It is so confusing to say, "Please look at my child's strengths." when I am looking for evaluations to find his deficits. There is a quote by Laura Tisoncik "The difference between high-functioning and low-functioning is that high-functioning means your deficits are ignored, and low-functioning means your assets are ignored." I personally don't believe in the distinction between high-functioning vs low-functioning on the Autism Spectrum because I find it insulting to those who are nonverbal or have that awful R-Word diagnosis. I would find it appalling if someone said that my son was low-functioning. Oh wait a minute, Sam is thought of as low-functioning in the educational setting. It is the same educational setting where both his deficits and his assets are ignored.
What has got me so hyped up is that one of the members of Sam's team, that is supposed to be on our side, voiced their concern that I was causing Sam to dislike school. What they were saying was that when I talk in front of Sam about the restraints, taking away sensory items, ect., that I was causing more distress that Sam can't handle. Sam is aware that these are happening because it is happening to him. So this leaves me with the question of whether or not I should teach Sam how to advocate for what he needs to be successful. It also leaves me with the reality that those who have fought the system for their own children or are on the spectrum themselves make better advocates.
I don't hide my frustration with the school from my growing boy. I do my best to explain to him that I have to work within the system to make change. The actual words are, "Sam, I am making phone calls everyday and at meetings I am doing everything I can to help you get what you need." Sam usually climbs into my arms and cries. Crying is good, right?
Through all of my writings, advocacy and outreach I have found amazing people on the spectrum with amazing strengths. I found a wonderful young woman who sent me to the facebook page Stand Against Restraints, Seclusion, and Bullying by Teachers https://www.facebook.com/endabuseinschool?fref=ts. At that page I found another wonderful young woman who I talked with on the phone. I often message a fellow blogger at http://www.tinygracenotes.com. These people are self advocating for themselves and advocating for others through written work, attending rallies and being successful at reaching out to us who need help. These self advocating individuals are gifts given to me by my son's diagnosis of Autism. I want to extend that gift to my son.
I know I am going to make mistakes and I hope I cause more good than harm. I love my child like nobody else can. I am going to be there for whatever Sam needs at any given time and Sam knows I am working hard for him. Sam will be thirteen in May. Isn't thirteen a time in life where one should start to stand up for oneself? Or should I ask if age 15 would be the year that he should stand up for himself because they say he is developmentally two years behind? I recently found the Autistic Self Advocacy Network's mantra "Nothing about us without us" with the quote by Tony Coelho, "Self advocacy begins with the understanding that rights are never granted from above. They are grasped from below by those with courage and determination to seize that to which they are entitled." I wonder how these folks got to the point of advocating for themselves. The only thing I know is that I see a boy who is growing up and needs to know that his voice is an important voice that should be listened to.
I know Sam's team member didn't mean to cause me distress as I sat there taking deep breaths to keep the tears from falling. Maybe I am being unfair by saying that they lost a seat at Sam's educational table. Life isn't fair. The words hurt.
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.
*Find more of Sam's photos at https://www.facebook.com/SnapshotsBySamMaloney & http://www.youtube.com/watch?v=TXhzf2Hxhqk
Saturday, November 3, 2012
Wednesday, October 31, 2012
One Day Away
When things get tough my mind travels to unpleasant thoughts and scary experiences. I am under the impression that Post Traumatic Stress Disorder works that way. This last round about with the school and trying to help my son has left me feeling scared and alone. I am one blessed person with all of the posts, emails and phone calls I have received from family, friends and colleagues to let me know that I have support. The actual experience and the knowledge that it is me only that has to work double time to get him into a better placement is what makes me feel alone.
Having this feeling of loneliness is when I start to blog. Words keep me company as I see the letters spewing onto the computer screen. I am starting to make associations of my present stress with a more negative experience from my past. The thoughts that are haunting me is when I was one day away from losing my daughter to foster care.
Long story short, at the age of forty I received a diagnosis of having a Bipolar Disorder. Up to that point my diagnosis was Clinical Depression and my life was a mess. Wanting to flee my life after college I landed in Seattle, WA. (I am from western NY) When I was pregnant with my daughter, I decided that I would go off my psychiatric meds (which were the wrong meds) to protect my unborn child. I starting slipping a few months after she was born and spiraled down to the point of being semi-catatonic. I was literally frozen in fear and was unable to care for my beautiful baby girl. The powers that be that led to foster care decided I was no longer a fit parent. When she was six months old I received a phone call that the next day they were picking her up to take her away. The words that haunt me are, "You can always get her back." The day of the phone call I called my Mom and she flew out to Seattle the next day. The Child Protective Agency never knocked on my door.
I need to fast forward six years. I sat in a court of law for six months fighting for custody of my son. My abusive partner decided that he was going to use the defense that I was mentally ill. I sat in disbelief that my mental health could be used against me. The unbelievable part to me was that at that time I was mentally healthy. I knew what I needed to do and say and he didn't win. That is another story for a different time.
I was thirty six when my son was born so the Bipolar diagnosis hadn't happened yet and my life was still a mess. I registered for classes at a local psychiatric rehabilitation center and I started to learn how to answer my nagging question, "Who am I?" It was there that I met so many Moms that lost custody of their children to abusive partners because of their own mental health diagnosis. I started researching for my book and one day I sat at my computer and read that seventy to eighty percent of parents with a psychiatric disability lose custody of their children. I sat there with the knowledge that if I had lost Mina that day I would have never gotten her back.
I could post countless photos of my daughter growing up to show what I would of missed but I won't. I also have my memories to hold on tight to my heart. I guess what I am trying to say is that once I gained the knowledge that I was so close to losing my baby girl, everyday that she was in my care was a gift. I cried at every single one of her concerts, plays, sports and all the other activities that she enjoyed. I am not sure if I cried for myself or for all of those that didn't get to experience the joy of raising a child because of an unfair system.
My Mina is now in college and she is having a great time. She is an artist and already some of her sketches are in the college archives. She texts or calls me almost everyday, not because she misses me, but because she wants to talk with me. We share a special bond and for that I am thankful. She has been with me through my mental health challenges, Domestic Violence, Breast Cancer, Autism and finally my acceptance of who I am. I have been single for the past five years and I hope I have taught her that she doesn't need to be in a relationship to be happy. I believe that I have finally taught her that a person needs to be happy with oneself before a healthy relationship can begin.
My friends refer to Mina as an old soul. She is wise beyond her years. I asked her once if she could wave a magic wand and be an only child would she change her life. Her response was, "No Mom, I would not know what I know." My Mina is a great example of what our siblings with Autism can become.
My Mina is a shining star.
This is a photo that Sam took of the two of us.
I need to share one more. :)
I love you honey. Momma Bear is proud of you.
Having this feeling of loneliness is when I start to blog. Words keep me company as I see the letters spewing onto the computer screen. I am starting to make associations of my present stress with a more negative experience from my past. The thoughts that are haunting me is when I was one day away from losing my daughter to foster care.
Long story short, at the age of forty I received a diagnosis of having a Bipolar Disorder. Up to that point my diagnosis was Clinical Depression and my life was a mess. Wanting to flee my life after college I landed in Seattle, WA. (I am from western NY) When I was pregnant with my daughter, I decided that I would go off my psychiatric meds (which were the wrong meds) to protect my unborn child. I starting slipping a few months after she was born and spiraled down to the point of being semi-catatonic. I was literally frozen in fear and was unable to care for my beautiful baby girl. The powers that be that led to foster care decided I was no longer a fit parent. When she was six months old I received a phone call that the next day they were picking her up to take her away. The words that haunt me are, "You can always get her back." The day of the phone call I called my Mom and she flew out to Seattle the next day. The Child Protective Agency never knocked on my door.
I need to fast forward six years. I sat in a court of law for six months fighting for custody of my son. My abusive partner decided that he was going to use the defense that I was mentally ill. I sat in disbelief that my mental health could be used against me. The unbelievable part to me was that at that time I was mentally healthy. I knew what I needed to do and say and he didn't win. That is another story for a different time.
I was thirty six when my son was born so the Bipolar diagnosis hadn't happened yet and my life was still a mess. I registered for classes at a local psychiatric rehabilitation center and I started to learn how to answer my nagging question, "Who am I?" It was there that I met so many Moms that lost custody of their children to abusive partners because of their own mental health diagnosis. I started researching for my book and one day I sat at my computer and read that seventy to eighty percent of parents with a psychiatric disability lose custody of their children. I sat there with the knowledge that if I had lost Mina that day I would have never gotten her back.
I could post countless photos of my daughter growing up to show what I would of missed but I won't. I also have my memories to hold on tight to my heart. I guess what I am trying to say is that once I gained the knowledge that I was so close to losing my baby girl, everyday that she was in my care was a gift. I cried at every single one of her concerts, plays, sports and all the other activities that she enjoyed. I am not sure if I cried for myself or for all of those that didn't get to experience the joy of raising a child because of an unfair system.
My Mina is now in college and she is having a great time. She is an artist and already some of her sketches are in the college archives. She texts or calls me almost everyday, not because she misses me, but because she wants to talk with me. We share a special bond and for that I am thankful. She has been with me through my mental health challenges, Domestic Violence, Breast Cancer, Autism and finally my acceptance of who I am. I have been single for the past five years and I hope I have taught her that she doesn't need to be in a relationship to be happy. I believe that I have finally taught her that a person needs to be happy with oneself before a healthy relationship can begin.
My friends refer to Mina as an old soul. She is wise beyond her years. I asked her once if she could wave a magic wand and be an only child would she change her life. Her response was, "No Mom, I would not know what I know." My Mina is a great example of what our siblings with Autism can become.
My Mina is a shining star.
This is a photo that Sam took of the two of us.
I need to share one more. :)
I love you honey. Momma Bear is proud of you.
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.
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, September 1, 2012
Darn It All To Heck Anyway
You would think that I would know how to back out of a driveway but no, I only look behind me on the right and I clean of my passenger side mirror with a tree. I got out of the car and cried. My thoughts quickly went to the fact that again, I have to call my parents asking for help because I don't have a dime to my name.
It isn't the car that upset me. Things happen and I pull up all the sayings like, "This too shall pass." or "Nobody was hurt." and my favorite, "I am not dying from cancer." I will take a crushed mirror over whatever ever worse thing that could of happened.
So let me back up a week. OK, I need to back up two weeks. I have mentioned this before that Sam's school is all in upheaval about who will be on his team. I am thinking the worst and trying to get all the paperwork into the lawyer just in case the worst is Sam's reality. In addition to that, I made a bad business decision and I walked away $300 in the hole. Anyway, I am trying to get over myself and it isn't working.
After all of this transpired I was looking forward to talking to a future care planning agency about setting up a Special Needs Trust for Sam so I can finally set up his page to sell prints and have fundraisers for Sam's SLR Camera. I walked away from the meeting realizing that I would have no control over monies that I put into the trust. I sit here feeling guilty for wanting to eat well and look nice while networking for Sam. If something wonderful happened and Sam became wildly successful I would love to set up foundations to help families get what they need for their child for their special need. It is complicated because I am on SSI and Sam is on SSD. Sam and I are completely in the hands of the government.
So for today, I am sitting here trying to figure out if I should be as honest as I am about my life and my hurts. I got this message from my friend Stephanie, " when I see you post things I'm reminded that I'm never alone and yeah, well. thanks so much for everything you do. We appreciate you too :)" I can"t express in words how much this means to me.
I had the priviledge to listen to an interview with Michael Ricucci from Terra Rising Records. Michael and his business partner Michelle Akaras are currently in production of a film Music Rising about the power of Music Therapy. They also do fundraising to help with funding for music in education. These are two selfless people that I love to follow.
I would like to share what I wrote to Michael.
Michael, I think my favorite part of the interview is the interviewer's question, "What advice do you have to the brand new artist that is hoping to connect."
I listened to what you were saying and I asked myself if I know who I am, what I am saying, and what is my mission with Sam.
In a nutshell this is what I come up with every time I ask myself these questions. I am a single Mom living in poverty. I am on SSI and Sam is on SSD. I want to connect with others as they see me climb out of poverty knowing that they can bring their dreams to reality. I want people to learn what Sam's Autism really is and that is just isn't me taking Sam out to take wonderful photos and all this magic happens. In addition to that I want people to get an idea of what living with a Bipolar diagnosis is and how it is manageable. I want Sam to have a life where he isn't living off of $721 a month on SSD or SSI. Temple Grandin says, "Living on Social Security if not a job choice." I also have my dream of being a writer/speaker about our travels and experiences.
I am hopeful that others will be inspired by my story.
My biggest dream is that if my daughter needs help financially because she has mountains of bills from college that I can help her. As it stands now, I have a lot of work to do.
To all of my readers, I so appreciate all of you. To all of my photographer friends, thank you for inspiring me.
Sincerely,
Debra Pierce Bellare
I had the priviledge to listen to an interview with Michael Ricucci from Terra Rising Records. Michael and his business partner Michelle Akaras are currently in production of a film Music Rising about the power of Music Therapy. They also do fundraising to help with funding for music in education. These are two selfless people that I love to follow.
I would like to share what I wrote to Michael.
Michael, I think my favorite part of the interview is the interviewer's question, "What advice do you have to the brand new artist that is hoping to connect."
I listened to what you were saying and I asked myself if I know who I am, what I am saying, and what is my mission with Sam.
In a nutshell this is what I come up with every time I ask myself these questions. I am a single Mom living in poverty. I am on SSI and Sam is on SSD. I want to connect with others as they see me climb out of poverty knowing that they can bring their dreams to reality. I want people to learn what Sam's Autism really is and that is just isn't me taking Sam out to take wonderful photos and all this magic happens. In addition to that I want people to get an idea of what living with a Bipolar diagnosis is and how it is manageable. I want Sam to have a life where he isn't living off of $721 a month on SSD or SSI. Temple Grandin says, "Living on Social Security if not a job choice." I also have my dream of being a writer/speaker about our travels and experiences.
I am hopeful that others will be inspired by my story.
My biggest dream is that if my daughter needs help financially because she has mountains of bills from college that I can help her. As it stands now, I have a lot of work to do.
To all of my readers, I so appreciate all of you. To all of my photographer friends, thank you for inspiring me.
Sincerely,
Debra Pierce Bellare
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.
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, August 27, 2012
Does Worrying Help?
I can have countless conversations, while asking for advice, that go something like this, "Just change his IEP" or "Put that in writing" and my favorite, "Make sure you are nice about it." My biggest question that I ask myself is, "What can I do to get through my worry?"
I am going to worry. I know that living this life with Sam, the worry will never go away. I personally feel that this concept called worry is what keeps me on my toes. To all of those that think that worry has no use I have to politely disagree because it works for me.
While on vacation in Maine I stumbled upon a post about how Sam's school has changed things around and I don't know who will be the Autism Specialist and who will be Sam's new Vice-Princiapal. What the heck can I do about any of this and what is worrying going to do while I am hundreds of miles away from home? Worry gets my wheels churning and the seeds of "what's next" are planted. Raising my daughter was so different because she didn't face the challenges of Autism and I felt little need to be involved in her schooling. She was in good hands. I cannot have that blase attitude with Sam because if I am not in the ring of education nothing will get done. I have no faith in the school system that is supposed to take care of Sam and to get him as far as his capabilities will take him.
The biggest challenge for me is when the worry changes to anger. Anger can also fuel me forward but when it grows, sometimes exponentially, the wall between those that I am communicating with are sealed with air tight cement blocks that is my stubbornness to stop listening. I have little use for anger so I continue on my path filled with worry stones that remind me that I have to continue with the fight.
I have to then ask myself, "Who am I fighting with?" Is it myself or is it with others that I feel should be doing a better job with Sam. Recent memories haunt me of sitting with the school psychiatrist as she tells me about Sam's snip-its of intelligence making me feel like she is saying that we just can't expect too much of him. Worry sits on my shoulder as the powers at be tell me that they would prefer a non-trained professional to help Sam with the Assisted Technology. I just do my best to sit back and politely tell them that it just isn't good enough. And there are those that think that I should just get used to the idea that Sam will not go far in life because of his disability. My job will never be done and I will lay off the school professionals when he is twenty one.
So for now I have to figure out what I will do with my worry until school starts. I will write my emails and make phone calls and write letters to make sure that meetings will take place at the start of the school year. I am going to do a better job with taking notes. I will put everything in the IEP such as my need for documentation for the Assisted Technology. I will do my best to be nice. I am Sam's Mom and this is my job and I am going to do it well.
There is one thing that is on the top of my list to stop worrying about. I will worry less about what other people think of me and how I raise my son. I have many wonderful people that "get it" in my life. This will be enough for me. Thank you everybody.
Sincerely,
Debra Pierce Bellare.
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 27, 2012
Scrutiny in Autism
I saw a post on facebook and it said, "You may be an Autism parent if...you have more people that understand you in other states and countries than in your own neighborhood." I bypassed this post because I thought, "No, that doesn't fit me." I am finding out more and more that maybe it does relate to my life and living with Autism.
The people that are closest to me have said that they think I force Sam to take photos, that I am taking the photos for him and that I am addicted to facebook. I can handle these comments because you can't pick your family. I can pick my friends and when comments are made by them it breaks my heart.
I started a facebook blogging group a while back (Blogging Together for Autism) and I am so happy because we now have 42 members and there are people that blog besides me. I thank all my fellow Autism bloggers that are educating people how we feel living with Autism. We walk along the path of Autism with comments thrown at us every which way. We live and deal with these hurts through our writing. I also have to thank the people that read our blogs because having an audience is part of the fun.
I would like to talk first about this post about support from other states and countries. I have a high school friend that asked me to contact her daughter in Ohio who's son had a recent diagnosis of Autism. She is now my Sister in Autism. We had the opportunity to meet the other week and we talked like we have known each other for years. She gets it and in turn she gets me. She supports Sam and the entire family was happy to meet him. I really can't ask for anything more. I also have multiple people message me to ask me how I have helped Sam. I am fulfilling my dream to be an educator. The biggest compliment that I have ever received was from a Mom that placed a camera in her child's hands and thanked me because she would have never thought of it by herself.
So am I forcing Sam to take photos? No, I don't think so. If I become frustrated and ask Sam if he wants to quit he is quick to cry saying, "Mom, please don't take photography away from me." He knows he gets frustrated and sometimes he will only take a few photos and then call it quits. That is OK with me. We can take photos anytime at any place. Transitioning is so difficult for Sam and sometimes he takes multiple breaks with skipping stones in streams and dream about the next time he can go fishing.
Do I take the photos for him? No, I don't think so. How many people have been in a photography class learning about that great photo. Sam has a lot of natural talent and there are often times I have a suggestion about a particular place and his photo is always better. Sam doesn't like to take photos where there are lots of people and these situations are often too stressful for him. It is getting easier for Sam to take chances in his photography and it will get easier as he matures and is better able to handle the stress.
Am I addicted to facebook? I love this question. I probably am and I don't care. I don't have a lot of friends in my city and I am choosing the ones that I want to know and they live in other states and in other countries. I will never forget the time that my friend from Dublin, Ireland made a video for Sam. It was that video that was shown at the Autism Speaks Kickoff Dinner for their walkathon. I am looking forward to meeting her in her garden that she is building in her studio. I have so many people to list that are important to me and this includes my friend in Toronto who Sam and I are meeting this weekend. Her nature photography is amazing and she has an interest in birds just like Sam.
Do I have friends in my backyard? Yes, absolutely I have friends that I cherish. I am quick to think of the Mom that I email almost daily with our concerns for our sons. I often tell her how afraid I am that as Sam's popularity grows more and more people will be critical of me and how I live my life. I often ask her to please stay with me because I fear the lonliness that might come because people may be quick to judge me and the way I am raising Sam.
I would like to end this rant of mine with one request. Please respect the way I parent my child. I love the post from Single Mothers who have children with Autism that says, "Motherhood is not a battle against other mothers. Motherhood is YOUR journey with YOUR children. These are now my words that I will live by.
At the end of the post "You may be an Autism parent if...." it says, "How would you finish this sentence." I would have to say, "You may be an Autism parent if you have to ask your friends to please respect how you raise your child."
Sincerely,
Debra Pierce Bellare (Sam's Mother)
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.
Wednesday, July 25, 2012
Autism Does Not Sit On An Island
Last Monday, July 23, 2012, Joe Scarborough from MSNBC made the comment about how he believes that people on the Autism Spectrum are capable of murder. In addition, Mr. Scarborough is quoted as saying, "most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale" which leaves us all thinking that he is linking Autism with having a mental health challenge. Although it saddens me on the stupidity of his statements, I am left in disbelief on how my Autism Community has responded.
Just like Autism, the vast majority of individuals with a mental health challenge are not criminals and are never violent. Whenever a horrific serial killing event happens it is linked with a person having a Mental Illness. It is these events that solidify people's opinion that those of us with a mental health diagnosis are capable of going on a mass shooting spree killing innocent people. All of us in the Mental Health Community suffer from these unfair assumptions. Seventy to eighty percent of individuals who are diagnosed with a mental health challenge lose custody of their children. I could have been one of them because I sat in a court of law dazed and confused why my mental health was being used against me. I was traumatized as the lawyer stood up and said that my mental health diagnosis was grounds for immediate loss of custodial rights because I could hurt or even kill my child.
The question will always be, "Why do people kill?" What Mr. Scarborough was saying is that there is under funding for both individuals diagnosed with Autism and Mental Illness. This is a true statement. How many of us are fighting for services for our children? How many of us can not tap into the mental health system because our children are part of the developmental disability system and nobody link the two together?
There are too many examples on how a tragedy happened because the individual didn't find help in time. Years ago there was a man that pushed a woman into the subway tracks inNew York City
I think about Sam and his issues with theGreece School District
Today I am left thinking about all the comments left from my fellow advocates with tears streaming down my face feeling traumatized by my own Autism Community.
Maybe this conversation boils down to other people's experiences and points of view. I personally think of the people that I hold in the highest regard who have let me down with their comments and helping to perpetuate the stigma that we live with on a daily basis. It is my opinion that these people are no better than Joe Scarborough.
I am, first and foremost, an advocate and the protector of my son. I will stay in the Autism Community and fight my hardest to teach people who Sam is and the wonderful things he is capable of doing. It is my job as his Mother. I am hopeful that people will be more supportive of all of us who are diagnosed with a mental health challenge.
I would like to end by saying Thank You to all of my friends in the Autism Community who support me and my son. It is your support that gives me the strength to advocate for 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.
Just like Autism, the vast majority of individuals with a mental health challenge are not criminals and are never violent. Whenever a horrific serial killing event happens it is linked with a person having a Mental Illness. It is these events that solidify people's opinion that those of us with a mental health diagnosis are capable of going on a mass shooting spree killing innocent people. All of us in the Mental Health Community suffer from these unfair assumptions. Seventy to eighty percent of individuals who are diagnosed with a mental health challenge lose custody of their children. I could have been one of them because I sat in a court of law dazed and confused why my mental health was being used against me. I was traumatized as the lawyer stood up and said that my mental health diagnosis was grounds for immediate loss of custodial rights because I could hurt or even kill my child.
The question will always be, "Why do people kill?" What Mr. Scarborough was saying is that there is under funding for both individuals diagnosed with Autism and Mental Illness. This is a true statement. How many of us are fighting for services for our children? How many of us can not tap into the mental health system because our children are part of the developmental disability system and nobody link the two together?
There are too many examples on how a tragedy happened because the individual didn't find help in time. Years ago there was a man that pushed a woman into the subway tracks in
I think about Sam and his issues with the
Today I am left thinking about all the comments left from my fellow advocates with tears streaming down my face feeling traumatized by my own Autism Community.
Maybe this conversation boils down to other people's experiences and points of view. I personally think of the people that I hold in the highest regard who have let me down with their comments and helping to perpetuate the stigma that we live with on a daily basis. It is my opinion that these people are no better than Joe Scarborough.
I am, first and foremost, an advocate and the protector of my son. I will stay in the Autism Community and fight my hardest to teach people who Sam is and the wonderful things he is capable of doing. It is my job as his Mother. I am hopeful that people will be more supportive of all of us who are diagnosed with a mental health challenge.
I would like to end by saying Thank You to all of my friends in the Autism Community who support me and my son. It is your support that gives me the strength to advocate for 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.
Thursday, June 7, 2012
The Short Bus
Traveling down the road I hear from the radio, "I used to ride the short bus and now I tell people what to do." The message came from a radio show "Rover's Morning Glory" and with a "GRRR" coming from me I changed the station. I ingest these types of comments and they sit at the bottom of my gut and mull around. I hate words that bring images of my struggles with raising a child with Autism.
I ask Mina, "Hey, do your friends make fun of people who ride the short bus?" She doesn't have much to say. I am sure she feels bad that her brother has to ride the little orange mobile.
I have been to countless conferences and gatherings where the keynote speaker gives their presentation and the underlying message whispers to me, "Your kid is disabled, we all know that he is disabled and life is not fair." I often walk away not wanting Sam to be that adult that says, "If only they had listened." Sam and my situation often breaks my heart.
This blog is my special place where I can say what I feel and right now my internal thoughts are, "This stinks." I have to pull every thing apart and concentrate on what is good. Right now the bus situation is not even a little bit good.
I think of the bus as that orange looking bug with the yellow flashing lights that turn to red that seem to make fun of me shouting, "Once these doors are shut your kid is mine and I am going to eat him and spit him out!" I will never really know what happens in that all consuming monster.
OK, I am not being fair. The drivers and monitor are not paid much and they are trying to get through their day. Also, a lot of these folks grew up in a time where Autism wasn't really known and kids were taught to obey their elders. In today's world there is a shift in thinking that people need to conform to the needs of Autism and there doesn't seem to be any middle ground of understanding. I live with their message of "Your kid is a bad kid." The bus reports cut through me as I fear what life will be like when Sam is bigger and stronger. Sam needs to learn how to regulate his emotions and I am hopeful that we will find the people to teach him the tools so he can survive in society.
I am often met with remarks from others when it comes to Sam and his outbursts, "That is not the Sam that we know." I often nod in agreement as I try to imagine the sensory overload that puts Sam in a flight or fight mode as the kid whispers to him on the bus, "Shut the #@&* up." Sam tries to speak up about his perceptions of unfairness to the adult only to be met with, "That's not true." Sam turns to the adult that is supposed to protect him and screams, "Shut the #@&* up!" This makes sense to me because the adult doesn't want to be bothered with, in their words, (yes, I heard it myself) "Those kids with problems" and Sam throws caution to the wind.
I have to chuckle as the bus monitor calls me at her breaking point not knowing what to do. I hear Sam screaming with language that is not welcoming with the monitor yelling trying to gain control. It really is not funny and it is clearly a situation where nobody has control.
As I reread my words I wonder if I feel better getting my thoughts out there to whomever wants to read them. The fact is that I am traumatized along side of Sam as I try to navigate the system. The Educational Advocate sits with me in bus meetings telepathically sending messages with our nonverbal communication, "Well, that meeting was fruitless." For now, I am picking up Sam from school until we figure things out.
I know in my heart that Sam will learn the tools that he needs to gain control of himself. I think of where we started and he has made great strides. Success is, after all, a journey and not a destination. Without the difficult times I would not truly feel the joy when life is good.
Now that I have had time to process the comments from Rover, I now say, "Good for him. He overcame all that comes along with riding the short bus. I just hope he is polite when he tells people what to do."
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.
I ask Mina, "Hey, do your friends make fun of people who ride the short bus?" She doesn't have much to say. I am sure she feels bad that her brother has to ride the little orange mobile.
I have been to countless conferences and gatherings where the keynote speaker gives their presentation and the underlying message whispers to me, "Your kid is disabled, we all know that he is disabled and life is not fair." I often walk away not wanting Sam to be that adult that says, "If only they had listened." Sam and my situation often breaks my heart.
This blog is my special place where I can say what I feel and right now my internal thoughts are, "This stinks." I have to pull every thing apart and concentrate on what is good. Right now the bus situation is not even a little bit good.
I think of the bus as that orange looking bug with the yellow flashing lights that turn to red that seem to make fun of me shouting, "Once these doors are shut your kid is mine and I am going to eat him and spit him out!" I will never really know what happens in that all consuming monster.
OK, I am not being fair. The drivers and monitor are not paid much and they are trying to get through their day. Also, a lot of these folks grew up in a time where Autism wasn't really known and kids were taught to obey their elders. In today's world there is a shift in thinking that people need to conform to the needs of Autism and there doesn't seem to be any middle ground of understanding. I live with their message of "Your kid is a bad kid." The bus reports cut through me as I fear what life will be like when Sam is bigger and stronger. Sam needs to learn how to regulate his emotions and I am hopeful that we will find the people to teach him the tools so he can survive in society.
I am often met with remarks from others when it comes to Sam and his outbursts, "That is not the Sam that we know." I often nod in agreement as I try to imagine the sensory overload that puts Sam in a flight or fight mode as the kid whispers to him on the bus, "Shut the #@&* up." Sam tries to speak up about his perceptions of unfairness to the adult only to be met with, "That's not true." Sam turns to the adult that is supposed to protect him and screams, "Shut the #@&* up!" This makes sense to me because the adult doesn't want to be bothered with, in their words, (yes, I heard it myself) "Those kids with problems" and Sam throws caution to the wind.
I have to chuckle as the bus monitor calls me at her breaking point not knowing what to do. I hear Sam screaming with language that is not welcoming with the monitor yelling trying to gain control. It really is not funny and it is clearly a situation where nobody has control.
As I reread my words I wonder if I feel better getting my thoughts out there to whomever wants to read them. The fact is that I am traumatized along side of Sam as I try to navigate the system. The Educational Advocate sits with me in bus meetings telepathically sending messages with our nonverbal communication, "Well, that meeting was fruitless." For now, I am picking up Sam from school until we figure things out.
I know in my heart that Sam will learn the tools that he needs to gain control of himself. I think of where we started and he has made great strides. Success is, after all, a journey and not a destination. Without the difficult times I would not truly feel the joy when life is good.
Now that I have had time to process the comments from Rover, I now say, "Good for him. He overcame all that comes along with riding the short bus. I just hope he is polite when he tells people what to do."
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, May 15, 2012
#1 Rule: Keep Your Appointmets
When things get tough, well meaning people say, "Don't worry Deb. It is just a bump in the road." I appreciate these comments and I am thankful that people care enough about me to lift me up and push me forward. Lately these bumps feel more like mountains and all I want is for them to go away.
I write about having a Mental Illness for one reason. OK, I have two reasons. The first is that I have hopes that maybe my blog will find someone that is struggling to survive and I can be of some help. For the first time in my life I feel emotionally stable. Yes, I have the dips that maybe dip a little more than the normal person. The dips are manageable and aren't too deep where I can't find my way out.
I would have to say that my second reason is these two basic questions that I ask myself, “How can I teach a person what it is like to have a Mental Illness and how can I dispel the myths that hover over a person who has the Mental Illness if I don't talk about it?" For these two reasons, I write my story.
I write the term Mental Illness loosely. Actually, I hate the word Mental Illness. I would prefer to use the term Mental Health Challenge because I challenge my mental health to not defeat me. I am winning. I use the term Mental Illness because that is what people are used to hearing.
It is said that you can't go around, under or over a bump in the road that represents your current situation. I have learned that you have to go through it. I would rather go around it. I hate confrontation because it makes me symptomatic. My current situation is that I don't like my therapist. When I first came to the clinic she was assigned to me and I knew that it wasn't a good match. I wasn't happy and I asked for a new person to talk to about my hopes, fears and dreams. I was transferred to Jason and he was the best therapist I have ever had! He was there for me, he listened and he never judged. He moved out ofRochester
I told her that I wasn't happy and she said that we had to make it work. I don't show up for appointments. I either oversleep or I just happen to forget. Just like Sam, I am not compliant when I am not happy. I don't mean to forget or oversleep but somehow it always happens.
I say that the #1 rule for me is to keep my appointments. I have learned the hard way that if, for whatever reason, I end up in the Psych ED and they call my therapist, it would be in my best interest if they said that I was compliant. This is the definition of compliant: 1: ready or disposed to comply: submissive 2: conforming to requirements. To me this means that you don't have to like it but you have to do it.
Recently I was going over my calendar dates on my phone and I realized that I missed an appointment with my Psychiatrist. So much was happening with Sam that I forgot to check my phone. I panicked because he told me that I would not receive my meds if I forgot to show and discuss how I was dealing with all of my issues. I missed my slot of alloted time because I had decided to work and I chose money over my pills. I had to fight to get my meds and I promised that I would never decide to do something else besides checking in so my meds could be filled.
I was scared as I drove to the clinic. I was going to give it my best shot to get another appointment with the Psychiatrist. I figured that while I was there I would ask the clinic how I could change therapists. I walked up to the reception desk ready to make my speech. She looked it up and my time with the Psychiatrist wasn't until the 31st. I was elated that this was one more thing that I didn't have to deal with. I asked about changing therapists and they said that I had to talk with her directly. I feel disspointment because now I have to deal with the one thing I hate the most which is confrontation. I decided to make the appointment and be a big girl and hope that the therapist will let me be and make the change. I went home with two little white cards that proved that I wanted to be seen and that I wanted help.
These two little cards became a saving grace because that afternoon CPS came knocking on my door. Someone as an issue with me and has made false allegations for whatever reason. I knew that if the worker called the therapist, she would become aware that I was non compliant. When the CPS worker asked me about therapy I showed her the two cards with my alloted time. She now knows that I am compliant and that might be the one thing that saves my behind.
I have learned my lesson. KEEP MY APPOINTMENTS. End of discussion.
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.
I write about having a Mental Illness for one reason. OK, I have two reasons. The first is that I have hopes that maybe my blog will find someone that is struggling to survive and I can be of some help. For the first time in my life I feel emotionally stable. Yes, I have the dips that maybe dip a little more than the normal person. The dips are manageable and aren't too deep where I can't find my way out.
I would have to say that my second reason is these two basic questions that I ask myself, “How can I teach a person what it is like to have a Mental Illness and how can I dispel the myths that hover over a person who has the Mental Illness if I don't talk about it?" For these two reasons, I write my story.
I write the term Mental Illness loosely. Actually, I hate the word Mental Illness. I would prefer to use the term Mental Health Challenge because I challenge my mental health to not defeat me. I am winning. I use the term Mental Illness because that is what people are used to hearing.
It is said that you can't go around, under or over a bump in the road that represents your current situation. I have learned that you have to go through it. I would rather go around it. I hate confrontation because it makes me symptomatic. My current situation is that I don't like my therapist. When I first came to the clinic she was assigned to me and I knew that it wasn't a good match. I wasn't happy and I asked for a new person to talk to about my hopes, fears and dreams. I was transferred to Jason and he was the best therapist I have ever had! He was there for me, he listened and he never judged. He moved out of
I told her that I wasn't happy and she said that we had to make it work. I don't show up for appointments. I either oversleep or I just happen to forget. Just like Sam, I am not compliant when I am not happy. I don't mean to forget or oversleep but somehow it always happens.
I say that the #1 rule for me is to keep my appointments. I have learned the hard way that if, for whatever reason, I end up in the Psych ED and they call my therapist, it would be in my best interest if they said that I was compliant. This is the definition of compliant: 1: ready or disposed to comply: submissive 2: conforming to requirements. To me this means that you don't have to like it but you have to do it.
Recently I was going over my calendar dates on my phone and I realized that I missed an appointment with my Psychiatrist. So much was happening with Sam that I forgot to check my phone. I panicked because he told me that I would not receive my meds if I forgot to show and discuss how I was dealing with all of my issues. I missed my slot of alloted time because I had decided to work and I chose money over my pills. I had to fight to get my meds and I promised that I would never decide to do something else besides checking in so my meds could be filled.
I was scared as I drove to the clinic. I was going to give it my best shot to get another appointment with the Psychiatrist. I figured that while I was there I would ask the clinic how I could change therapists. I walked up to the reception desk ready to make my speech. She looked it up and my time with the Psychiatrist wasn't until the 31st. I was elated that this was one more thing that I didn't have to deal with. I asked about changing therapists and they said that I had to talk with her directly. I feel disspointment because now I have to deal with the one thing I hate the most which is confrontation. I decided to make the appointment and be a big girl and hope that the therapist will let me be and make the change. I went home with two little white cards that proved that I wanted to be seen and that I wanted help.
These two little cards became a saving grace because that afternoon CPS came knocking on my door. Someone as an issue with me and has made false allegations for whatever reason. I knew that if the worker called the therapist, she would become aware that I was non compliant. When the CPS worker asked me about therapy I showed her the two cards with my alloted time. She now knows that I am compliant and that might be the one thing that saves my behind.
I have learned my lesson. KEEP MY APPOINTMENTS. End of discussion.
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.
I Am Not Crazy
Cancer is a b*&@#. There is really no other way to put it. Not only do you have to suffer through treatments, you have to rise above the lasting results. Bad things will happen and people will say, "Well, at least you are cancer free." This is all good and I know that I should be thankful every single day that I am not dealing with chemo, radiation, psych appointments, therapy appointments and on and on. I just happened to have a problem with my feet and I could not rise above the anguish that the side effect of chemo had caused me.
There is a side effect of Chemo called Neuropathy. I have always had a pins and needle feeling in my feet. I never mentioned it to my Oncologist because it wasn't a quality of life issue. Once in a great while I would wake up in the middle of the night with this unbearable feeling in my feet. It is hard to describe the feeling that I get that wakes me up and makes me feel like I could go crazy if it continues. I think of fingernails scratching on a chalkboard. I would say that if my feet had a voice they would be screaming. My body scrunches up and I yell as I am pounding on my mattress wanting it to stop. I get out of bed and pound my feet on the floor.
That all changed this past week. For some reason my nerves in my feet decided that they would scream at me until I thought I would lose it. Every night Sam would wake up when he heard me yelp and he would rub my feet. Mina would hear me cry because her room is above mine. After seven days I decided that enough was enough and I went looking for help.
Because I am not financially sound I have to go to a clinic. They informed me that they could not see me until the following week. I told them that I could not wait. The world is filled with people who can't afford good quality care. I am just another one of those folks who are faceless and nameless. I finally landed in the ER.
I can just imagine what a mess I was with no shower. Perception is everything and I probably failed miserably on giving them the impression that I was a well put together individual. I told them my symptoms and they did this idiotic test by lightly brushing my feet asking me if I could feel it. I'm thinking, "Of course I can feel it. If I couldn't feel that I would be falling down you idiot." I told them that it was at night when I felt the nerve endings shooting up through my body. They told me they couldn't help me.
Being at the end of my rope I started crying. I was begging them to help me. Before I knew it they told me that I had to talk to a psychologist and they wheeled me around the corner. I'm thinking, "What the hell! It isn't my head! It is my feet!"
The psychologist sits down and in a very condescending manner asked me in a Mr. Rogers voice, "Do you know why you are here?" I'm looking at him probably with a stunned expression and I said, "I came to the ER because I am having problems with my feet." He went on and on saying that I wasn't giving the right impression. I tuned out after that and I told him I wanted to leave and go home. He told me that he had to make some phone calls. He walked away raising his hand as if to dismiss me and said to the four security guards that I was not free to go. I just sat there and said to the guards, "I only wanted help for my feet." I laugh now because I probably said I wanted help for my feet over 100 times.
He came back and told me that he found out that I had cancelled my therapy appointments and that made me noncompliant. I had to explain that my therapist was not a good match for me and I was frustrated because the clinic will not help me find a therapist that fits my needs. I wanted to smack the guy.
I feel like such an idiot because I guess the hospital put me under a Mental Hygiene Arrest. They never told me. They just wheeled me around a corner and told me I was not free to leave. Memories flood through me as I recall women who have told me that their husbands had admitted them to the psych ward and they didn't have a voice. I recall stories on how they had lost custody of their children because of the cruel treatment they had received. I was experiencing something out of my control and it made me feel sick. I just sat there realizing that I also had no voice.
I had given the psychologist Mina's phone number so that she could say that I wasn't a threat to myself or to others. He came back and said that he was waiting for her to call back. I frantically called my Mom with no luck. I called my good friend and he talked with her. She later told me that she just said that I was the most well put together individual in spite of the many things that I have to deal with on a day to day basis. Mina had finally called the guy and she informed him that she indeed had heard me crying because of my discomfort of my feet.
During this entire fiasco in the psych hall of the Emergency Department a guy walks by and asks if I am being helped. I said that I wasn't and I was having problems with my feet. I mean really, I wanted to scream. He did this test where he had something that looked like a letter opener and scraped my feet like he wanted to scrap off a layer of skin. That feeling of hard pressure on my feet felt like a comfort like no other. The only thing that makes the discomfort go away is pressure. He scraped my hands and I told him that it hurt. He said that I had Neuropathy and he prescribed Neurotin.
At this point I was free to go and the guards magically disappeared. That is when I realized that the guards were there for me.
Today I was ecstatic because I finally received help. After the first dose of Neurotin I had finally had a good night of blissful sleep. I was ready to continue on with my life. That is until three o’clock this afternoon when CPS came knocking on my door.
Definition of Mental
There is a side effect of Chemo called Neuropathy. I have always had a pins and needle feeling in my feet. I never mentioned it to my Oncologist because it wasn't a quality of life issue. Once in a great while I would wake up in the middle of the night with this unbearable feeling in my feet. It is hard to describe the feeling that I get that wakes me up and makes me feel like I could go crazy if it continues. I think of fingernails scratching on a chalkboard. I would say that if my feet had a voice they would be screaming. My body scrunches up and I yell as I am pounding on my mattress wanting it to stop. I get out of bed and pound my feet on the floor.
That all changed this past week. For some reason my nerves in my feet decided that they would scream at me until I thought I would lose it. Every night Sam would wake up when he heard me yelp and he would rub my feet. Mina would hear me cry because her room is above mine. After seven days I decided that enough was enough and I went looking for help.
Because I am not financially sound I have to go to a clinic. They informed me that they could not see me until the following week. I told them that I could not wait. The world is filled with people who can't afford good quality care. I am just another one of those folks who are faceless and nameless. I finally landed in the ER.
I can just imagine what a mess I was with no shower. Perception is everything and I probably failed miserably on giving them the impression that I was a well put together individual. I told them my symptoms and they did this idiotic test by lightly brushing my feet asking me if I could feel it. I'm thinking, "Of course I can feel it. If I couldn't feel that I would be falling down you idiot." I told them that it was at night when I felt the nerve endings shooting up through my body. They told me they couldn't help me.
Being at the end of my rope I started crying. I was begging them to help me. Before I knew it they told me that I had to talk to a psychologist and they wheeled me around the corner. I'm thinking, "What the hell! It isn't my head! It is my feet!"
The psychologist sits down and in a very condescending manner asked me in a Mr. Rogers voice, "Do you know why you are here?" I'm looking at him probably with a stunned expression and I said, "I came to the ER because I am having problems with my feet." He went on and on saying that I wasn't giving the right impression. I tuned out after that and I told him I wanted to leave and go home. He told me that he had to make some phone calls. He walked away raising his hand as if to dismiss me and said to the four security guards that I was not free to go. I just sat there and said to the guards, "I only wanted help for my feet." I laugh now because I probably said I wanted help for my feet over 100 times.
He came back and told me that he found out that I had cancelled my therapy appointments and that made me noncompliant. I had to explain that my therapist was not a good match for me and I was frustrated because the clinic will not help me find a therapist that fits my needs. I wanted to smack the guy.
I feel like such an idiot because I guess the hospital put me under a Mental Hygiene Arrest. They never told me. They just wheeled me around a corner and told me I was not free to leave. Memories flood through me as I recall women who have told me that their husbands had admitted them to the psych ward and they didn't have a voice. I recall stories on how they had lost custody of their children because of the cruel treatment they had received. I was experiencing something out of my control and it made me feel sick. I just sat there realizing that I also had no voice.
I had given the psychologist Mina's phone number so that she could say that I wasn't a threat to myself or to others. He came back and said that he was waiting for her to call back. I frantically called my Mom with no luck. I called my good friend and he talked with her. She later told me that she just said that I was the most well put together individual in spite of the many things that I have to deal with on a day to day basis. Mina had finally called the guy and she informed him that she indeed had heard me crying because of my discomfort of my feet.
During this entire fiasco in the psych hall of the Emergency Department a guy walks by and asks if I am being helped. I said that I wasn't and I was having problems with my feet. I mean really, I wanted to scream. He did this test where he had something that looked like a letter opener and scraped my feet like he wanted to scrap off a layer of skin. That feeling of hard pressure on my feet felt like a comfort like no other. The only thing that makes the discomfort go away is pressure. He scraped my hands and I told him that it hurt. He said that I had Neuropathy and he prescribed Neurotin.
At this point I was free to go and the guards magically disappeared. That is when I realized that the guards were there for me.
Today I was ecstatic because I finally received help. After the first dose of Neurotin I had finally had a good night of blissful sleep. I was ready to continue on with my life. That is until three o’clock this afternoon when CPS came knocking on my door.
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.
Sunday, May 13, 2012
When The Feeling Comes Around Again
Sam has been having a tough time at school and his frustration comes out in all sorts of ways. Sam and I were driving home from the Got Dreams Awards the other night and he bursts into tears saying that he doesn't want to go to school. That night was supposed to be about Sam doing a good job and his frustrations from school robbed him on this good feeling and that hurts me. All I can do is say, "I hear you and I am sorry." The next morning he wakes up and cries because he has to get up and do the school thing again when the day before he arrives home from the bus sobbing because he had a hard time with another child and the bus driver turns up the music on the bus. All I can do is say, "I hear you and I am sorry."
So how does this all effect me? I too wake up in the morning with that awful feeling of dread. I got that feeling again of a weight that makes it hard to walk, talk and function I sit for thirty minutes and look at my house and feel overwhelmed. I force myself out of the house to go to the gym and lift weights. The feeling of people surrounding me makes me feel like I want to run. I want to run home and hide. I get through it. I don't feel better but I know I did something for myself.
So what is next. Oh yeah, the dishes. I look at them and again feel that heavy weight. This is the biggest misunderstanding of having a Mental Illness. We are not lazy. When I feel this way I don't have complete thoughts as I do a round robin walking around my house taking note of what needs to be done. It takes all my strength to walk over to the sink and do the necessary steps. 1. Put the dry dishes away. 2. Take out the dirty dishes and fill the sink with soapy water. 3. Wash the dishes. 4. Wipe the counters. I keep telling myself, "You can do this." I well up in tears and think, "For cripes sake, they are only dishes! Why are you crying?"
There are so many negative thoughts that live in my head that I have to ignore.
I finish the dishes with the hopes of getting a feeling of accomplishment. The feeling never comes. Instead I try to get over my thoughts of the night before. I sat and listened to the keynote speaker at the Got Dreams Awards and I hear her say that if we not only listened to our kids when they are young. Who is listening to Sam besides me? I need people to listen that can really do something about Sam having a difficult time at school. Who is going to be the one that changes the course of my son's life and well being? Who is going to step in and say to Sam, "I am going to make it better." The evening ended with me running into a guy who asked me if I am still working at Hillside? "No", I replied, " I was working with a temp agency and the Peaceful Initiative Committee at Hillside and I am no longer called." I walked away hearing his response, "That is too bad." I was getting a lot out of my involvement and now it is gone. A person with a Mental Illness is not lazy and we do want to work.
I start cleaning off the kitchen table and I sort through Sam's dittos from school. I went to college and received my teaching certificate and I worked as a teacher. I know that these dittos are ridiculous. I dislike Sam's school all the more. OK, what's next? Oh yeah my room. I try my best to make my bed to only lie in it a few minutes later to sleep and block out the world. This is the part where I totally get Sam sleeping in school for avoidance. He is communicating to the professionals that are there to help him, "I don't want to do this. I am not happy." It doesn't take a rocket scientist to figure that out.
My day ended with me feeling better around 5 pm. This is how my illness works when I am not feeling well. The mornings are scary, the early afternoons I have to fight to pull through. The chains of the illness let go at night. I can get things done. Days like this is when I know that I am truly a survivor.
*I wrote this a couple of days ago when I was having such a difficult time of it. I feel much better now. A very dear friend spent some time listening to me and it made all the difference in the world. He made the choice to not walk away. This is the ebb and flow of my illness. It is what it is. Now I have to get back to work helping Sam.
Definition of Mental
So how does this all effect me? I too wake up in the morning with that awful feeling of dread. I got that feeling again of a weight that makes it hard to walk, talk and function I sit for thirty minutes and look at my house and feel overwhelmed. I force myself out of the house to go to the gym and lift weights. The feeling of people surrounding me makes me feel like I want to run. I want to run home and hide. I get through it. I don't feel better but I know I did something for myself.
So what is next. Oh yeah, the dishes. I look at them and again feel that heavy weight. This is the biggest misunderstanding of having a Mental Illness. We are not lazy. When I feel this way I don't have complete thoughts as I do a round robin walking around my house taking note of what needs to be done. It takes all my strength to walk over to the sink and do the necessary steps. 1. Put the dry dishes away. 2. Take out the dirty dishes and fill the sink with soapy water. 3. Wash the dishes. 4. Wipe the counters. I keep telling myself, "You can do this." I well up in tears and think, "For cripes sake, they are only dishes! Why are you crying?"
There are so many negative thoughts that live in my head that I have to ignore.
I finish the dishes with the hopes of getting a feeling of accomplishment. The feeling never comes. Instead I try to get over my thoughts of the night before. I sat and listened to the keynote speaker at the Got Dreams Awards and I hear her say that if we not only listened to our kids when they are young. Who is listening to Sam besides me? I need people to listen that can really do something about Sam having a difficult time at school. Who is going to be the one that changes the course of my son's life and well being? Who is going to step in and say to Sam, "I am going to make it better." The evening ended with me running into a guy who asked me if I am still working at Hillside? "No", I replied, " I was working with a temp agency and the Peaceful Initiative Committee at Hillside and I am no longer called." I walked away hearing his response, "That is too bad." I was getting a lot out of my involvement and now it is gone. A person with a Mental Illness is not lazy and we do want to work.
I start cleaning off the kitchen table and I sort through Sam's dittos from school. I went to college and received my teaching certificate and I worked as a teacher. I know that these dittos are ridiculous. I dislike Sam's school all the more. OK, what's next? Oh yeah my room. I try my best to make my bed to only lie in it a few minutes later to sleep and block out the world. This is the part where I totally get Sam sleeping in school for avoidance. He is communicating to the professionals that are there to help him, "I don't want to do this. I am not happy." It doesn't take a rocket scientist to figure that out.
My day ended with me feeling better around 5 pm. This is how my illness works when I am not feeling well. The mornings are scary, the early afternoons I have to fight to pull through. The chains of the illness let go at night. I can get things done. Days like this is when I know that I am truly a survivor.
*I wrote this a couple of days ago when I was having such a difficult time of it. I feel much better now. A very dear friend spent some time listening to me and it made all the difference in the world. He made the choice to not walk away. This is the ebb and flow of my illness. It is what it is. Now I have to get back to work helping 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.
Monday, May 7, 2012
Teaching Self Advocacy
Sam and I are driving home from his Music Therapy session and he tells me that one of the men from school threw him into the time-out room and he landed on his behind. His statement wasn't emotionally filled, it was more of a statement of just the facts. The last comment of "he isn't supposed to do that" was what hit me the hardest. Don't we teach our children that we aren't supposed to break the rules? More importantly, doesn't research tell us that our kids with Autism don't lie?
The next day Sam shows his social worker at Easter Seals how the man didn't throw him in the room but opened the door once Sam was in the room and pushed him to the ground. What is a Mom to do? The phone calls start the next morning as I try to find people to help me. I talk to people that say that the school needs to take care of it. Conversations fill the air with other Moms telling their stories of how their kids are mistreated. There are Moms that even tell me that I should bug my child with a wire to record actual events at the school. I am tempted.
This is what I hear Sam say.
Two days later I am driving with Sam and he changes his story. He tells me that he doesn't remember what happened. My ears perk up and my instincts start churning with a feeling that doesn't feel right. The next day I start asking him questions and he informs me that the Principal sat down with him and told him that what he is saying about the man pushing him is not true. I send an email to the principal with a cc: to the superintendent of the school. She emails me back saying that she had never talked with Sam. Sam sticks by his story.
People ask me, "Does Sam ever lie?" The answer is no. There has been a few times that I recall where he tries to tell a white lie but it never really works out. He has to tell the truth.
All of this hurts. I will be sitting trying to be rational and pain will well up until I double over in tears. My inner child is screaming as I stuff my face with food until I get that feeling of getting an internal hug. Sam seems to be OK but I really don't know. I talk with Sam about maybe moving going to a new school and he asks me, "What happens if it is worse?" This doesn't sound like a kid who is telling stories.
For now all I can do is talk about the pain. I know that there is a huge hole in the school system for our kids. Our kids with Autism understand the world differently than our neurotypical selves. We learn how their sensory systems and wiring of their brains make decoding the world and our rules so difficult. Haven't we heard how Temple Grandin says that she feels like an alien visiting our planet?
The school sticks by their conviction that if Sam gets out of control that he is isolated from his peers. I am taught that our kids behaviors are a way to communicate their needs. I am also taught that if something doesn't work you go back and try something different. It doesn't seem fair to place all the responsibility on an eleven year old child that needs support to learn how to follow their rules.
For now I will tell the school that I no longer support their behavior plan. I will advocate for Sam to start having a voice and for him to be able to tell the school how he feels. I will teach Sam that he is important. I will show Sam through my example that it is important to be heard.
Definition of Mental
The next day Sam shows his social worker at Easter Seals how the man didn't throw him in the room but opened the door once Sam was in the room and pushed him to the ground. What is a Mom to do? The phone calls start the next morning as I try to find people to help me. I talk to people that say that the school needs to take care of it. Conversations fill the air with other Moms telling their stories of how their kids are mistreated. There are Moms that even tell me that I should bug my child with a wire to record actual events at the school. I am tempted.
This is what I hear Sam say.
Two days later I am driving with Sam and he changes his story. He tells me that he doesn't remember what happened. My ears perk up and my instincts start churning with a feeling that doesn't feel right. The next day I start asking him questions and he informs me that the Principal sat down with him and told him that what he is saying about the man pushing him is not true. I send an email to the principal with a cc: to the superintendent of the school. She emails me back saying that she had never talked with Sam. Sam sticks by his story.
People ask me, "Does Sam ever lie?" The answer is no. There has been a few times that I recall where he tries to tell a white lie but it never really works out. He has to tell the truth.
All of this hurts. I will be sitting trying to be rational and pain will well up until I double over in tears. My inner child is screaming as I stuff my face with food until I get that feeling of getting an internal hug. Sam seems to be OK but I really don't know. I talk with Sam about maybe moving going to a new school and he asks me, "What happens if it is worse?" This doesn't sound like a kid who is telling stories.
For now all I can do is talk about the pain. I know that there is a huge hole in the school system for our kids. Our kids with Autism understand the world differently than our neurotypical selves. We learn how their sensory systems and wiring of their brains make decoding the world and our rules so difficult. Haven't we heard how Temple Grandin says that she feels like an alien visiting our planet?
The school sticks by their conviction that if Sam gets out of control that he is isolated from his peers. I am taught that our kids behaviors are a way to communicate their needs. I am also taught that if something doesn't work you go back and try something different. It doesn't seem fair to place all the responsibility on an eleven year old child that needs support to learn how to follow their rules.
For now I will tell the school that I no longer support their behavior plan. I will advocate for Sam to start having a voice and for him to be able to tell the school how he feels. I will teach Sam that he is important. I will show Sam through my example that it is important to be heard.
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.
*Mina made me the cover for my kindle.
*Mina made me the cover for my kindle.
*The photo that I use for my background was taken by Sam.
Thursday, April 5, 2012
My Kindle
Sam and I are on SSI and SSD and I can’t afford many of the luxuries that others may be able to afford. Getting assistance is a hard thing to admit because of the guilt associated with the thoughts of people saying, “You are the reason why our country is a mess! Get a job!” How do you say to a prospective employer, “Hi, my name is Debra and I have a mental illness and my son has Autism?” That isn’t really what I would say but how do I keep a job when I am always asking for time off? Any mom out there that has a child with Autism understands what I am saying.
I have spent the last eleven years researching for my book and I started my blog to get my written word out there. There are countless times when I stand in front of the many binders filled with research and feelings of defeat wash over me. How will I find anything? I can sit for hours as I scan in papers and try to figure out what name I can file it under in my e-book so it can be retrievable.
What I am leading up to was my desire to buy a Kindle. I saved all of my family reimbursement money to buy one. I am an avid reader and I wanted one place to keep all of my research. I can now add my kindle to the list of my wordly possessions that include my car, computer, TV, phone and Sam's camera. It is really all I need.
I took a break from reading to learn how to knit. It sounds silly but I met a wonderful woman who was willing to teach me. I wanted to learn how to make throws to donate to women that are going through Breast Cancer. I remember the cold making a home in my body as the chemo meds dripped through my veins. I traded reading for knitting as I sat with Sam through all of his appointments and times when I am the only one to supervise his activities. I needed a break from all of the words that danced around in my head.
I am now able to knit so it is time to get back to my research. I want to read A Thorn In My Pocket by Temple Grandin's Mom, Eustacia Cutler. I am having a hard time spending the money for my first book so I downloaded the free prologue. I started reading and it was clear to me why I took a break from the written word. This book is going to be painful to read.
What got me was how she talks about Temple Temple Grandin
Ms. Cutler continues to talk about the holes in her life and I totally get it. My first mental breakdown was when Mina was six months old. I had gone off my meds to protect her during my pregnancy and the Bipolar and Post Partum Depression got a hold of me. I separated from my marriage and moved into my parent’s home. I was unable to take care of myself or Mina. The only thing I remember of Mina‘s first years of life was her first birthday. Images flash in my head of family guiding her to open up the presents as I sat on the couch unable to hold her or help her. This is a painful memory as I put up my self protective shield so the guilt doesn’t get me.
I try not to think of what my life’s experience has done to Mina's psyche. I can only think of good things as she lives her life and how she works so hard to get what she needs. She is a part of the many siblings that get what having a disability means as she stands up for others that are unable to stand up for themselves. I marvel at her ability to shine against diversity. I was unable to buy her clothes so she learned how to sew and designs clothes of her own. I love her beyond belief and am going to miss her when she graduates to the next frontier of her new life. She is my rock that keeps me grounded as life’s twists and turns shake me from the unpredictability of living life with Sam’s and my disability. Mina is nothing short of amazing and I thank her for letting me share my thoughts of raising an incredible daughter.
I am only on the first page of the prologue and already I am itching to write. As I read tears streamed down as all of the memories started breaking down my protective wall. This is going to be a tough one.
Sincerely,
Debra Pierce Bellare
Definition of Mental
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.
*Mina made me the cover for my kindle.
*Mina made me the cover for my kindle.
*The photo that I use for my background was taken by Sam.
Sunday, March 25, 2012
My New Normal
I was having a conversation with a good friend and he was talking about how I talk down about myself at times. I look at him with the response, “What? I am happy. What do I say?”
What I talk about is my hair before cancer. I have to be honest, the two things I loved most about myself was my hair and the other part of my body that became disfigured because of cancer. I look at my scar that is about four inches long and I sometimes long for the days when I felt beautiful.
What I tell others is that beauty is on the inside and not the outside. I really truly believe this but somehow I have a hard time turning this advice around to myself. All the years of abuse and being told I am not good enough are difficult things to erase from my self talk.
As I talk to my friend about my past life before cancer I really think about how I feel about looking different after cancer. My life before cancer was filled with dangerous relationships and self harming. I used my beauty to attract dangerous people because I needed fast self affirmation that I was good enough for someone. Being Bipolar meant that I loved fast and hard. For the most part that feeling of love was mostly lust and a wish to be loved. How I was before cancer really got me nowhere.
I believe in divine intervention as everything stopped when I crumbled after chemo. I get to start fresh after hitting rock bottom like I have never hit bottom before. It took me two years to crawl out of that evil hole that tried to wrap its roots around me. I would sit in group week after week with my dark hoodie wrapped around my head while tears were shed as I would talk about my wish to get better.
Today I think of my cancer as a rebirth. Today I am better than I have ever been before. I am working with my new normal. I will learn how to look at my scar as a sign of survival because as of now I am four years cancer free and I am able to function outside in society. I am victorious as I fight for my son and his ability to learn positive affirmations about himself. I have a beautiful daughter who is about to go out in that big open world. For the first time, I am not lonely and I don’t lust for that self affirmation from somebody else.
It is now time to work on myself. I need to look at myself and say that I am beautiful. I have to fake it until I make it. Because of my dangerous behavior, I lost the friends that I had before cancer. I look forward to letting the new friendships grow that I now have. I will not jump into a relationship for self affirmation. I will wait for the day when I meet that friend and after time realize that it could be more. I will learn how to love myself first.
*Sam took this photo for breast cancer awareness.
Definition of Mental
*Sam took this photo for breast cancer awareness.
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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