by Sam.
Saturday, June 15, 2013
When It Is Time To Bow Out
Groups are difficult for Sam. This is one of our most recent experiences in a group activity...
"You can't tell me what to do!" I am sitting a few feet away and my ears tune in.
"Don't look at me!" Still sitting, my full attention is on Sam while he is shouting at some boys. I sit with the woman who is taking my money for camping and she says nothing.
"Stop looking at me!" Now everyone's ears are tuned in.
"It isn't funny!" I look and nobody is laughing
"I can't stand this!" I get up to intervene.
The first thing I did was sit in Sam's line of sight to block out the stimuli. The most wonderful woman in the world is sitting next to me and she said to me, "Wow, why didn't I think of that."
The kids go to the front of the very big room and all Sam wanted to do was to go home. We couldn't leave until the ending ceremony. The leader of the group, who recently took over leadership, came up to me and said, "I am worried about camp because it is 16 campers to 5 adults." Instantly I knew that he was implying, "We don't know what to do with Sam."
The stimulus was too much and other people's knowledge of Sam's disability was too little. I sat there and knew that I had to pull Sam out of this group.
Just like the principal makes the school, the teacher makes the class and the leader makes the group. It is nobody fault that the leader of the group, that recently resigned, was more aware of disabilities. This is the thing, the leadership went from superb to good. Again, nobody's fault. In a matter of a few weeks Sam was voicing that he didn't want to attend. He knew he wasn't accepted. He told me that people didn't like him.
Memories crash in. Because of my mental heath, I wasn't accepted when I was young and I certainly didn't fit in. I remember as a little girl, a group of kids decided that in order to join the group you had to jump out of the tree. Maybe that truly was the initiation or they knew I would be too afraid to jump out of the tree. I had to go home.
Where do my memories and Sam's experience make any sense? How do I know what really is reality? All of these experiences, his and mine, are thrown into a whirlpool where thoughts, memories, experiences are all jumbled together in a chaotic mess.
My job is to protect Sam. My job is also to allow him to experience life. Sam was slamming his feet and covering his ears with this look on his face that clearly communicated to me that he was in physical pain. Sensory integration is real and it hurts. Anyone can read any autobiography from any person with Autism and they will tell their story of their sensory integration disorder. I reiterate, it is a reality for our loved ones with Autism.
I sit with Sam and I continue to experience the crashing of thoughts and feel the pain of hurtful memories. "You need to beat that child!" and "If that was my child he would know who was boss!" I can't shake the most hurtful memory, "You need to leave the store, you can't stay here." Yes, my child was running frantically up and down the isles. Yes, my child didn't have any shoes on. All I wanted was for someone to help me grab my groceries so I could scoop up my child. All I got was stares. This all happened in one of leading grocery chains in the country. While stroking Sam's arm to comfort him, I wonder if this is what people are thinking.
The end result was that I did pull my child from the group. I also got a refund for the camp. I will probably tell Sam that this group doesn't meet during the summer and it is a school year activity. There is another group that Sam participates in that ends for the summer. I am not entirely sure but he might not ask at all. Sam is a "what are we doing right here and right now" kind of kid. Sam lives in the moment.
I think of the positive. I met the most wonderful woman that was a co-leader of the group. I am thankful that I met her. She adored Sam and Sam adored her. Sam felt accepted.
So I leave with this thought. Was it my responsibility to stay in this group to try to educate them about Autism? I personally don't think so. Was it my responsibility to keep Sam in the group to teach him about living while feeling extremely uncomfortable? Maybe some would argue that I am not doing him any favors. I really don't know the answers to these questions. Sam is wired differently because of his Autism. I am am doing my best to teach him that he is "different not less".
"You can't tell me what to do!" I am sitting a few feet away and my ears tune in.
"Don't look at me!" Still sitting, my full attention is on Sam while he is shouting at some boys. I sit with the woman who is taking my money for camping and she says nothing.
"Stop looking at me!" Now everyone's ears are tuned in.
"It isn't funny!" I look and nobody is laughing
"I can't stand this!" I get up to intervene.
The first thing I did was sit in Sam's line of sight to block out the stimuli. The most wonderful woman in the world is sitting next to me and she said to me, "Wow, why didn't I think of that."
The kids go to the front of the very big room and all Sam wanted to do was to go home. We couldn't leave until the ending ceremony. The leader of the group, who recently took over leadership, came up to me and said, "I am worried about camp because it is 16 campers to 5 adults." Instantly I knew that he was implying, "We don't know what to do with Sam."
The stimulus was too much and other people's knowledge of Sam's disability was too little. I sat there and knew that I had to pull Sam out of this group.
Just like the principal makes the school, the teacher makes the class and the leader makes the group. It is nobody fault that the leader of the group, that recently resigned, was more aware of disabilities. This is the thing, the leadership went from superb to good. Again, nobody's fault. In a matter of a few weeks Sam was voicing that he didn't want to attend. He knew he wasn't accepted. He told me that people didn't like him.
Memories crash in. Because of my mental heath, I wasn't accepted when I was young and I certainly didn't fit in. I remember as a little girl, a group of kids decided that in order to join the group you had to jump out of the tree. Maybe that truly was the initiation or they knew I would be too afraid to jump out of the tree. I had to go home.
Where do my memories and Sam's experience make any sense? How do I know what really is reality? All of these experiences, his and mine, are thrown into a whirlpool where thoughts, memories, experiences are all jumbled together in a chaotic mess.
My job is to protect Sam. My job is also to allow him to experience life. Sam was slamming his feet and covering his ears with this look on his face that clearly communicated to me that he was in physical pain. Sensory integration is real and it hurts. Anyone can read any autobiography from any person with Autism and they will tell their story of their sensory integration disorder. I reiterate, it is a reality for our loved ones with Autism.
I sit with Sam and I continue to experience the crashing of thoughts and feel the pain of hurtful memories. "You need to beat that child!" and "If that was my child he would know who was boss!" I can't shake the most hurtful memory, "You need to leave the store, you can't stay here." Yes, my child was running frantically up and down the isles. Yes, my child didn't have any shoes on. All I wanted was for someone to help me grab my groceries so I could scoop up my child. All I got was stares. This all happened in one of leading grocery chains in the country. While stroking Sam's arm to comfort him, I wonder if this is what people are thinking.
The end result was that I did pull my child from the group. I also got a refund for the camp. I will probably tell Sam that this group doesn't meet during the summer and it is a school year activity. There is another group that Sam participates in that ends for the summer. I am not entirely sure but he might not ask at all. Sam is a "what are we doing right here and right now" kind of kid. Sam lives in the moment.
I think of the positive. I met the most wonderful woman that was a co-leader of the group. I am thankful that I met her. She adored Sam and Sam adored her. Sam felt accepted.
So I leave with this thought. Was it my responsibility to stay in this group to try to educate them about Autism? I personally don't think so. Was it my responsibility to keep Sam in the group to teach him about living while feeling extremely uncomfortable? Maybe some would argue that I am not doing him any favors. I really don't know the answers to these questions. Sam is wired differently because of his Autism. I am am doing my best to teach him that he is "different not less".
Definition of Mental
1. a: of, relating to, or being intellectual as contrasted with overt physical activity.
2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.
b: mentally disordered, mad, crazy.
I choose being an intellectual as my definition of being mental.
*The photo that I use for my background was taken by Sam.
Friday, May 31, 2013
The Meeting
My hands are trembling. I look down and see that familiar wiggling of paper that is being held by my uncooperative extremities while willing my body to stop. I feel that familiar buzzing in my head and I know they can see me shake. "You can do this! You can do this!" is drumming in my head. Finally I am defeated. I can't do this! I am trapped! I am an animal with no way out except to attack. I AM OUT OF HERE!
If someone was to ask me to write a quick synopsis of this mornings meeting, the above is what I would have to say. The meeting didn't go well, not even a little bit.
When Sam was little, he and I were bullied by a group of Moms at our low income place that resembled my perception of hell. They used to dump dirty diapers under my window and call management. They also would teach their young kids to beat on Sam. I made a meeting to try to have the establishment help me and they organized their attack ahead of time planning on how they would band together to make me the villain. This is the flashback I was having while I was staring at a piece of paper that the school got together in advance to plan what they would say so Sam and myself had no voice.
Concerns of 12:1:1 team
1. Student safety and safety of others.
2. Disruptive and dangerous behaviors which include; yelling, screaming, crying, ...... I don't need to continue on this one.
3. Aggression toward peers and staff
4. Self-injurious behaviors
5. Bolting
6. Blocking entrances/exits
7. Unpredictable behavior triggered by apparent mood swings
8. Intensity and duration of outbursts
9. Sleeping
10. Student complaint of tremendous sadness
11. Inability to take any adult direction
12. Inability to complete any kind of academic work.
Student Needs
1. Full time mental health
2. 1:1 paraprofessional assistance
3. Autism hours
4. Time out/calm room
5. Asssistive Technology
The rest of the paper said what they tried and it listed around 30 items. There was no possible way they could have tried all of these things in such a short amount of time.
This is the paper I was holding while my body was starting to go into fight or flight.
How does someone respond to this? He needs the Time Out Room AKA Seclusion Room? They forgot to list he needs to be restrained because Sam would never just walk calmly to a time out room when he feels he is backed into a corner.
This is what Sam tells me about restraints and the use of seclusion rooms. "Mom, I am bad because they tell me I am bad." What they say is, I am supposing, "Sam if you made better choices these bad things would not happen." My son has Autism and his brain is wired differently. My son is also 95% successful in the community. Anybody that follows us knows that Sam is not a violent person nor is anyone afraid of him. He doesn't swear and he doesn't break anything in the home. The last thing he added about his new school is that he confided in me that the social worker would scream at him saying, "HOW DO YOU LIKE IT WHEN SOMEONE IS SCREAMING AT YOU!"
The reality is this. There is no place for Sam.
So I sat in the meeting and they made their attack. I attacked back saying that it is the educational system that has abused Sam to the point where school is a trigger and he continually went into fight or flight. I tried to make my argument that they had an outdated Fuctional Behavioral Analysis and all the Behavioral Intervention Plan says is to give him three warnings and if he doesn't comply he is restrained and put into time out.
We had three formal allegations of abuse last year against a school where multiple people have contacted me telling me about their child's bruises. It is sickening.
The ending point of the meeting is when the social worker said that Sam was traumatized in my home before he entered the school system. Again, it is the Mom's fault. I was stupidly honest about a few things in my life with emphasis that my life has been on the right track for 8 years which is when the restraints and seclusions started.
Sitting in that meeting I completely understood how Sam felt. I got up, grabbed my stuff and said as quickly as possible before I fell into a lump of volcanic tears, "We are tabling this meeting, I am calling my lawyer and I will get my team together.
It was one of the worst days of my life. I sat there alone with nobody to guide me or assist me. It will be different at the next meeting. I am a fighter and I am getting my ducks in a row. This is not my fault. Sam is diagnosed with Autism and he has been traumatized. End of story.
If someone was to ask me to write a quick synopsis of this mornings meeting, the above is what I would have to say. The meeting didn't go well, not even a little bit.
When Sam was little, he and I were bullied by a group of Moms at our low income place that resembled my perception of hell. They used to dump dirty diapers under my window and call management. They also would teach their young kids to beat on Sam. I made a meeting to try to have the establishment help me and they organized their attack ahead of time planning on how they would band together to make me the villain. This is the flashback I was having while I was staring at a piece of paper that the school got together in advance to plan what they would say so Sam and myself had no voice.
Concerns of 12:1:1 team
1. Student safety and safety of others.
2. Disruptive and dangerous behaviors which include; yelling, screaming, crying, ...... I don't need to continue on this one.
3. Aggression toward peers and staff
4. Self-injurious behaviors
5. Bolting
6. Blocking entrances/exits
7. Unpredictable behavior triggered by apparent mood swings
8. Intensity and duration of outbursts
9. Sleeping
10. Student complaint of tremendous sadness
11. Inability to take any adult direction
12. Inability to complete any kind of academic work.
Student Needs
1. Full time mental health
2. 1:1 paraprofessional assistance
3. Autism hours
4. Time out/calm room
5. Asssistive Technology
The rest of the paper said what they tried and it listed around 30 items. There was no possible way they could have tried all of these things in such a short amount of time.
This is the paper I was holding while my body was starting to go into fight or flight.
How does someone respond to this? He needs the Time Out Room AKA Seclusion Room? They forgot to list he needs to be restrained because Sam would never just walk calmly to a time out room when he feels he is backed into a corner.
This is what Sam tells me about restraints and the use of seclusion rooms. "Mom, I am bad because they tell me I am bad." What they say is, I am supposing, "Sam if you made better choices these bad things would not happen." My son has Autism and his brain is wired differently. My son is also 95% successful in the community. Anybody that follows us knows that Sam is not a violent person nor is anyone afraid of him. He doesn't swear and he doesn't break anything in the home. The last thing he added about his new school is that he confided in me that the social worker would scream at him saying, "HOW DO YOU LIKE IT WHEN SOMEONE IS SCREAMING AT YOU!"
The reality is this. There is no place for Sam.
So I sat in the meeting and they made their attack. I attacked back saying that it is the educational system that has abused Sam to the point where school is a trigger and he continually went into fight or flight. I tried to make my argument that they had an outdated Fuctional Behavioral Analysis and all the Behavioral Intervention Plan says is to give him three warnings and if he doesn't comply he is restrained and put into time out.
We had three formal allegations of abuse last year against a school where multiple people have contacted me telling me about their child's bruises. It is sickening.
The ending point of the meeting is when the social worker said that Sam was traumatized in my home before he entered the school system. Again, it is the Mom's fault. I was stupidly honest about a few things in my life with emphasis that my life has been on the right track for 8 years which is when the restraints and seclusions started.
Sitting in that meeting I completely understood how Sam felt. I got up, grabbed my stuff and said as quickly as possible before I fell into a lump of volcanic tears, "We are tabling this meeting, I am calling my lawyer and I will get my team together.
It was one of the worst days of my life. I sat there alone with nobody to guide me or assist me. It will be different at the next meeting. I am a fighter and I am getting my ducks in a row. This is not my fault. Sam is diagnosed with Autism and he has been traumatized. End of story.
Monday, May 6, 2013
My letter to the CSE Chair
From Lives in the Balance
Now, this comic really isn't funny at all. Kids with behavioral challenges are often on the receiving end of physical, chemical, and mechanical restraints and locked-door seclusion. And, regrettably, there are still people who think these procedures are "therapeutic" (even though several children and adolescents die each year as a result of such procedures). In fact, such procedures are usually just acts of desperation that are employed because a child's lagging skills and unsolved problems haven't yet been identified, adults are still viewing the child's challenges through obsolete lenses, and intervention is still primarily emergent (rather than proactive) and punitive (rather than collaborative).
For me and Sam, an environment where Restraints and the use of Seclusion Rooms is not the answer. It is now my job to find
the support I need for Sam to get the proper evaluations to find the lagging
skills and unsolved problems.
To be totally honest, I feel that you twist my
words to use them against us. Sam is 95% successful in the community and 99%
successful in the home. It is not his mental health that is failing him it is
the educational system.
The Social Worker from the new school called me and he said that the Behavioral Intervention Plan was not of any use to them.
In his words, he said, "We need to know what drives Sam's bus." He said that
the only thing written in the BIP was to restrain Sam and put him in Time Out
(Seclusion Room). He also said that the only alternative was to escort Sam and
his exact words were, "I am sorry but an escort is dragging the kid, kicking and
screaming to Time Out (Seclusion Room).
Sam's trauma stems from 6 years of
abuse. We had three formal investigations from Sam reporting to me the abuse
that he endured by those "Security People" at his old school. I am not putting Sam
in a Day Treatment which is the Most Restrictive Environment just because our school district won't help us evaluate Sam to get to what drives "his bus." I also need to add
that the Functional Behavioral Assessment was outdated.
I am building my team and I will hand in the
pediatrician's letter stating that Sam is "medically unable to attend school."
The pediatrician will help us until the evaluations are completed so we know
what drives Sam.
Sam is a creative kid who finds safety in his
creativity. The tutor called me and asked me what "supplies" he had. I told
her that if she came with a notebook and worksheets she would not have success. She came with a notebook and around 50 worksheets. She may say that she was
successful but I was there. Sam was frustrated because again, nobody is
listening to Sam and what he communicates as to what his needs are. Sure enough, she is bringing colored pencils. Sam
needs hands on with a manipulative driven curriculum that addresses his need to
be creative. Scribbling on a piece of paper doesn't cut it.
Please let me know when the CSE is and Sam will not
be joining us. The first order of business is to change his classification to
Autism. I have documentation from our Autism Clinic that says that this is what they
recommend his classification to be. I will bring this documentation to the
meeting.
I will hand in the letter asking for (per my
advocate) any evaluations, including educational evaluations, that have been
completed on Sam. I am also asking for all notes, from the past two years, of
the CSE meetings. I have been told that the comments from the IEP are not the
notes from the CSE. I will tell the school to put in writing all the things that
are not available to us and I will show the advocate and she will help me get
what she needs to help us.
One last thing, I know you have one of the hardest
jobs in the world and I couldn't do what you do for a living. I also have one
of the hardest jobs in the world that I can't walk away from. I have the
deepest respect for you and your reputation stands on its own. You work for our district and our district and its educational system is who I am angry at. Not you. I
will fight until he is 21. My son deserves an education that addresses his
needs as an individual.
Sam is not a child to lump into one category under
Mental Health. Our kids with Autism, yes that is his primary diagnosis, have a
very high co morbidity rate. The reason why I will fight to change the classification is because 1. Autism is his primary diagnosis and 2. I never
want to hear that he has "Autism like" tendencies again. He doesn't have
"Autism like" tendencies. Sam is diagnosed with Autism and he deserves the
services that are included under that classification.
I have attached the picture of Sam in my arms because this photo was taken one week before the Mental Hygiene Arrest. This is a picture of Sam despondent because he didn't want to go to school where they hurt him. It is this picture that motivates me to find a better solution, which includes data from evaluations and best practices, for Sam.
I have attached the picture of Sam in my arms because this photo was taken one week before the Mental Hygiene Arrest. This is a picture of Sam despondent because he didn't want to go to school where they hurt him. It is this picture that motivates me to find a better solution, which includes data from evaluations and best practices, for Sam.
Debra
Definition of Mental
1. a: of, relating to, or being intellectual as contrasted with overt physical activity.
2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.
b: mentally disordered, mad, crazy.
I choose being an intellectual as my definition of being mental.
*The photo that I use for my background was taken by Sam.
Definition of Mental
1. a: of, relating to, or being intellectual as contrasted with overt physical activity.
2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.
b: mentally disordered, mad, crazy.
I choose being an intellectual as my definition of being mental.
*The photo that I use for my background was taken by Sam.
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