Living in Holland

I think that if a person came to me and asked what is the first thing they should read related to disabilities, I would have to say “Welcome to Holland” by Emily Perl Kingsley.

This particular piece is an essay that describes wanting one kind of life and ending up with another that leaves a person totally unprepared for their reality.  I didn’t want to go to Holland.  I wanted pizza from Italy.  I wanted a job so I could afford to do anything I wanted in Italy.  Life would be grand if I could ride around on a Vespa with wind in my hair with only thoughts of what I was going to serve for dinner.  I think of family laughing and joking sitting at a table at the local winery with the late afternoon sun peeking through the grape vines.

Instead, I worry about if Sam is getting a proper education.  I am angry because the educational system told me that learning would take place once the behaviors were under control. The behaviors are better and the teacher did say that Sam is reading at about a 3^rd grade level.  Should I be satisfied with this latest news?  I am so hard on myself wanting a child at grade level who has intrinsic dreams of becoming whoever he wants to be.  When the standardized testing results come in the mail and the bar is at level 1, I have to put it aside and make myself believe that it doesn’t matter.  I can’t always fool myself because it does matter.  What will my child grow up to be? 

Being a single mom it is almost impossible to hold down a job.  I have spent the past 2 mornings in meetings at the school as I watch the CSE Chair put all of her information on a iPad.  Thoughts were swirling in my head wishing I could afford one. There is family reimbursement for this learning device but I can’t seem to get the right people to say, “Sure, I will help you. What do you need?”  I rely on advocates to help me sort out how I can get educational devices paid for.  I am still not sure if Sam will open an iPad for Christmas.

I am surprised that I have made it this far and have what I have.  It’s not the best stuff in the world but it is stuff and that is all I need.  To me, the system is very unfair.  I need to stay below the poverty level so my son can have all the services that he needs or can get.  In Rodney’s Peete’s book, Not My Son, he quoted that his family spent $164,000 a year for services to meet the needs of their son.  I can’t even fathom making $50,000 a year besides trying to pay for services.  Even for me writing a book, I’ll say when it gets published, will jeopardize what I have. 

Life has chosen that Holland is the place to hang my hat.  Ok, Holland has pretty windmills and gorgeous tulips.  I have to honestly say that the people of Holland are the best people I have ever met.  Thank you everybody!

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 <a mental patient>. b: mentally disordered, mad, crazy.

I choose being an intellectual as my definition of mental.

*The photo that I use for my background was taken by Sam.