Please Bring Sunflowers

Sunflowers are my favorite flower.  When I lived in my hometown when My Mina was little I had a field of sunflowers in my yard.  My dad would bring his rototiller and build me a small field to plant my seeds. My memories are filled with my small four year old daughter watering the small space that my dad had helped me build. They would grow into these beautiful bursts of colors of a rainbow of orange, brown, golden yellow, maroon, and reds.  I would sit on my back steps and watch them and besides loving my children it was one of the best feelings I have ever had.  In September they would start to wilt and die and the seeds would start to mature.  My favorite thing would be to walk to the small field, clap my hands and watch hundreds of birds fly out of their feasting ground.  I did it every year.  I miss my small field of peace.

I have a tattoo of a sunflower on my right shoulder to always remember my small space of heaven. Sunflower to me represent good mental health.

I had my first nervous breakdown when I was 30.  I had almost lost my daughter and my Mom saved me by coming to get me the day before they were going to take My Mina away from me.  I lived with my parents and I didn't leave their house for a year.  I was very ill.  It is unfair to call a mental illness an illness because today I am still diagnosed with Bipolar but I am not ill.  I was ill when MY Mina was little.  I finally got on my feet and I moved a few blocks away from my parents.

One of my favorite memories was visiting my elderly neighbor and she would talk and talk about how much she loved my sunflowers.

Sunflowers also make me think of my funeral.  The only flower that I want at my funeral are sunflowers.  If you happen to come to my funeral and you bring me a rose, I have already asked a friend to turn them away.  That may sound rude but that is just the frame of mind I am in today.

Thinking about my funeral also makes me angry because I sure do hope I live long enough to see Sam's success.  Just like when My Mina was little  remembering her watering the sunflowers,   I also remember Sam's first picture that he took with his camera.  It is the same type of memory.  MY Mina grew into this amazing, talented, fun loving, wonderful, intelligent girl that I almost missed having the pleasure to raise.  I didn't get to miss it.  I don't want to miss seeing who Sam is going to be.

I am going backwards in my story starting at the ending but the ending is what it is all about.  Autism is awful but it isn't my son who has Autism that is awful, it is people's reactions, misinterpretations and misconceptions that are awful.

The goal for Sam is to learn how to self advocate. For six weeks I got the reports that he was restrained and he had trouble in Music and they don't know why, blah, blah, blah and it ended up that he had to sit and listen to wheels on the bus with all of the versus with the windows and the doors and the babies.  Yeah, he felt he was going insane I am sure.  High pitched, infantile things don't go well with Sam.  Anybody who knows Sam knows that.  I told the school that and when I found out the IEP coordinator apologized blah, blah, blah, blah.  Sam now has an appropriate music class.  "Yeah for Sam!"

So now I am getting the reports that he has appropriate functional skills from the OT and a whole bunch of other round robin wheels on the bus go up and down language where I just don't understand their point.  I get a note today that Sam flipped off the teacher with both hands today.  That is Sam's new thing.  He first would flip you off with his pointing finger and after he got comfortable with that he moved to the middle finger and then it was full throttle with both hands fingers straight up in the air.  He got that from me.  I think he inherited it.  I did the same thing when I was little.

The note from the teacher today said that he won't choose a break card.  The goal is for Sam to self direct to take a break.  Sam won't choose the break card.  Why won't Sam choose the break card?  I told the teacher I would talk to him and find out what I could and I would get back with what I find.  The teacher is trying really hard to communicate with me,, even though he is probably scared of me, (I mean I am Bipolar and they know it) and I tell him how much I appreciate the communication.

Sam and I were driving today and I am asking him questions and he doesn't want to talk about it and he finally said he doesn't want to talk about it because nobody will do anything about it anyway.  Well, I am a pushy thing and I finally got that he gets stuck on the first break card.  What is the first break card?  To take an animal walk.  I just about had a heart attack, I will get back to that at the end of this little story.

All the break cards are babyish.  They are all just like Sam having to sit in Music Class and listen to The Wheels on the Bus.  I am furious.  Sam did advocate and asked the OT for more age appropriate breaks.  She said that it will take time.  Well, Sam doesn't have any concept of time.  I told them that.  So instead he got frustrated and flipped them off with both hands.  I don't blame him.  He tried.  He did what his goal was...to self advocate.

I am now on high blood pressure medication and 81mg of Aspirin.  I have an emergency stress test because I keep getting shortness of breath and pains in my chest.  That was my point about the sunflowers.  I want to make sure that everyone knows to bring sunflowers to my funeral.  I don't plan on dying, this stress can become unbearable.  I am doing this all myself.  I will make sure I take the aspirin and drink lots of water before I go to bed.  They say that helps.

Don't forget the sunflowers.

Definition of Mental

1. a: of, relating to, or being intellectual as contrasted with overt physical activity.

2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.

b: mentally disordered, mad, crazy.

I choose being an intellectual as my definition of being mental.

*The photo that I use for my background was taken by Sam.  You can find more of Sam's work at https://www.facebook.com/SnapshotsBySamMaloney

Joe

Sometimes I sit down to write when I have a thought and I ask myself, "Where am I going with this?"  I am always wondering how I can effectively communicate to keep the interest of the reader from the beginning to the end.  I am always wondering if the flow makes logical sense and I sit, write and hope.  That really is all I can do.

My thought today, with all of its twists and turns is, "Am I truly on my own?"  Let me explain.

This post is really about Joe, Sam's Music Therapist.  I digress, Joe was Sam's Music Therapist.  Joe has accepted an alternative place of employment which is truly his dream job.  I am being totally unselfish when I say that I am truly happy for him.  I really am, I really am, I really am...No really, I really am happy for him.  My selfish childish self really isn't happy.

So where do I go from Joe leaving to me being grounded enough to accept the loss.  Here is the thing, Joe was like family.  He met Sam when he was six but my selfish self isn't thinking about Sam.  I am thinking about how much Joe helped me.  Wonderful Music Therapists become wonderful Music Therapists when they include the family. Well heck, any good therapist includes the family.  Joe included me.  I learned about sensory regulations, executive functioning skills and I learned to let Sam be Sam.

Joe was the guy who I got to know when I was diagnosed with Cancer.  Joe was one of the few individuals who saw me with no hair.  That is real vulnerability when you are bald.  Joe saw me go through my debilitating illness where the agoraphobia was so bad that the only place I went, besides grocery shopping, was to take Sam to Music Therapy.

Joe was the guy who supported me when I came up with the idea to place a camera in Sam's hands to put his photos on facebook so people could comment and he could learn how to read by reading the exceptional comments left by so many caring individuals.  What would our life look like if we hadn't found Joe.  What if I never asked, "Hey Joe, can we incorporate the photography?" or heard, "Yeah, definitely!"

I am now at that place.  I now know what life is like without Joe.  I had to say goodbye.  

My thoughts with their twists and turns are trying so hard to find their final resting place of where I am at with my loss.  It was later that day when the police showed up at my house because my son had a meltdown.  I didn't contact Joe.  Joe is no longer Sam's therapist.  I have a disconnect now because I no longer have any personal ties with the place I once called my second home.  

I had nobody to contact who works with Sam, nope scratch that.  I contacted Sam's service coordinator.  I have to tell him when the police come to my home.  It is in the rules.  I obey the rules.  Still waiting to see if an investigation will be made with the Developmental Disability Service Office.  OK, second scratch that, I contacted one of Sam's workers.  He told me I crossed the boundaries and was not allowed to contact him.  


That is when I felt the loss.  Joe would of let me contact him.  He would of listened.  He would of said, "I am sorry, I don't know what you are going through but I support you"  He was one of a kind. Yeah, I feel totally on my own when it comes to communicating with people who work for Sam.  I know that they do not work for me.  It will be OK.  Change is good for Sam.  Sam will become a better person by being able to work with different people. 

Change can be good.

Good Luck Joe on your new dream job.  I look forward to the day when we toast to Sam's good fortune.  I expect you to be at his wedding.  You better be there.  If not, I am going to be very angry with you. :)  

Lots of  Love, (from someone who admires you greatly)

Debra, AKA Sam's Mom.

Sam's first photo taken after Joe taught Sam how to hold the camera.  I will never forget that it was the first weeks of January 2011.  

Joe and Sam August 2012.  Joe is the guy that influenced Sam to gain the courage to stand on stage.  I will never forget it.

Am I truly alone?  Absolutely Not!  I will just miss this relationship with one of the best workers Sam will probably ever have.  No offense to anyone who is working with my boy.  The best is yet to be seen.  I am looking forward to the good stuff, the untapped stuff. It is going to be really good stuff!

Definition of Mental

1. a: of, relating to, or being intellectual as contrasted with overt physical activity.

2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.

b: mentally disordered, mad, crazy.

I choose being an intellectual as my definition of being mental.

*The photo that I use for my background was taken by Sam.  You can find more of Sam's work at https://www.facebook.com/SnapshotsBySamMaloney

I Wish I Could Change the World

I don't have a clue what to call this post.  I stare at the computer screen and just wish that the use of Seclusion Closets would be banned and people would be forced to make better choices regarding our children.

Here is what prompted this post.  I was talking with someone and she said, "My friend's son needs to be in those rooms.  He prefers to be in them."  Whoa, did you just say your friend's son needs to be in those closets?  My internal alarm goes off and my brain says, "Take a step back and breath."

I am surely not going to be the most popular kid on the block for voicing my opinions.  They are just my opinions after all and nobody has to agree with me.  My thoughts also come from my personal experiences with my child so here it goes.

1.  I believe that there is a difference between a restraint and a hold.  A hold is when people hold the part of the body that needs to be contained.  I am basing this opinion on personal experience.

My first experience was when Sam was 6 years old and they had him face down in a prone restraint.  They should be illegal and they are in only a few states.  Three grown men had his hands behind his back with there knees on him so he couldn't move.  Six years old. That is a restraint.

Grabbing a child and dragging them kicking and screaming down a hallway into a seclusion closet is a restraint.

Three weeks ago Sam was in crisis and he put his foot through the wall.  They held his legs, Sam was face up, so he couldn't put his foot through the wall again.  That is a hold.  I sat and watched the entire thing happen.  Nobody had the intent to hurt him, the only intent was to keep him safe.

There is a difference.

So what fueled my anger?  Was it that I am sure that this person doesn't really understand the inner turmoil that the Mom (or Dad) goes through when these events happen?  Or is it my own personal experiences that flash forward in an instant when comments are made regarding seclusion closets?  

I am almost positive that nobody likes to sit on a hard cold floor leaning up against a cold hard wall with a prison like window.  It is me that sits with the knowledge that I had an educator tell me that Sam chose to sit in that room.

This was my conversation with the educator.

"You mean to say that you had my son in that closet for 30 minutes?"

"Sam was only upset for 20 minutes and was calm for 10."

"You mean that you had my son sit in that closet for 10 minutes calm?"

"Yes, he did it by choice."

That afternoon..."Hey Sam, did you sit in that room by choice?"

"No."

"Did anyone give you the option to leave the seclusion room?"

"No."

I bet that the educator is telling that parent that their child likes it.  I am figuring that the child does not have the oral capacity to talk.

I might be totally wrong.  Again, I can't imagine that any child likes to sit on a cold floor leaning against a cold wall.

And of course there is the time when the principal of the school showed me their seclusion closet and said, "Isn't this nice?" GGRRRR.  I told him, "No, it is criminal."

I have to laugh because I am still on #1.

#2.  Say no to Seclusion Closets.

That is all I have left to say.

Definition of Mental

1. a: of, relating to, or being intellectual as contrasted with overt physical activity.

2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.

b: mentally disordered, mad, crazy.

I choose being an intellectual as my definition of being mental.

*The photo that I use for my background was taken by Sam.  You can find more of Sam's work at https://www.facebook.com/SnapshotsBySamMaloney

Do We Have the Right?

This is my rebuttal of a blog post that I saw earlier today.  I don't know exactly how to paraphrase but I think the point the blogger was trying to make is that Autism Parents can be just as cruel as Neurotypical Parents.  The only reason why I am reposting is because I feel the need.  It is the same for all of  us bloggers, I believe.

Let me digress.  The post basically said that Autism Parents lash out when Neurotypical Parents talk about their kids successes and Autism Parents find that offensive because they can't relate to the real struggle that is Autism.  I have no clue if I got all of that right.  I will admit I am basically clueless when it comes to what point she was trying to make.

The post started out with this. "This post isn't probably going to be spectacularly popular in the autism parenting community.  I want to give a little love to the parents of neurotypical kids, pejoratively "normies."

I had to look up the word pejoratively which means "having a disparging, derogatory, or belittling effect or force."  I then had to look up the word disparaging which means "tending to belittle or bring reproach upon. The one thing I can thank this blogger for is a good vocabulary lesson.

I am going to start my rebuttal with my point.  Wow, this particular person has clearly gotten her feathers ruffled over something.  A "friend" perhaps?

I am a parent of a neurotypical and a child on the spectrum.  It is two different worlds.  My one world was filled with a daughter who excelled.  Life was tough for her because she had me as a Mom and she had a sibling on the spectrum.  She persevered and she has conquered.  I could not be more proud of her.  I cry every time I think about it.  This is a child that came from me and I filled her life with my problems and she still found her way.  Kudos to my daughter.  I love you honey.

I believe that "us" Neurotypical/Autism parents live in a Bipolar world.  Did I like living in the neurotypical world?  Absolutely not.  I didn't like who I had to hang with one bit. Sorry, but it is true.  The friends that I have live in the world of Autism. (or anyone who has struggled with something) It isn't anyone's fault and by no means do I think the neurotypical world, with little Autism understanding, is bad.  It isn't.  Basic human social needs revolve around needing to be around people who "get" it.  Simple. You also can't know what you don't know.  I can't expect anything different.

I love my daughter so much that at times it hurts.  There is no love like a mother's love.  I am not going to love my child any less because she is neurotypical.  No way.  All mothers, with the exception of a few, fiercely love their kids.  When they hurt we hurt.  It doesn't matter where they lie on the spectrum called childhood.

My son?  The last eight years have been tough.  I have been living in a world filled with anger and resentment.  It has mostly been this way because I wasn't heard and my child's needs were not met.

It is our job as parents of kids on the spectrum to teach others.  We all need to do it with kindness.  We all know that the lines of communication end when it is filled with anger.  On that note, I do realize that I am not particularly being kind to this particular blogger.  Yeah, it ruffled my feathers.

I think that people who lash out are angry.   I have to feel bad for the person who gets in the way of our anger.  It is nothing against them.  They were just in the wrong place at the wrong time.

What will I get mad at?  There is nothing worse than telling someone who works in a grocery store that your child has Autism and I have to pick my battles, when my child is doing something to upset the other person.  I get mad when said person says, "I don't care."  Yeah, she got it from me.

I will end with this.  I realize that it is person first language and the parent and the child comes first.  It should be, in our political correct world, the parent of a child with Autism and a child who is neurotypical.  Maybe I will write about that in my next post.  I just wanted to keep with the theme of the previous writer. 

Definition of Mental

1. a: of, relating to, or being intellectual as contrasted with overt physical activity.

2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.

b: mentally disordered, mad, crazy.

I choose being an intellectual as my definition of being mental.

*The photo that I use for my background was taken by Sam.  You can find more of Sam's work at https://www.facebook.com/SnapshotsBySamMaloney

What To Do During a Meltdown.

I am not feeling very positive today and I wanted to name this post What Not To Do During A Meltdown but I will be kind and do my best to give helpful information as it pertains to my specific child.

1.  If you see a child hurting, a parent (or guardian) is hurting right beside them.  As a parent I don't know how to distance myself from the pain I see on my child's face.  I don't know if I ever will.  I always see pain when Sam is melting down.

2.  If you are not raising a child on the spectrum you do not know how I feel.  If you feel compelled to say something it is helpful to say, "I am sorry, I do not know what you are going through."  I can't explain how helpful this is.  There is nothing worse than talking about my child and a 20 year old says, "Yeah, I can relate." If you work with our children and you don't have a child on the spectrum please say, "I wish I could relate, but I can't."  You can even say, "I am sorry, I wish I had more understanding of what you are going through."

My favorite posts from one of Sam's fans said this.  I am paraphrasing, "I would yell and say walk a mile in my shoes and then throw my shoes at them."  Ha!  I find that hysterical.  I am sure the person throwing the shoes didn't think it was funny.  After the fact, I think it is a creative response.

3.  If anyone feels compelled to say something derogatory to a parent during a meltdown I can almost 100% guarantee that the parent will not be kind to that person.  We have been through so much and the child?  I can't imagine.  I am not diagnosed with Autism.  I do have an understanding of growing up with a Mental Illness. Growing up with an undiagnosed Mental Illness was painful for me.  I get a little bit of it.

I keep on writing what not to do because we live in a negative society.  I will try to do better.

4.  If a person is in a managerial position and that person has to over see the meltdown, please either sit on the floor or sit in a chair.  If you can't find a chair, find someone to find you a chair.  Standing over the person having the meltdown doesn't help even if you are a few feet a way.  It would be my perfect world if a person sat down and placed their hands in their lap in a non threatening manner.  A child with Autism might not understand it but the parent does.  Standing with your hands behind your back or across your chest doesn't help at all.

5.  If anyone feels compelled to help, be prepared to sit down next to the person and be prepared to not say a word.  Just sitting next to a person or sitting off center helps.  Do not speak.  Please say nothing.  If a person wants to help and they just don't have 20 minutes to spare to sit and say nothing, walk away.
It is very helpful when people are not helpful.

6.  If Sam is having a meltdown in a crowded room and he perceives that a group of people are giving him a hard time, I pull up a chair to block his vision.  I remove the stimulus.

7.  I do my best to never talk during a meltdown.  I sit and I wait.  Talking during a meltdown doesn't help.  Trying to reason doesn't help. Yelling doesn't help.

8.  Never say, "My sister's son has Autism so I understand."  No you don't.  Never say, "My neighbor has Autism so I understand."  No you don't.  The only time I don't take offense is when someone says, "My neighbor's son has Autism and I see how difficult times can be for her/him."  You can always say that you can see the pain and you feel bad for that pain.  Never, ever say that you understand if you are not raising a child with Autism.  A person just might get a pair of shoes thrown at them.  It is a trigger for us parents.  Trust me.

9.  If you are driving in a car and a child is having a meltdown, pull over and sit and wait.  I do this all the time.  I have had cops pull over and ask if I needed help.  I always say, "nope, I just don't want to get in an accident"  If you have the parent in the car with you, sit and be quiet.

10.  The meltdown isn't bad parenting.  I would love to have more understanding.

11.  Never say walking past a meltdown, "Been there, done that!"  That is not helpful.

I can't think of anything else right now.  Please feel free to add your own list.  There might be something that I am forgetting.

Debra Pierce Bellare, Sam's Mom.

Definition of Mental

1. a: of, relating to, or being intellectual as contrasted with overt physical activity.

2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.

b: mentally disordered, mad, crazy.

I choose being an intellectual as my definition of being mental.

*The photo that I use for my background was taken by Sam.  You can find more of Sam's work at https://www.facebook.com/SnapshotsBySamMaloney

Being BiPolar

How do you spell BiPolar?  Or is it just Bipolar?  It doesn't really matter how you spell it or what part you capitalize.  Well, maybe to those that have to be grammatically correct and I am not one of those people.

I don't want anyone to feel sorry for me, but I do want people to understand how difficult it is.  Pick yourself up by the bootstraps?  Doesn't work.  The numbness sets in, the inability to take a shower kicks in and the unbelievable sadness sets in.  I take a shower, I put one foot in front of the other and I take care of Sam.  I do it while I hurt.

I love my two children with everything I have.  One has left the nest and we all know it is better for all of us because of Autism.  It is killing me.  It feels like a knife in my heart.  I get it but it doesn't stop the tears.  Autism isn't easy for any of us but we live with it and I, at the helm of the house, have to do what I can with it.  

What is it now?  1 out of 50 families live with Autism?  That is one out of 50 families who are set up to have family walk away, loss of friends, loss of jobs, or some of us with BiPolar, the loss of our kids.  I have almost lost my kids three times in my life and I am worried sick that someone, basically Sam's Dad, will try again.  I am even running the risk by talking about it and well, I will cross that bridge when I get the court papers.  I have had CPS at my house around 10 times in the last year.  I have to tell my son that when he confides in someone that maybe the bathtub isn't as clean as he would like it that he has to keep his mouth shut.  (My bathtub is so stained and I can't get the stains out)

Sam has been out of school for about 34 school weeks.  I need to understand why people can't see his talents and what he is capable of.  I don't understand why my Autism Community hasn't rallied behind my son.  Sam has almost 4,000 people on his facebook page: Snapshots by Sam Maloney and the people in the box are more supportive than the ones who I actually want to support Sam.  

It is lonely sitting in my house alone while I hear the cold whip of the wind.  I know I need to get to the gym and I know I need to eat better because of having past cancer.  I will try better tomorrow.  

I know who are the people who care about me outside of my computer.  It is very difficult to be around someone who is sad.  I wouldn't want to be around me at the moment.  I have plans for Sam and myself around getting out and being social and for that I am grateful.  The not so healthy part is that I do everything for Sam.  There is nothing that I do for me.  What I want to do cost money and I don't have it.  Knitting circles cost money and going to the movie cost money.  Even to read a book from the library because I have to pay that fine because of lost books because of poor organizational skills.

The problem at the moment is that I don't feel safe.  I don't feel safe from Sam's Dad, our workers and everyone we come in contact with professionally.  I have to keep my mouth shut and for us that live with a mental health challenge, it is not healthy for us.  We all live in fear that our children will be taken away from us if we speak up that we don't feel so hot.   It doesn't matter what anyone else says because we know because we have lived it.

What would I say to someone who thought, well you better take her kids?  I would say that they are only making matters worse.  I love my son with everything that I have.  I work endless hours making sure he has what he needs.  I make phone calls after phone calls if I don't have something and I work tirelessly to make sure he gets it.  Nobody, and I mean nobody can take care of him the way I do, even when I am sad and I hurt.  

Please don't call CPS if you think that I should be investigated.  I say this to any of my professionals who read this or fall upon it.  The only thing our worker did was hurt me.  People can tell me until they are blue in the face that it is their job as a mandated reporter.  People who are in my home know how well I take care of my children and if there is a problem I take care of it.  The worker was cruel and I never want to see her again and when I do see her I will say hello and walk away.  Apparently she didn't really want to work with us.

Now I wait for the upswing.  It is BiPolar, or is it Bipolar, after all.

Definition of Mental

1. a: of, relating to, or being intellectual as contrasted with overt physical activity.

2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.

b: mentally disordered, mad, crazy.

I choose being an intellectual as my definition of being mental.

*The photo that I use for my background was taken by Sam.  You can find more of Sam's work at https://www.facebook.com/SnapshotsBySamMaloney

I LOVE YOU, I Hate You

You would think that after twenty years of psychotherapy that I would get how my behavior inpacts what happens to me.  I have't "gotten it" yet.  I am still trying.

There is such a thing as "I love you, I hate you syndrome".  It is real and I know it is.  After a series of events, where I "perceive" whatever is happening at the time, I get angry and I feel the pressure building in side of me.  It isn't after one event or two or even three.  It is around the fourth or fifth event where I can't control my inner turmoil and I explode.

This is what I found from a website called "Ask a Biploar".

Sounds familiar.  I watch my son with these same issues of perceiving the world differently.

So how do I correct this?  I don't know the answer.  I attend my therapy appointments and it isn't enough.  I can enroll in Diabelicctal Behavior Therapy and do my best to have things fall off like water beads from a oiled iron skillet. That is a real skill that is taught in DBT.

I have a difficult time writing this because it feels like I am having a downright bitch fest.  "You did this to me!"  Well, no, I reacted to your way of living because I didn't like how I felt at that moment.  There is a huge difference from reacting to your environment instead of saying, "you made me angry."  Becoming angry was my choice.

"I love you, I hate you" is real for me.  It doesn't have to be a boy friend, girlfirend relationship.  It can be with potential friends.  I am so screwed up that I don't know how to be friends with someone.  The fact that I can write that I don't know how to be friends with someone hurts me.  Twenty years of psychotherapy and I feel I haven't learned a thing.  I do know that I am a better person than I was.  BiPolar and it's ugliness made a mess out of my life and I am still picking up the pieces.

I worry about what I write but I still write.  It is important to me to share what this life is like with BiPolar.  Not enough material is written about this devestating illness.  There is not enough mental health services for us and there is not enough understanding.  I could go back and apologize to those that I have violently pushed out of my life with my words but I won't do that.  I should of walked away at the first sign of turmoil. I had the signs and I still pushed forward.

I can't fix things after I explode and I have to live with my reactions and that should be enough to teach me a lesson.  I was talking to a friend, a real one that puts up with me, and she said that when she listens to me she sees a hamster going round and round.  Yeah, I can see that.  I make the same mistakes over and over.  Things calm down in my life and when they reve up I again make the same mistakes over and over.  Hell has no furry for those that come across my path when life feels unbearable.

One of the stories that I would like to share is my love afair with Johnathon.  I met Johnathon when I was 20 years old.  I will never forget it.  I was with a "potential" friend in a bar when I first saw him.  He walked through a cloud of smoke and he was just there standing and it was love at first site.  It wasn't a healthy relationship and I still kept going.  What hurts is that I was so messed up that I used my "potential" friend to get to him.  I didn't get to keep anyone in that group of folks.  It is difficult to write how I wasn't able to cope with a group dynamic.  During our last phone call I couldn't speak.  No words would come out of my mouth.  For years we would go on and off again becasue I couldn't communicate my needs.  He hung up and changed his phone number.  It was that day that I called a therapist and it was a start to finding out that I was BiPolar.  I have him to thank.

"The phrase “I hate you, don’t leave me” was made popular by a book on the subject of something called Borderline Personality Disorder (BPD), although those with Bipolar Disorder (BP) can also show this pattern. Essentially it is what it says… and we’ll add to more of that here. The world of someone with BPD or BP if full of conflict and trying to handle a world not necessarily perceived the same as someone without these issues.

Out of State Care

Driving 348 miles, I arrived at my destination just under 6 hours. Pulling to the curb I asked a valet attendant where the nearest parking garage was located and he most likely saw my discomfort and fear and parked the car for me.  Thinking, "well this might not be so bad." I walked into the building where I was to meet possible future caregivers of my child.

Thinking back on this experience I realize that I have a responsibility to not slam these caregivers but to also share our story.  It is a combination that can anger some and evoke responses from many.  Everybody has their story.  Our story begins the day we are born and it ends the day that we die.  Of course it all depends on what story I want to tell whether it is domestic violence, mental health difficulties or Autism and the list goes on and on. 

Today my story is the continual saga of Sam's experience with school. 

Walking onto the unit I noticed that the patients were non verbal. To many this environment would imply that the population would be low functioning, kids of all ages, who are diagnosed with Autism. I am not a fan of the two word phrase, low functioning.  I am not a fan of the two word phrase, high functioning either. I don't believe that it is a fair use of language.  But our use of this particular language continues and it will fairly describe the feelings that this environment evoked in me.  

I toured the facility and I continued to ask myself, "Why am I here?" and fully knowing the answer, "I am trying to find some people to listen to us and to hear my cry, "Can you please help me by writing some professional reports to adequately describe my child so people will listen."  My focus was to find support so the school environment would give my child an adequate education.

I had received a call from intake asking me if I was able to make the 6 hour drive and it just so happened that she called a few hours after a disturbing phone call.  The speech pathologist had called a few hours before explaining to me that she is recommending that services be stopped due to non compliance from my child.  Tears streaming down my face I volunteered to the intake coordinator that yes, I was a mess.  I meant that I was a mess at that particular hour of day.  I am not a mess all the way around, 24 hours a day. Again, it was my misuse of language.  You would think I would learn.  One more lesson that my use of language which makes it apparently clear to me if I, a non autistic adult, missuses language, that my child, diagnosed with severe expressive, receptive and pragmatic language, does indeed need the services. 

They asked me, "Can you see your son here?" and I thought, "No." It had nothing to do with the clientele.  It had to do with my conversation with the caregivers.  I know they are educated and I know they think that they are correct in their learning of how to handle scientific situations but it all comes down to this, "nobody knows how to take better care of my son than me."  No parent should feel less than or wrong for placing their child into the care of others if they feel it is the right choice for their child.  Nobody, and I mean nobody, is allowed to make me feel that I am a "less than parent."  

It all boiled down to one thing.  I knew that the emphasis would be about me.  She said one thing to me that sealed the deal.  It is this moment, when I think back, on where the red flags started waving in the hospital breeze of ambiance that made me want to run out the door.  It was the intake coordinator saying these few words, "Well you said you were a mess."  Experience has showed me that the focus would of been on me not the school.  

And of course if this had not been the case, I wouldn't of been able to provide my child with this opportunity because of the all mighty dollar.

My conclusion is easy for me to understand.  Never talk about myself and never assume that  people are out there who will stand up against an institution governed by people that are making rules where I, and my child, don't have a voice.  

It is sad and controversial.  It is also a conversation that I am willing to have with others.  I am not afraid.  My child is amazing, talented, kind and extremely intelligent.  It is my job to get him to a place of self sufficiency.  Sam and I will conquer this world together.

I leave you with this.  It is a message from a talented photographer:

Everyone communicates differently.  The main thing for Sam is communicating in alternative ways than what some people might traditionally expect.  Everyone has a purpose in this world.  Sam is here to create art and teach others with his condition that anything can be achieved.  Some of the most successful people like Einstein, Steve Jobs, Leonardo Di Caprio and John Lennon didn't even finish high school but found their way.

I couldn't of said it better myself.  And again, no parent should feel less than for making agonizing decisions on what is best for their child.  It doesn't matter what the decision is.  It just doesn't matter.

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 Was Going To Make A Facebook Post But...

I was going to make a post but I decided against it. My daughter always says that her friends are interested in Sam's page but my posts are too long.  I did a presentation last week and I was telling my daughter about how I make speeches without notes and she says yeah, you don't need notes.  I think her point is that I never run out of things to say.

So I am blogging my post because I have too much on my mind.
Today Sam worked with one his workers for an hour at a playground and it isn't respite for me.  I have to stay.  This agency has a rule that the parent must be present always.  I emphasize the word always.  I couldn't even go around the corner to the store to get a soda.  I am not going to lie.  Sitting for an hour in my car is no fun.  So I was reading this book "The Whole Brain Child" that was recommended by Sam's Music Therapist.  It was talking about how you should empathize with your child if they have had a negative experience.  It also said that you should talk about it with your child.  I wanted to throw that book out the window.  First of all that book was written for the parent who are raising neurotypical kids.   They are talking about if they were in a car accident or some one time event. What about being dragged to a 10x10 closet every day.  I do talk about the restraints and seclusions with my child.  I never want him to think that these awful things that have happened to him is his fault.  I am told by the experts that I am part of the problem because I do talk about the restraints with my child.  Duh!  He already knows about them.  Am I just supposed to just sit and do nothing because somebody else thinks it isn't a big deal or it isn't healthy for Sam.  These professionals thave the "They get over it" mentality.  No they don't get over it. The parents don't get over it either.    I didn't throw the book out the window because it is a library book and I don't have the money to pay for it. If it was my own book I would of gotten out of my car and thrown it away while spitting on it.  No offense to Sam's Music Therapist.  I probably should finish the book and have a intellectual discussion about it but I am not in the mood. 

My whole point is this...the book wasn't written for a parent who has a child with Autism.  The book wasn't written for misunderstood children who have a dual diagnosis of Autism and a Mental Health diagnosis.  The book wasn't written on what to do when the parent is seen as part of the problem.  The book doesn't have any of the answers that I am searching for.

On the way home from working with this particular worker Sam said, "Yeah, I was kinda sad."

"Sam, why were you sad?"

"I forget."

"No, you didn't forget.  You can tell me anything."

"Because sometimes I have visions of people hurting me.  Like in my old school where the guy threw me and I almost hit the wall. I can't sleep at night.  I don't like going to sleep at night."

As Sam's parent I am not backing down and telling this new school that they can lay their hands on him.  Once they lay their hands on Sam, Sam is going to go into fight or flight.   

I feel sick.

So I keep doing what I am doing.  I am teaching Sam photography and we are starting really cool projects to show the world that Sam CAN.  To heck with the educational system.  If I get him to a place where he is safe and happy, we can do the fun stuff after school.  

People ask me, "So what makes you happy?"  It is simple what makes me happy.  Ask Sam to take your photo.  Tell Sam, "Wow, your photography is awesome."  It also makes me happy when someone asks me to donate one of Sam's prints.  This is where I do get a little snobish, or maybe not (not really sure).  I like it when people specifically ask for a print for their specific cause.  I am so unbelievably busy that I like it even more when they remind me when I have forgotten to get them the print.  I had one of my favorite ladies from our YMCA call me twice for the print.  I don't need a thank you.  I just want to know that you really want the print.  I had one experiences where I have donated and the woman didn't even look like she cared.  I never want to feel that way again.  It felt lonely.  I work too hard to feel lonely. 

As a side note, there are two organizations that never have to ask for a donation because they have become a part of who I am.  They know who they are.  

It also makes me happy when I get to hang out with Sam.  I don't care if he has the camera in his hands. He is a really cool kid.

So tonight I was thinking about my post and how I should have my tag line be "Thanks for sharing and caring" but that is corny.  I do appreciate Sam's fans sharing his facebook page.  I also appreciate their generosity and their well wishes to communicate to us how much they care about my son.  I am a fortunate Mom.  

Now all I have to do is to keep him safe and happy from 8am-2pm weekdays.

Definition of Mental

1. a: of, relating to, or being intellectual as contrasted with overt physical activity.

2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.

b: mentally disordered, mad, crazy.

I choose being an intellectual as my definition of being mental.

*The photo that I use for my background was taken by Sam.  You can find more of Sam's work at https://www.facebook.com/SnapshotsBySamMaloney

"He Has To Fail To Get Help"

This is a video of my son Sam's photography

I really don't know what to title this blog but it doesn't really matter.  Right now the only thing I know is that Sam has to fail to get help.

Let me back up.  During the 11/12 school year he was restrained and put in a 10x10 closet with someone probably putting their foot at the bottom of the door while he was trying to get out of his prison cell.  The Behavior Plan was written up so that he was secluded in a larger room with the guy who restrained him for the rest of the day.  I went into the school and said, "No, you can't do that."  Lucky for me we had a behavior specialist who listened and tried to do the best that she could. They fired her at the end of the school year.  Probably because she wanted to help the parents.

During the 12/13 school year Sam was restrained and put in that 10x10 closet until he wanted to harm himself.  I am not joking when I say that I had visions of him taking off his shoelaces and hanging himself on the door.  It has happened in this country more than once.  I had Sam on suicide watch for months and he still can't sleep in his own room.  I can stand on the mountain tops and scream that prisoners are treated better than our children and nobody will hear me.  We had three formal investigations of abuse and nothing happened.  I have a lawyer and she can't help.  I have advocates that I have completely given up on.  I have therapists that I am shutting the door on.  I am finished.  I am fed up.  (This does not include the Music and Art Therapists.  These are the people, and the only ones I have met this far that get it)

So what got me all in a tizzy?  It was my conversation with the social worker from our Autism Unit.  Again, having to back up.  The leading researcher in our area is very connected in the country.  She also knows her stuff.  I met her at a Autism Speaks Walkathon Kickoff Dinner where Sam spoke about his photography and Autism.  He was eleven years old at the time and I wrote him this speech that he read in front of everybody.  The speech read, "I am Sam.  My Mom tells me I have Autism.  My Mom tells me that Autism is not who I am.  I am Sam.  I am a good person and I love to fish."  He was so sticking cute when he read that speech.  At the end of this speech, the doctor came up to Sam and asked if he had any pictures of fish.  The doctor is petite and almost saw Sam eye to eye.  I had never heard anyone talk to Sam the way she did that day.  I framed two of his fish photos took it to the Autism Unit and gave them to her.  They are hanging in her office.

This wonderful doctor had contacted me and asked if they could buy some of Sam's prints to put in their newly decorated hallway in the hospital.  I was thrilled.  I saw her at an Autism Treatment Conference and she asked me how things were going and I just sat and cried.  She told me to make an appointment and I did.

On the day of the appointment a few weeks back I didn't take Sam and just made it a consult visit.  I thought she was going to set Sam up with behavioral specialists who would come into the school but that isn't what she suggested.   She said she wanted to make a referral for inpatient and the Kennedy Krieger Institute in Baltimore ,Maryland.  I trust this woman completely and her and her social worker are the only two people I can trust.  They are going to tell me how it is and I appreciate that.  If I say but what about?  They will say it won't happen because.  The because is because the system is set up all wrong for our kids.

The doctor explained that our dual diagnosed kids are the ones that fall through the cracks.  I have already figured this out.  She says that in the Autism world the professionals talk too little (Picture Schedules and what not) and in the mental health world they talk too much.  I have figured this out because when I go in there and make suggestions on how to combine the two they just look at me like I am from Mars.

I thought that the Kennedy Krieger Institute would be the answer to our prayers.  It isn't.  They would of taken him off his meds and start over.  It is one of the leading institutes in this wonderful nation of ours that harm our kids and I felt like my prayers had been answered. 

Today I found out that Sam has to fail at the next placement.  New York State medicaid will not pay for an out of state placement unless we have exhausted the most restrictive environment in NY State.  I also found out that I have to watch him fail.  So if history repeats itself and they restrain him and put him in seclusion and he wants to harm himself, I have to pick him up at the hospital after they do a mental hygiene arrest.  I don't know how many times I have to watch this happen but all I can do is sit back and watch things fall apart.  If I want him to go to Kennedy Krieger I have to watch him fail.

Believe you me, I will be in their face if they hurt my child.  There will be no prone restraints and they will call me and email by the end of the day.  If Sam starts crying every night that he doesn't want to go to school and history repeats himself where he says that he wants to harm himself, I told the Autism Unit that I will be on the phone with them.  After things fall apart the Autism Unit will step in and get him into Kennedy Krieger.

My job right now is to smile and tell Sam how wonderful the school will be even though a child was sent to Urgent Care after being put in a choke hold.  I talked about it at the meeting and they said, "Well, that was in the group home."  They are trained by the same people!  I was trained in restraints and seclusions when I worked there and they are all trained in one room.  The point that it was in the group home is mute and I tried to call him on it.  The school representative at the meeting just looked away.

The only thing I am concentrating on is Sam's photography.  I don't have any more money to send him to Hochstein for Music and Art Therapy.  I am tapped out.  Sam will be in day treatment and they will take over everything so all the outside services who prescribed his meds will be gone.  I will be a the mercy of these people.  There is also a chance that Sam will be successful.  Only time will tell.

All I can do is smile and send Sam on a bus and tell him to have a nice day.

I am petrified.

Definition of Mental

1. a: of, relating to, or being intellectual as contrasted with overt physical activity.

2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.

b: mentally disordered, mad, crazy.

I choose being an intellectual as my definition of being mental.

*The photo that I use for my background was taken by Sam.  You can find more of Sam's work at https://www.facebook.com/SnapshotsBySamMaloney

My Heart Hurts

When something happens to one of our Autism kids we talk about it.  We all talk about and it doesn't matter where on this globe called Earth we live.  Autism is a global issue, it is also a Rochester, NY issue and it is where I currently live.

Thanks to Social Media all of this despairing information is available to all of us to share.  The latest news was an injury sustained by a child while in a Group Home at our own Hillside Family of Agencies.  I say the name out loud because the news is already out and the Group Home wasn't named but Hillside was so I am not ashamed to vocally say what agency it was.  I am not ashamed because the school district wants to send my son to a school run by Hillside.

What happened to this child happens to children every day in our country.  I won't go in a play by play but basically he was put in a choke hold and sustained substantial bruising.  What makes this so very difficult for me is that I worked for Hillside.  I worked on their Peaceful Community Initiative to lower the number of restraints in their vast land of services.  I was also trained at Hillside which included training to place children in restraints and seclusion rooms.  I feel sick on how slow the restraints are made with non disregulated people.  They try to have the person come at you full force but face it, there are no real life scenarios happening.  People would look at me with fear in their eyes saying, "I don't want to do this."  They practiced the restraints anyway.  They needed a job, they needed the money.  I sat thinking on how much improvement is needed in the training.  That was the reason why I was there.  My job was to tell Hillside what I thought of the training.  My words didn't mean anything.  I was probably too controversial.  I have to live by my standards and I have to keep it real.  That training sucked.

It is called Hillside Family of Agencies.  Family of Agencies?   Family to who?  Think about it....Family...of...Agencies.  It is a group of people who work for Hillside and it is their family of workers that they are talking about.  I don't know if I need to apologize but this is how I feel about it.  I have been involved with schools for the past 7 years that don't want anything to do with me or my family.  It is what they believe, what they think Sam needs and it is their policies that they abide by.  It is their rules that they stand up for.

Am I angry?  I am so angry I can hardly function.  My mind is stuck on how to help Sam.  It angers me that my advocate from the leading advocacy agency told me that the placement wasn't appropriate.  It was this same advocate that said in the school meeting "Hillside, I have never visited Hillside.  I would love to visit Hillside."   What?  Are you kidding me?  She told me no to Hillside.  She said to me, "That is not an appropriate placement.  You ask them what the definition of insanity is and then you wait for their reply.  You get the power back in your corner."  I can't find the words to express how that feels.  I felt duped.  I am powerless.  Or am I?  That is one thing that I haven't figured out yet.

What is the definition of insanity.  We all know what it is.  It is doing the same thing over and over again without different results.  My son needs a multi-sensory approach to education.  It says so in his IEP.  It was the school district that sat me down and said that they can't force any placement to do what my son needs. Why not?  IT IS IN HIS IEP!  It is also written that they can restrain him and put him in a seclusion room for 20 minutes.  I know that they won't follow the need for a multi sensory approach but they will follow the IEP to restrain him.  Restraining him is a far more easy approach than providing the appropriate approach to his educational needs.  Nobody can tell me otherwise.  I have had too much experience with school personnel that think they are above me.  No, I am in charge.  I make the decisions for Sam.

This is the end all of end alls, I work for my son.  I don't work for Hillside.  People say that you have to be accommodating and disgustingly nice in these meetings.  I don't have to be nice when I write.  I don't have to say that I have to conform to fit their standards.  I don't have to and I won't.  This is my son that I am fighting for.  I am controversial and I keep it real.  I want my son safe.  I don't want to place him in an institution that is known for not involving the parents.  It is a known fact.  It said so in the article.  This particular institution would not comment on the apparent abuse of this child.  I am not surprised.

I have to face facts, I am running on fear.  I am also doing this alone.  I am scared out of my mind.  They don't have a placement for Sam.  Hillside is for families that don't have any alternatives.  It is with a heavy heart that they place kids in their care and non of them do it lightly.   We have a place for Sam.  He is wait listed.  We will wait.

Definition of Mental

1. a: of, relating to, or being intellectual as contrasted with overt physical activity.

2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.

b: mentally disordered, mad, crazy.

I choose being an intellectual as my definition of being mental.

*The photo that I use for my background was taken by Sam.  You can find more of Sam's work at https://www.facebook.com/SnapshotsBySamMaloney

What are they thinking?

I really hope this post makes sense.  I welcome anyone to add comments because maybe I am missing something.  Currently I am dumbfounded on why the Director of Special Education would hand me an educational article that apparently is "ground breaking".  For me, there is nothing groundbreaking about the research that she handed me.

I have been doing anything possible to help Sam feel comfortable in any educational setting.  I also have been working overtime to educate anyone, in multiple schools he has attended, about how he learns and what is needed for Sam to believe in himself to become educationally successful.  My degree is in Education and I was certified K-12 in Biology and Earth Science.  I was trained to be an Elementary School Teacher.  I taught in Seattle, Washington and I was trained in restraints and I have experienced what it is like to restrain a child and sit with them in a Time Out room that was no bigger than a closet.  It is crazy when I think about it.  I believe that my higher power was training me for the life that Sam and I are living now. Something pushes me all the time to share our experiences.

I quit teaching for two reasons.  Okay, maybe three reasons.  First, the teachers that I met didn't really have nice things to say about kids in the lounge.  I finally had to each lunch in my room and I was thought of as an outcast.  It was just another arena where I did not fit in.  Second, a kid pulled a knife on me and I was two months pregnant with Mina.  Third, and most important, I believed in alternative education for kids to feel success, therefore, they want to learn more.  The administration didn't believe in alterntive ways of learning.  I say the third is most important because I didn't feel that the child with the knife would hurt me.  It was however, the last day I taught in any classroom.

The article was titled "Mind-Sets and Equitable Education".  The first paragraph says, "Much talk about equity in education is about bricks and mortar-about having equal facilities and equal resources."  The definition of Equitable is 1: having or exhibiting equity: dealing fairly and equally with all concerned.  Most people know what equitable means but when it comes to our kids in special education  fair doesn't mean equal.  There is an IEP to be individualized to the child's needs.

I am reading the article and it talks about that a teacher and/or student can believe that the students IQ is fixed meaning "They may have a fixed mind set"  I just sit in disbelief that it is ground breaking information that it is difficult to "capture the beliefs that administrators, teachers, and students hold-beliefs that can have a striking impact on student's achievement."  What?  Really?  You don't say.  Geez, I sat at that school and I knew what their beliefs were about Sam.  They believed that he was mentally unstable and he perceived things.  They also didn't know what the triggers were. I know that they didn't believe in Sam, they didn't do their homework and they were lazy.  That is a little harsh but that is my belief in their ability to understand and to educate my son.  I have heard educators say, "What does the parent expect, the child is mentally retarded, this is as good as it gets."

It keeps rolling around in my head on how the Special Ed Director was all smiles handing me this article saying, "I want you to read this."  For what reason?  I am not the one that believes that my child's IQ is fixed.  Nothing in life is fixed.  Nothing.  It further says, "Recent research has shown that students' mind-sets have a direct influence on their grades and that teaching students to have a growth mind-set raises their grades and achievement test scores significantly."  It continues to say, "In addition, studies demonstrate that having a growth mind-set is especially important for students who are laboring under a negative stereotype about their abilities." 

I know that anyone reading Sam's reports will have a "fixed mind-set" that Sam "can't" instead of thinking that he can grow and learn in a caring environment.  Sam's reports say that he is cognitively disabled and mispercieves his environment and all of this negative crap which will make it difficult to see Sam's potential.  How can you not have a "fixed mind-set" that he can't learn.  It says so in all of the reports.  I am working overtime trying to change wording so educators will have some belief in Sam's abilities to learn.

I further read and everything that they researched is common sense?  Or is it?  When a college student is learning about how to teach students it would be my hope that they are learning that you don't stereotype kids.  I think of  my experience of alternative teaching and it brings me to today's educational world where the blame is placed on New York State Curriculum that makes it impossible to instill in a child that they can learn.  For me it is all ridiculous.  Give Sam a safe place to learn and fill his day with people who believe in him.

While reading I sit in amazement that it is new knowledge that when students were praised for their effort their performance continued to rise.  I can say that one of the points the writer was making that it is beneficial to praise for effort instead of praising intelligence.  On the flip side it would be destructive to communicate to a child that they were not smart.  During my student teaching when I made an alternative learning curriculum for a specific child, the teacher looked at me and said, "Why bother, he is mentally retarded."  True story.  I made the lesson for him and he completed the entire task.  Today I listen to Sam telling me that he is not intelligent enough to be successful.  We have intelligent discussions about it.  Maybe the Director of Special Education wanted to make it my responsible to change Sam's "mind-set."  No it isn't.  The education team has to meet me and Sam half way.

In conclusion, it was one of the most ridiculous studies I have read. It is common sense to see human potential in all who enter any educational setting.  This is what I do with Sam's photography.  I send the message to him that he can learn.  I agree that I do say he is smart but I also tell him that he can do it when things get difficult. I also don't back down and I give the encouragement needed to finish the task at hand.  As a result, Sam's enjoys his success after the task at hand is completed.  This is not new information to be celebrated.  I will definitely bring this article to my next CSE meeting and ask them, "What is your "fixed mind-set" about my child.?  I am sure that they will all say that there is room for growth.  My response will be this, "Put it in all his reports.  Rewrite the reports so a stranger reading it will believe in Sam's potential.  Put it into their minds that there is potential for significant growth."

Definition of Mental

1. a: of, relating to, or being intellectual as contrasted with overt physical activity.

2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.

b: mentally disordered, mad, crazy.

I choose being an intellectual as my definition of being mental.

*The photo that I use for my background was taken by Sam.  You can find more of Sam's work at https://www.facebook.com/SnapshotsBySamMaloney

It Isn't Rocket Science

It is 10:00 on a Friday night and I am writing.  That fact alone tells the story of my social life.  It is non-existent.  I met up with an old friend the other day and we hung out at a coffee shop and went to a movie.  It was of the opposite sex and we had plans to meet later in the week.  He called me and I said, "Hey look, I am so sorry but the school meeting didn't go well.  I can't drag you into this mess and you don't deserve to hang out with someone who is not happy."  He said, "Thanks" and that was that.

The Committee on Special Education meeting did not go well this week.  I have to laugh because I later sat and I cried and put all my thoughts on facebook which is really the social thing to do (I say kiddingly).  There is something I must clear up.  How I talk on facebook is not how I talk in meetings.  My social expression is my thoughts on how I really feel.  I act accordingly in  meetings with the laughter and the kidding around and all the stuff that makes me literally physically ill when it is finished.

My district is a very large district and there is no possible way that they can know each kid individually or can they?  Isn't that what the Committee on Special  Education is all about?  Isn't it a group effort to oversee a program that works?  I get that it is all about money.  I also get that it is about the big wig who is breathing down the Chair's neck.  I have visions of our Chair sitting in a meeting with their stats on who is placed and who isn't with the side remark, "So how is it going with Mr. Sam Maloney?" With the response, "We have a very involved parent who is making it difficult to place him."  I don't really know but I can say that the Chair looks really stressed in our meetings and I always tell him that they couldn't pay me a million dollars to do his job.

My thoughts drift to rocket science.  I was curious to know of the origin of the expression, "Well, it isn't rocket science" and this is what I found. It is an idiom that means. "This isn't all that advanced or hard to understand."  I also found this, "Rocket technology is thousands of years old.  It is Sulfur, saltpeter, and charcoal powder in a tube, which you light and retire.  A few tests and a little trigonometry will tell you where it will land.  A little calculus and some data on thrust and combustion rates and you can work out the acceleration and the trajectory and everything."

I am wondering if anyone knows where I am going with this?  It makes me chuckle because what I want to scream at these meetings is, "You have all of these tests.  You have all of this information and you still don't understand my child!"  I want to yell at the top of my lungs, "This isn't rocket science!"  Or is it?

Us parents know that our children with Autism come from a different operating system.  All the neurotypical workers out there, except for the ones with children diagnosed with Autism, don't live this life.  How many times have they been trained to watch the videos and read the books that are so thoughtfully produced by so many talented individuals who live this life as a Mac and not a PC.  How can you understand something if you don't live it?  How do these people come up with any answers to the questions of "What will work for this child."  More importantly, "What have we tried again and again that isn't working."  It isn't rocket science to know that if it doesn't work come up with a better equation for better outcomes.

Rocket technology is trigonometry and calculus.  I don't understand math but I do understand the concept of calculations.  You feed in the information to get the answer.  Isn't that what Behavior Specialists do?  What I got was a piece of paper slid across the table telling me how many behaviors he had.  I looked at the piece of paper and said, "What day, time and subjects did these behavior occur?  I was met with, "We don't know."  "You don't know!" is screaming in my head.  The next meeting they slid me the same sheet of paper with the same kind of skeleton information and I slid it back saying, "This is meaningless."  I also told them I was pulling Sam because of the abuse that he had endured while he was in their care.  Yes, I can be a little you know what.  And yes, I did enjoy the look of shock that clearly showed on their faces.

Rocket Technology is also about "a few tests with these calculations to tell you where the rocket will land."  All of these tests that we give our kids are given so we can get them to land on their feet when they are 21 to lead productive lives.  The tests can include IQ, Auditory processing, Sensory Integration Evaluations, to name a few.  Sam's tests were ignored and now they are outdated.  They were not looked at and Sam is floating out in space at the moment with no place to land.

So in conclusion, I guess figuring out our kids, for the professionals is rocket science.  I guess calculating our kids needs is an arcane science which by definition is, "an adjective known or understood by very few; mysterious; secret; obscure; esoteric.  This is a shame.  Maybe the professionals should listen more to us parents.  To us, figuring out our kids is not, for the purpose of this discussion, rocket science.

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.