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