So what?

Timothy has spent his weekend on the computer.  I turn it off and try to distract him and just when I think I’m successful I hear windows8 chime in the background.  Its all he wants to do.  You Tube videos.  Sometimes Starfall (its a school program online).  So yeah, I let him.  He flaps.  ALOT.  I don’t even notice it anymore.  You know that old kitchen scale?  Its been leaning on the awesome side way heavier than the crummy one.

IBI starts tomorrow.  I”m cautiously optimistic.  Throw in a little scared as hell too.  What does this mean?  I’m not sure yet.  I guess “they” (the treatment team) will decide how good of a candidate Timothy is within the first six months.  Then comes the scary part.  IF they deem him inappropriate.  Then what?  Is he beyond help?  Can’t be fixed?  Nah.  He is what he is what he is…….and so on.  Whatever he is, I will love him.  If I change his diapers for the next twenty years(hope not!) I will love him. 

“What kind of life will he have?” I was asked once by someone.  At the time, I had no answers.  I excused myself to the bathroom and sat alone in anguish.  Now is a slightly different story.  I still have no answers, except the difference is that I have hope.  Hope gives me fuel to keep going day after day.  Tiny success takes us a step forward and the same day we can go back five.

I want everyone reading to know that I am not writing these journals for your sympathy.  That’s not it at all.  I’m documenting our story.  I want people on the verge of giving up to sit down and read and know that there is more.  That hey, someone else is going through the exact same crap I am.  That throughout the darkness of diagnosis there can be joy.  You just have to find it.  I promise you, its there.


Change is in the air

I haven’t decided if I like it yet.  But its coming, it is.  I apologize for my extremely tardy post.  I’ve been sick and just couldn’t get much done.  Two weeks have passed and lots happening here.  I left off at Hallowe’en and we had just heard about IBI starting.  Between that Timothy had been picked up by the Feeding Team.  Appointments and more appointments and paperwork and phone calls and more appointments.  Starting to catch my drift here?    There was also a safety plan introduced at school.  With the new demands placed on Timothy he has been getting aggressive.  While I definitely don’t want anyone to get hurt, this part is hard.  Where does it go from here?  Signing the papers allowing the staff to use non violent techniques at times of aggression was difficult.  On the outside I was smiling but on the inside I was screaming and hurt.  This was my baby.  I didn’t want anyone putting their hands on him.

The feeding appointment did not go well.  Basically  the end of it, I was asked to repeat a food journal-something we have done before.  That was annoying but ok.  The worst part was taking Timothy to school afterwards.  He is rigid.  Doesn’t understand changes in schedule or change period.  He fought me all the way to the car-spilled my coffee all over the road and scratched up my wrists enough to break the skin.  When I finally got him into his classroom he was grabbing at my leg not wanting me to leave.  His teacher and supports at school they are really great.  I got up to leave, fed up to here and almost bumped into the principal right behind me.  He wanted to know if I heard anything from the IBI people.  I answered him quickly and escaped to my car where I burst into tears.  Enough.

So……….this is about where I got sick.  A raging cold has been passed around at work and I couldn’t avoid it any longer I guess.  I was down and out but still had to cook and take care of these kids (because thats what a Mom does).  We had planned to visit my parents up north and that’s what we did!  Sick or not, we went and had a good visit and lots of good food.

Back to work Monday/Tuesday and Wednesday I had to meet the principal to sign the IPRC (Timothy’s yearly learning plan) that identifies him as “exceptional”.  I met them at 9am and we began with a prayer about Timothy.  I almost cried, it was beautiful.  Since I had been sick, I had all of my errands and laundry and cleaning (blah) to catch up on when I came home.  I cancelled today’s feeding appointment.  The aggravation out weighs the reward for me.   Next up tomorrow- signing the IBI paperwork!