My Letter to the Congresswoman

Congresswoman Louise,

Thank you so much for the opportunity you have given Sam to be your "Official" Campaign Photographer. One of the lessons that you have taught him is that with hard work and dedication you can be successful. I would like to take a few minutes of your time to make you aware of what is happening to your personal photographer at the Morgan Campus #1 BOCES. There is a windowless closet on the second floor at the school between the bathroom and the classroom. It has a dirty floor where kids become upset to the point where they urinate. The door has a 4x4 window with a gray film and the last time I saw the door, the window was cracked. Sam has been restrained on multiple occasions at this school. Last year Sam reported to me that while he was trying to get out of the closet the security guard opened up the door and pushed him to the ground. This year he said that the security guard crossed his arms around him, lifted him off the ground, took him to the closet, opened up the door, turned and dropped him to the ground. I have tried to investigate but Sam isn't talking. In his words, "It wouldn't help." My child feels helpless in a school that is supposed to be there to help him.  

Unfortunately, the same practice happened to Sam in first grade at the Longridge School in Greece. Their Time Out Closet with the tiny window, the last time Sam was six years old, was just passed the office. I personally witnessed three men on top of Sam face down while waiting for the police to make a Mental Hygiene Arrest. Sam spent sixteen days in a psychiatric institution and he still remembers that time as when "He was bad".

Sam is a depressed boy and this is the reason why I work so hard on his photography. I have to work twice as hard every time the school tears him down. His depression is at an all time high this year and it is because he is angry and he says "bad things always happen to me."

I have included the link to the ABC News investigation dated November 30, 2012 that describes harmful practices on our children. If there is one thing you can do for me, it would be to watch this video. Often times these practices are used on our children with Autism. The last death that I am aware of happened to 16 year old Corey Foster from New York City last April. I grieve with his Mom, Sheila Foster, who will no longer be able to hug her child. I fear for my son on a daily basis. I want to feel safe that my child will return home to me.

http://democrats.edworkforce.house.gov/blog/abc-news-investigation-students-hurt -dying-after-being-restrained

It is written in the ABC Report: A recent investigation by the U.S. Government Accountability Office found hundreds of allegations that children have been abused, and some even died, as a result of misuses of restraint and seclusion in public and private schools, often at the hands of untrained staff. Unlike in hospitals and other medical and community-based facilities that receive federal health funding, there are currently no federal laws addressing restraint and seclusion in schools. This is the link to the Committee on Education and the Workforce.

http://democrats.edworkforce.house.gov/issue/seclusion-restraint

I applaud the efforts by Democratic lawmakers in Congress to pass legislation that would prohibit such dangerous interventions. In 2011, Rep. George Miller, the senior Democrat on the committee, re-introduced The Keeping All Students Safe Act (H.R. 1381). The Bill needs to be reintroduced so that legislation can be created for national standards for the safety of children in schools. There needs to be a process of collecting data in a centralized registry where research happens for better practices based on the statistics. As it stand now, us parents fear for our children's safety each day that we send our kids to school. This is a well kept secret that needs to be spoken about.

I am personally on facebook pages of parents trying to make changes. Parents also contact me to see what can be done. I have seen too many photos of bruised children and have heard too many stories of children not coming home to their parents. The deaths of our children go unnoticed.

I would like to leave you with a story of a Mom in Ohio. Her name is Helena Stephenson. She is a survivor of restraints and seclusions. This is the link to her story.

http://www.disabilityrightsohio.org/news/restraint-seclusion-testimony-osbe-marc h-2012

If you can help in anyway, I would be grateful.

The picture I have included was taken by Carol Klino, the Photojournalism student that you met on Friday. It was taken last week.

Thank you,

Debra Pierce Bellare, Sam's Mom

 

 



 

I sent an additional email.

Congresswoman Louise,

This is a video of Paula Cummings, an advocate at St. Joseph Villa.

This is her presentation on the issue of restraints and the need for better regulations to keep our kids safe.  It is a wonderful explanation of what is needed.

http://www.youtube.com/watch?v=ZT682h4RNlo

It would be my honor if Paula and I could visit your office to talk about these issues.

Sincerely,

Debra Pierce Bellare

Should my child learn how to Self Advocate?

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

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.

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.

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

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.

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.

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.

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 in New York City.  This individual looked for services and was denied help.  If our society was more willing to help this troubled man, this woman could be alive today.  Another example of our society turning the other way was the woman who drowned her children.  There was no talk about Domestic Violence that left her feeling like she was going insane.  I don't believe that Mr. Scarborough was saying that all individuals with Autism have a Mental Illness.  He was stating his frustration that all of us feel for the lack of services that leave us feeling helpless.

I think about Sam and his issues with the Greece School District's bus.  My son works hard every day to survive his bus ride.  At his last counseling appointment he rolled himself into a fetal position crying saying that I am not doing enough to help him.  How many situations was an individual under severe duress while making the jump to being unable to make sane decisions.  I am working overtime to resolve this issue that leaves my son feeling like he cannot defend himself.

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.