Friday, April 26, 2013

the crashing mirror

Nash has one of those mirrors on the back of his door.  It's always been there.  When he was little he loved to look in it...but's useless.

Since he has become violent in his rages....he hits things...he likes to hit me and his door.  When he hits the door...we take off the door.  The door has taken a lot of abuse.  Me too...but we are talking about the door  :)

Hubby and I have talked about removing the mirror...but have not done it.

Last night at 11pm....CRASH!

I am not sure of the sound...but I heard Nash screaming in panic from his room.  I run in...of course I am groggy because I took a major sleeping pill before bed....but run the best I can.  Try to open the door...and it won't open more than about 6 inches.  I keep trying to open the door.  Nash is screaming for help.  I can not figure out why the door won't open.  I yell at Nash to come to the door and help me open it.  He is in a panic and afraid of the dark.  I am panicking because...I can't get my son!

I reach around the door to feel...why?  Nothing!  I push more.  Nothing!  Then I feel the back of the mirror. I hit the ground.  I find the mirror.  It is wedged between the door and the dresser.  I call out for Hubby....but as always...Hubby is asleep!  I ask...beg Nash to please help me.  Finally what feels like hours of CHAOS....I manage to get the mirror...rig it so that the more I lift.....the more I can open the door.

Finally I am in!

Nash is in full panic, covered in sweat....mode!  He is crying...I am now crying because I was days!  DAYS!  OK...I exaggerate....but you were NOT there!

So, I finally get my son out...I get the mirror and cus it out!  Tell Nash to now hit the mirror for being so bad.  And folks...this was the end of our sleep!

Nash was in full panic all night.    Was the mirror going to make the sound again....No!  Can we snuggle....of course honey.  Mommy's never need sleep.  We worried and talked about the situation...all night.  Finally at 4am...I convinced him to go to bed because I am exhausted and I have to go to work.  So, he sits in his room...asking me from far away...if the noise will happen again.

Did I sleep???  Nope.

I struggle thru work today.  

Then at 3:30, I get a call from Sophie...she would like to go out with friends.  And Mom, can you chauffeur everyone?  To the play, and then pick us up at 10pm and drive us home?  And can I have a sleep over with my best friend?  

I finally get home from chauffeur duties when Nash is awake a panic!  So, we talk...I rub his feet...and I am now...hopelessly awake!  WTF?  I get him back to bed.  

And even tho I told Hubby...he was doing Nash tonight...even when we were snuggling and talking in MY BED.  Hubby was snoring and would reach over...and pat a dog.  

I am tired...very tired!  And I know...tonight is not a night to sleep.


Mom is changing titles

For years I have been on my school's PTO board in some fashion....director, secretary Co-President...then President. And now....I am stepping down.  As you know...I have been saying I would leave...but never really felt it.

Then when I felt it...I wasn't sure I could leave.

I have wanted to be a PTA President since I was a little girl.  My Granny was a PTA President...she always talked so highly of her work as a President of PTA...she made the position sparkle.  And it did!

I cried when I saw that it was time for me to go.  Wasn't sure I could leave....could I hold on one more year?  NO.  It's always good to leave on a high note and that is where I am.  But, it was hard.

Then I thought...I am just going to do nothing!  Take 6 months off and see what is out there that needs me.  Because...I am very good at what I do.  Anyone that knew me...knew this was HARD for me  :)

Not volunteering is like NOT doing drugs!

But, I had a new world to enter.  Special Education, Autism....a world I know nothing about.

So, I started asking questions because certainly.....they have to have some kinda place where people meet up, have a meeting???  Come on!  So, I asked anyone and everyone.  And the more I asked the more people already knew who I was.  I found out about SELPA....Special Education Local Plan Area, and they have a community advisory board.  And they asked me to be on their board!

I am very excited about this change.  And they are excited to get someone who is as connected as I am and vocal about what I do.

This is where I need to be.  Fighting for my son and while fighting for him...fight for others than need a fighter

I am so happy that I can what I do...and along the way...benefit my son!

Wednesday, April 24, 2013

Homework....why now???

Homework has never been a problem for my kids.

Sophie used to ask for extra homework.  And Nash loved to do homework in kindergarten when it was not needed!

But now....I fight the homework Monster.  I never got it when friends talked about having trouble doing homework.  Today....I hate homework! has brought me to tears and I am hiding in my bedroom.  And it's not even 4 o'clock...homework time.  But, the crap before it has to be done...from!

Monday, April 22, 2013

M&M' this is not too hard!

For the last week and a half...every one and their dog it is doing testing and assessment for Nash in preparation for his upcoming IEP appointment on May 2nd.

Every day I can tell his routine has been severely messed with because he comes a bear looking for a fight.  And with who????  me! 

Today was another nightmare.  If I said black...he said white.

When he had gone thru all of his minutes of Big Bang Theory and every other reward.  I sat down on the bed and talked to him.  He was REALLY MAD!

He is tired of being pulled out of class all the time!  He says he doesn't mind when he has to go to the bathroom or to see Ms. Flowerdew.  But, he HATES seeing Miss Susie, the speech therapist.  She only gives him stupid toys from her magic chest for good work and she is in he scary part of the school...with the 5th graders.  Nash asks...why doesn't she give him M&M's???

And I ask myself...why DOESN'T she give him M&M's, I bought everyone that interacts with my son...M&M's for the testing & assessment period.  WTF?

I ask Nash...would you like Miss Susie to give you M&M's or just stop pulling you out of class.  He said ...out., I wrote a formal letter to everyone in the school to have them stop the testing and make the assessment on the information that has been gathered and that's it.

Then while talking...Nash asks...why?  Why are they doing all of this stuff to him?  Why?

So, here it is.  I explain that Mommy had to go thru tests when I was younger because my brain worked differently just like his.  And we have brains that people have to test to see how we learn.  He asked if Daddy asked for these tests too?  And I said no..this way he can have one parent who is not doing this stuff to him.

He said he is tired of being pulled out and being different.  I told him he is not different...he just has a brain that works differently...better.

Man...I bawled for a long time with that one.  This sucks!


Saturday, April 20, 2013

baseball Saturday

Our day started early...Nash...never a sleeper is always up early.  But Saturday!

So, in our world it is....
  • Nash walks with Dad to McDonald's and they have breakfast together
  • Mom tries to sleep more
  • grocery shopping with Nash
  • because even tho grocery shopping is hard with him, its our routine
    • we go 8am so we get there before the real crazy people shop up
  • then Sophie and I go to a Children's Fair to get any info on our community that I might not know
  • Go to Nash's baseball game
    • it was a long game!
    • No matter how much you think he is in it...he is not
  • then rush home, drop off kids
  • meet with our behavior therapist for more lessons in how to deal with our new world
  • home to study the lessons we have been given
  • make dinner
  • work on 3, 2, 1 ....done for behavior management
    • we now have to carry poker chips with us all the time for rewards
    • working on having more control in our house
    • Nash is the one controlling it all right now
    • practice and make fun....3, 2, 1 ....done
    • chips all around!
  • Nash lost 5 minutes of Big Bang Theory and 5 minutes earlier to bed because he was controlling the door being NOT opened
  • I give up with dental hygiene tonight because really...I am NOT dying on this mountain
  • get Nash in everything the same way
  • say good night,  I love you...muuhhhaa
  • close the door and walk to MY bed and lay down for a few minutes
  • thank God for another day that we made it
    • and I love my son!
  • Sit with Hubby to have a conversation because this is the only time we can talk without being monitored by Nash
  • agree and get on the same page with each other
  • watch TV and eat ice cream until Hubby falls asleep
Our life has always been controlled by Nash....but we just looked at it as making our life easier.  And now that he is getting worse....we are really being controlled so much so that I feel like I am chocking most of the time.

Our behavior therapist says we will soon get control of our lives and home.  I am hopeful but not optimistic.

I was told to download and read....
First 100 Days Kit
© 2008 Autism Speaks Inc. Autism Speaks and Autism Speaks It's Time To Listen & Design are trademarks owned by Autism Speaks
Inc. All rights reserved.
A tool kit to assist families in getting the
critical information they need in the first 100
days after an autism diagnosis.

It is a couple of hundred pages.  I got it all printed out and 3 hole punched and put in a binder.  Because as much as I refer my Hubby things to read.  I have learned he will only read things that come in book form....he does not like to read anything on the Kindle or the computer.

If you are interested in or have a diagnosis of Autism in your family...go to Autism Speaks

I am reading as fast as I can...because I am already at 51 days and just starting!

Stay tuned!


Friday, April 19, 2013


This morning I woke up and thought...thanks GOD it's Friday.  Then I remembered, Hubby is subbing at school in the after school program and I work until 5.  And little whack-a-mole....believes that if he is not picked up at 3pm is over.

So, for an hour....its the whining, the why's, the flat out....I am leaving and running away.

I explain that he will be with Daddy at after school program...just until 5.  There is nothing we can do...this is life. 

Why does a change in schedule have to be changing for my boy????  Now, I am not a fly by the seat of my pants gal.  No way!  I hate change!  But, I know that this is life.

Geeze...I am thinking....every morning this HELL!  I can NOT do this again!  Then my brain works.

I tell him...that I am going to call all of my friends and see if someone can pick him up at school at 3pm.  And if they can...they will show up and walk up to him and say....snickerdoodle!  I tell Nash this is our code word.  But, if no one shows up at school and says to him...snickerdoodle...then he will have to stay at school with dad.  He is very skeptical.

And with good reason.  Even if I did call someone...he would NEVER go with anyone!  He is too paranoid and has never, ever been in a vehicle with anyone else but us and Deb.

But, as soon as he would start to whine...I would say..."what is the code word?"  He would joyfully smile and say...snickerdoodle!  I am thinking....I rock!

Until it was time to go to school...I had tested him several times.  He was ready!  And just in case I was wrong.......I tested him and asked him if he could tell them the password???  He knew that he couldn't.

So, we are at school...and I test him again.  I got this!

Then he tells his teacher.  I lean into her and tell one is picking up Nash.  He is going to after school program.  But, he was having a bad day and needed a little hope.

I was telling my boss what I did...and she asked who was picking Nash up?  And I said nobody!  Then I felt bad...thinking Nash was upset.

But, get home...and first thing out of his"mom, no one said "snickerdoodles"!"  I said too bad...maybe next time someone will.  He was happy.  I was happy!

Some days...I got it!

Stay tuned!

Thursday, April 18, 2013

the world ended over a jacket!

This is NOT a good week.  Every night is a major meltdown with Nash because of being pulled out of class too much.

I am at my wits end...swear!

This morning....things seemed to be OK until Nash asked where his jacket was.  Not thinking it was a big deal...I said oh, it's in the wash.  I will move it to the dryer and it will be ready when its time to go to school.

He pulled his jacket out of the dryer claiming that it would get ruined in the dryer.  His clothes can't dry.  Oh my...was there drama.  So much so that I had to change clothes a couple of times.  Violence and spitting and hitting.

I have had to call for help 3 times was a call. My behavior therapist.....I say mine because well...she is supposed to be training Hubby and I in how to deal with Nash.  But, this week...we are thinking she is going to have to be introduced to Nash.

Anyway...there was hitting, kicking, spitting, name calling....and this was all towards me. 

It was cold outside and I didn't want him wearing a wet jacket.

But, I got to the point where I just wanted it to end!  I wanted it over.  Get OUT!  GO TO SCHOOL!  WEAR THE FUCKING WET JACKET.

So, we left the house 20 minutes a wet jacket.  Because usually, the ride seems to calm him down. 

Yes, he was calming down...but still telling me how much he hates me.  Mom, I don't like you...please move away.  Mom, I hate you.  Mom, never talk to me again...I hate you.  I am on my own...I don't want you around.

We got to school...he says very loudly...I don't like you Mom go away.  I say, then fine....get yourself to gone.  You are on your own buddy!  Then I get have to walk me to class.  But, I won't hold your hand...I don't like you.

I get him on the campus...he runs off with his buddy's and I am in tears.

I know it's not personal...this is the business of autism. hurts.

I am sad.  I am scared.  I never dreamed this would be my life.  And I am.

Stay tuned!


Wednesday, April 17, 2013

and now....a little more

This has been a very rough week for Nash, our son.

On February 27, 2013....I figured out the game the school has to play with parents about how to get your child services.  I really thought...they would be open and forth right about what is available and could help me figure out just what the HELL is going on with my son.

No, that is not their job.  Not that they are being mean or specifically targeting me and my child...nope, this is the way the game is played.  I had asked for help in the beginning of the year and was given an SST meeting.  So, not even close to help.  Just a hand pat.  Then was told if you get a diagnosis....maybe we can help you.

I was jumping do you get a diagnosis???  I am not familiar with these terms nor am I aware of what I need.  Help me please.

Then I spoke to just the right person who informed me that all I have to do is ask in the right way.  Use the correct names on my request and ...wallah...I get an IEP.

So we are scheduled for an IEP on May 2nd.  I am scared and nervous.  I got a call last night from the speech therapist.  She was calling because she was afraid she was not going to be able to be able to get me her report 1 week in advance of our meeting.  She has never had parents ask for the records 1 week ahead of time so that I could be prepared!  Wow....I wrote a damned good letter!

I have school psychologists, speech therapist, special ed teachers and others jumping!  And is my son cooperative???  NO way!  He is an anxiety mess!

And now...for the past 3 days...we have had major melt downs daily!  MAJOR MELT DOWNS!  And now I get it....he is being pulled out of class daily by people he does NOT know, to do things he hates and all while he is figuring out...that he is different. poor little man.

This afternoon...anything that could go wrong at home...did.  It got so bad that Hubby had to walk out and cool off while I got stuck with the beast that is TOTALLY pissed off because we want him to do his homework....and both of us are sitting at the table to help.  We didn't figure it out until, how stupid are we?!?!?!  We totally overwhelmed the little guy.

In the midst of the chaos...I got hit several times, had to hold him down for a period of time....all while cooking dinner.  Because damn...I am good like that!  And more than this....I got him off his cliff of doom and managed him to sit and eat dinner at the table...with the rest of us!  OK...where is my high five for this????

This really is going to be a one day at a time thing...maybe even 1 minute at a time thing.

Stay tuned....


Tuesday, April 16, 2013

Introduction to Mom and Wife

I started a new blog. 

Why?  Well, the other blog was not safe.  It had been attacked by a person that does not make my life a safe place.

I have missed writing in my blog.  Especially now...because now is when I need to write more than anything else in the world.

Life is stressful now.  Life has changed...drastically!

I went from a stay at home Mom with little part-time business, President of the PTO of my kids school with a 1st grade boy who was a little odd and and a Sophomore girl who is brilliant but a little odd too....and a husband that worked way more than full-time in the state corrections the complete opposite!

  1. I closed my business and went to work in a property management company, as a part timer.
  2. I am retiring as President of the PTO and hanging up my hat after 6 years of diligent service.
  3. I even closed down all of my little side home based selling jewelry, personal safety and nail shields.
  4. On October 22nd, rained.  And my odd little boy...drastically changed from a docile, odd duck with clinging to Mommy issues to a scared, violent...obviously something is wrong with this kid....kid.
  5. Daughter is leaving high school to attend college in a Middle College program.
  6. husband retired!
Life is certainly different now.

My son has been diagnosed with PDD-NOS and ADHD.  So, a really hyper high-functioning autistic that is now on medications to function.  He is now functioning better.  And now I see....that I never saw that he was different.  He was just my son...but the day that it rained......I saw that he was different.

When I say this to people...I am looked at as weird.  How can a child change because it rained?  I don't really know HOW it happened...but it did!  Maybe it was me that changed...maybe I finally saw the real boy....the part of him that is different.

So, this is going to be my new blog.  The Days and Nights of a very busy Mom is no longer a relevant sight nor is it safe.  So, please follow me and my new blog.  See how I cope with autism, a 15 year old daughter in college, a retired husband...and employee and no longer a President with power.

Stay tuned!