Am I doing this right?

  I first would like to apologize to my readers: I am so very sorry that I have not posted anything new since October!!  Now with that said I could give you a dozen reasons as to why I did not post anything.  It's not that I ran out of things to say, our story is no where near done!!  It's just hard for me to express a lot of these situations when they are still happening.  Blogging is still new to me and I have so much to share.  I blog because I want families like ours to know their rights and I DO NOT want them to have to suffer the long drawn out process we have/had to!!

 Quite simply I stopped because I got afraid that I wasn't expressing it right. You see for the past 7 years I've pretty much kept our daily lives knowledgeable to our family and close friends(oh and the home care nurses).  After seven years I decided to blog about it ALL.  After seven years I decided to join this online community of parents with special needs kiddos. After starting this blog I started to explore the world of other special needs families.  I have found some amazing blogs written beautifully by some damn strong mamas!!  Oh then I found some more blogs about raising special needs kiddos written by some very courageous dads!  Everyone I find I am grateful for.  I guess in reading all these blogs I started to feel inadequate, silly I know, but true.  I read all these blogs and saw all their followers. Glancing at my followers, I started to fear my blog wasn't worth reading.  I stopped blogging...

  During the holidays while catching up with friends and family I'd give a summary on all things Ethan for the year and a 'what's next' update. Then they'd ask about how everything was going with the school.... they started asking me about my blog.  MY BLOG?!?!  They'd then ask when I would post again!!  I then realized just because they don't have a little avatar under my followers it doesn't mean they aren't reading it or that they don't care about it or me.  I think that whatever or however I am doing this blog it might not be perfect but it's working...it's getting the story out there.  I think I just got over my 'blogging block'.

  So with this stated I will try to post a new blog picking up where I'd stopped in my retelling of our story....I just have a few phone calls to make to make sure I have one side to it accurate.  Also I would like to share that I have recently gone back to school....so I can only blog after I study:) 

Ten(or so) things I HATE about you..

Dear Marysville School District,

I HATE you because,

You do everything behind my back, then when I find out you beg for forgiveness

My son has missed school

You can't stop saying my son is "healthy"

The stress you have put me through has sent me to the doctor!

You are DISRESPECTFUL in too many ways

When I'm busy dealing with you I'm missing out on my family

You are ruining my relationship with my son(s)'s teachers

I'm now afraid for my son's health while he's at school

You segregated my child

Your "system" is not a system

To you it's all about the money

You don't understand the meaning of stable

I want to dismantle a brick fireplace and use the bricks to test the windows at the district office

I have hateful thoughts


I swear more


After 5 months you still don't F**KING get IT! 

*IF you want to get technical there is some positive things that have happened since all of this started.  Maybe when I'm not blinded by hate I will blog about it. 

Nothing...

  Almost everyone I know has a friend that they met in elementary school.  It might be their best friend or it might simply just be an old friend they get together with every once in while.  They see each other and they just pick up where they left off.  When a child has a craniofacial difference and a trach it's extremely hard to make friends.  During the first meet and greets the other kiddos are more interested in asking why s/he looks the way they do and what's on their neck.  Ethan will not tell new kiddos why or what...he gets defensive and usually turns away.  If he says anything he'll shout "NOTHING!"  I believe this is his response to the usual "What's wrong with you"-this is the first thing asked by kiddos and even some adults 99% of the time.  Well Ethan is right to shout NOTHING, there is nothing WRONG with him.  He is simply just different...


  The more I processed what happened during the IEP meeting the sicker to my stomach I'd feel.  I couldn't believe that the very people who work to support their said "Vision" would be doing this to my son!?  To be exact their "Vision" is this;  "Working together to ensure each student becomes a successful and productive citizen in a diverse society."  Great vision, but the way I see it, that's a bunch of bullsh!t!!  How can children within this school district learn diversity?  Seriously, how can they learn about ALL the differences within our society if they are segregating the very children with differences?!!!???!?
  Don't get me wrong every one of these elementary schools we have been with have had a great team of staff members, excluding the 'district folks'. Teachers and staff that I have become very familiar with over the years. In fact I enjoyed listening to what the principal for Marshall had to say during the IEP meeting.  She seems very passionate about what she does and about the students within her school.  I was never against any one of these elementary schools.  What I was against was my boys being shuffled around. 
  A point I stress every chance I get;  If these moves keep happening the child involved might begin to think there is something "wrong" with them.... also an older or younger sibling being moved with that child might possibly resent the sibling or mom/dad over time because they always have to accommodate for their sibling.  This might not happen right away but when they are younger they don't notice everything.....but they do start to recognize why change happens and they understand it a little more and more as they age.  Think teenage years, you know when they start blaming everyone for everything:)  Yeah. Oh joy.  So I tried to stress to everyone that I didn't want Ethan to start wondering why it is always him that has to move...I didn't want him to question "Is there something wrong with me?"  Also to be honest I really dislike explaining to my other kiddos when something is changing or has to be done a certain way because of Ethan...it's a vicious cycle sometimes.  At one point while discussing things with our home care nurse Isaac stated that he did not want to change schools, he said he loves his friends and his teacher.  I felt my heart crack.  I made a promise that day, I promised Isaac that no matter what happens I will keep him where he is.  He seemed to take this and be content, you see I still had not involved the kiddos in any of this.  Ethan especially because he has a serious issue with change.  I don't blame him, he has seen more in his life than most.
We waited, my family and I.  We waited and my attorney kept us updated.  There was nothing.  They still hadn't called to say what the actual plan was.  We waited a month and then sent the school district's attorney this letter...

Your sacrificing my child's emotional well being because of his medical needs ?!?!

  Ever look at someone and think....Man I am so sorry that this is your job.  You think to yourself, this...THIS?!  This cannot be what s/he went to school to become....right?  This person has to know what is right and what is wrong...  How can they sit here and not feel guilty about cashing that paycheck at the end of the week?  I'm so disgusted by them and yet... I want to stare directly into their eyes and give them sympathy.  Tell this person that I am sorry for their loss.  For they lost them self somewhere along their way....

It's wrong! It's wrong and you know it is....

  Ever heard something said that made you so mad and disgusted that your whole body shakes in anger?  This has happened to me many times through out my life...not sure if this is good or bad.  Maybe I am simply more sensitive or I am more passionate in my belief of right and wrong...  However what I heard this time wasn't said directly to me...

Can you please listen to me?!?!!

  Ever had that conversation where you swear the person you are talking to has a list of questions they are obligated to ask and could care less about your answers?  They ask 'How do you feel about this' or 'What are your thoughts on this'....you voice your concerns and you pour your heart out....  Then they TELL you what THEY are going to do, which has nothing to do with what you said or it's completely opposite of "your thoughts"!  Why the F**K did you even ask!! 
  This is such a joy when it involves you or your family.  No really I love turning that lovely shade of red when I am furious because no one is listening to me!!      

Does Mom know yet?

  Have you ever felt like you were the last one to know something?  Yeah me too.  Ever had people talking about you behind your back?  Yeah me too.  Ever had people planning your kiddo's future without your involvement?  Yeah me too!!