Wednesday, September 18, 2013

tomorrow is the IEP

  • My last attempt at an IEP....looking back...was a flop.
  • It was a flop for me and for my son.
  • I did not have a grasp of what I needed or what my son needed
  • I brought lots of people in but they had about as much information as I did
  • I am nervous
  • Nash is in 2nd grade now he needs more
  • I need him to want more
  • I want more
  • I have my list of things to ask for
  • I am more prepared
  • I have a viable diagnosis this time
  • Someone saw what I finally saw last year
  • And...they saw more than I even thought was there
  • I got very scared
  • I had huge doubt that I was the parent for this child
  • I am still scared
  • I never thought I was good enough for a child with special needs
  • Those parents always seem like they were breed to take on a child with special needs
  • My therapist said I was the perfect parent for a child with special needs
  • I thought she was crazy!
  • I remember going to the hospital almost 18 years ago knowing there was something wrong with my baby that I was pregnant with.
  • I was being rushed from Santa Maria hospital to a level 3 hospital in Santa Barbara
  • I was with my husband, my Mom and my mother-in-law...and we were being rushed 
  • I could feel it was bad
  • I prayed that if my son was going to need anything or be special needs...that I was not a good enough person to have him
  • I prayed that he not survive
  • What a double edge sword that was
  • He died
  • I felt the most guilt....ever
  • I live with that guilt all the time
  • And when Nash came along
  • I expected perfect
  • I knew that something was off all along
  • I never thought it would be this
  • More guilt
  • I asked everyone
  • doctors
  • daycare
  • other parents
  • then
  • teachers
  • school staff
  • and then
  • one day
  • October 22, 2012
  • it rained
  • and something was revealed
  • It took all this time
  • to see what Nash was
  • he is perfect for me
  • Nash is my odd little duck
  • There are days that I swear I am going to pull my hair out because he frustrates me so
  • I listen to him repeat a million things......over and over
  • I listen to him tell me about a movie...that he has seen once
  • and has it memorized
  • He can recited the names of the players in all of the episodes of this seasons Wipeout
  • every single one!
  • He talks to me in movie-speak and I smile because I know exactly what movie it came from
  • I know he only eats chicken nuggets from McDonald's and Foster Farms
  • and I know he will only eat KRAFT Macaroni & cheese, made the regular way not instant!
  • and Pop brown sugar sugar-man flavor
  • and eggies with & white please.
  • Not salt & pepper
  • there is no such thing as a peanut butter and jelly sandwich in our home
  • peanut butter only
  • and he likes to tell me that he hates hot cheetos
  • but he has no idea...he has never tried them
  • but saw them once at school...and they were red!
  • Nope....never
  • Nash is my baby
  • it has taken me 8 years to finally become the parent he needs
  • I am scared that I won't live up to his challenges
  • but I one would fight as hard as I will
  • so, maybe I am the perfect parent for him
  • I can only try

Friday, September 13, 2013

I can breathe....for a while

My last post was about how our life has turned.  Life has been very sucky....really sucky.  I was raised in chaos....and I hate not knowing my next step.  And this past several weeks have been a wait and see kind of YUCK!

We had an official diagnosis of autism on August 19th but the report didn't come for 10 days.

Then we got the report but would not hear from the agency if they would take my son on, for 10 more days.

Nash started school on August 21st and went to school for 3 days...then we had the Rim Fire.  School was closed for a week.  Then school opened again........and we had another set of first day yuckies and worried that it could happen again.

Our school hired a new special education K-3 teacher over the Summer.  She quit right before school started.  Who does that???

The school was right on it and now 3 weeks later...we have a teacher.

We have an IEP in place...but not for autism.  So, waiting to get the autism IEP in place with the new teacher was making me crazed.

I was supposed to wait until next Monday....but this morning...after I dropped off my son in his classroom.....I stopped and introduced myself to her.  Luckily, the temporary teacher that had been subbing was there and the special ed teacher for the older grades introduced me to her.  And she was able to confirm that I can have my IEP this coming Thursday.

Woo Hoo! 

Now, is that going to make a HUGE difference in our lives.  Nope, it will be more change.  But, its a move forward.

And we are going to get some services from the a couple of weeks.

And we are filing for disability for our son.....sad but really....necessary.

I am breathing.

Tuesday, September 10, 2013

when the road is rough

  • Since school has started...the road has been rough.
  • After 3 days of school and the county was on fire and school closed to be safe.....the road was rough.
  • Now, we are back at school for another set of 1st days...this road is rough!
  • Only having a diagnosis, but still waiting to know what to terribly rough.
  • Being asked questions a gajillion times about why he has to go to school.....yes, its rough.
  • Sitting on a bench every morning, while we are at school way too early because of his, I can live with that.
  • Watching all the kids play, while yours sit in shear panic because of his surroundings....fucking rough.
  • Having people try to help....its nice.....but also makes it rough.
  • Finally hearing the whistle blow to go to class...and feel the tension so thick you could cut it with a knife....numbingly rough.
  • Walking your child to his class and waiting while everyone whirs around and your child is frozen....heartbreakingly rough.
  • Having the teacher come and know...your child is quietly...freaking out because you are going to leave.......horribly rough.
  • Seeing your child's eyes, as he look at you for comfort and his eyes are welling up....and he says bye.........fucking rough!
  • Walking away knowing you survived another war......and there was no winner....rough.
  • Going to work so you can feel like a human again............
  • Knowing your day is over and now you have to pick up your child and you don't know who will be there.......frightening rough.
  • Hearing your child say...I got lost in class today, I got lost on the play ground, people called me names, people said they hate me............tearfully rough.
  • working on homework....just rough!
  • And now is dinner time....battle stations.
  • the screaming starts...I hate you......I am not going to eat this...where are my chicken nuggets.....this is not protein, this is crap!  You can't tell me what to do.....I wish you were dead Mom.  You are an idiot Mom.....I wish you would go away forever.  I hate you.....then, rams a fork at me....hurts my heart rough,
  • I declare this day to be over...jammies then bed...Mommy has had enough....rough.
  • Allowing Dad to step up while he is crazied....out comes a prison Lieutenant.....that is fucked up ROUGH!
  • Pulling the lieutenant off the boy and asking him to leave....way fucked up rough.
  • Sit with the boy while he cries that no body loves him.  Who will love him?  He wants to go where there are no parents.  I tell him, I love him and always will.  I kiss his forehead and rub his back, I promise to always be there and love him no matter what he does......just plain rough.
  • Get the boy settled in so that he can cry himself to sleep.....broken hearted rough.
  • Wondering where Hubby Lieutenant went...been gone for hours now.
  • Reassuring daughter that this is will be fine.  fucked up rough.
  • Eat ice cream to make me feel guessed it...rough.
  • Wondering if I should lock the door or not....scary rough.
  • Later, hearing someone come in the house and hope it's your Hubby......nervous.
  • Being quiet and waiting to see what is what.....rough.
  • Asking if he would like to talk but that you refuse to fight....and he says.....I smell like your Mother because I am drunk.  Leave me alone, I am sleeping on the couch.  rough.
  • today...............was rough.

Sunday, September 1, 2013

we have an answer....autism

I have been avoiding my blog because...then I don't have to address all that is going on in our family.  But, after my last therapy session.....I am not avoiding anything...I am mad, scared, and feeling like I am in a foreign county and don't speak the language.

As you know, on October 22, 2012, I finally saw that there was something wrong with our son, Nash.  It rained and it became our first eye opener into...WTF?  I have been running and searching for answers since.  Not that I was questioning things before this date.....but, I had nothing concrete to say....what the heck is this?

On August 19, 2013, we got a definitive diagnosis.  Autism.  Not Asperger's, not PPD NOS, not ADHD


Even tho I knew it....I was not prepared for the shock of the confirmation.  The doctor that did the psych evaluation was very forth coming with information and preparation of us as parents.  He was not mean or accusatory or blaming....he was informative, in plain language and very matter of fact.  And I believe that he is 100% correct in his diagnosis.

But......that morning when we left our home for the drive to the clinic where this diagnosis was done....I was mentally preparing for a fight.  I have been fighting and yelling, pulling and forcing people to see that there was something going on with my child!  There was a problem that needed an answer.....and no one was seeing that it was a big deal! 

I fought to get people to look at what I was seeing.  And even when I got them to look....they, in many ways, just patted my hand.  Told me it wasn't so bad.  Yes, he would need some help but not much.  Yes, we will give you enough so you think we are doing something...but really, we are blowing you off.  I was getting used to people...professionals...telling me that well, it's a minor issue.  Even the case worker that set up the evaluation told me not to expect much because there wasn't really anything there.

So, while driving to the appointment, and meeting with the doctor, and filling out all of the questionnaires.....I was putting on my fighting gloves, I was getting on my armor, I was in hyper drive....I was ready for battle!  When I went in after many hours of paperwork and all of the testing he did with Nash....I was going to convince him that something was wrong with my baby!

And he told me....there was something wrong.  He explained in very simple terms the long and the short of what was going on with our son.


I have been calling it autism.  I have been reading many books about autism.  I have read so much on the web about autism.  I even put a magnet with the word autism on the back of my van.  I tell people everyday my son has autism. 

But, when he said knocked the wind out of me.  I went numb.  I was shocked.  I kept listening to him explain and waiting to fight. 


Her talked to us about Nash's current schooling, how he would make specific IEP recommendations in his evaluation, how teaching Nash will have to change.  He spoke about Nash's future and how what we are hoping for Nash may not be what is our reality now.  That there are many forms of fulfillment and just because its not what we expect...he will still have a fulfilling life.

I felt like I was hearing about impending death.  Cancer.  The end of the world.


When he was done...he shook our hands, we smiled, we thanked him, we held Nash's hand and walked to the van.  The sky was still blue.  The wind blew my hair.  A train with many cars whizzed by.  We all watched the train go by.   It was so very hot.  And Nash was waiting for his promised trip to Target to eat pizza. 

As I sat in the van to drive right calf seized into a charlie horse cramp.  But, it wasn't like a cramp I had ever had before.  It became a knot the size of my fist.  And the rest of my muscles were so very tight.  I told Hubby but it was like saying....God bless me, after I had sneezed.  When we got to the closest Target...I could hardly get out of the van...all of my muscles were tight and seized in pain.  I could hardly walk but we were at Target, pizza was waiting....and I had to move!

When we finally got home....I was a mess.  Hubby was a mess.  And Nash was Nash.  The same child that left the house this morning is still the same child with us now.  But, our world is different. 

I felt like my world ended.  But, we still had the same everything.  Everything is still the same colors, and shapes, and smells.  But, we now have an answer.  The answer I have been pointing to.  And now the answer is...autism.