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.