Tuesday, May 13, 2014

Misconception #9

"The only special need a child truly has is the need for a family."

I thought that meant that when I brought my special daughter home and provided her with enough love, family, prayer and resources,  that we would see an improvement and not a decline in her "special needs."  I was looking for our "look at her go" moment from the moment she moved in.

Misconception:  Love is all you need.  
Sorry Beatles.  Ya got it wrong  

In the beginning, she actually seemed to be doing OK.  She had some stresses and set backs, but over all, it was going well.  Then, she started coming home from school ready to explode.  Daily.  Then she had her first accident at school.  Then she stopped eating lunch at school

We tried:  
Allowing her to pick (literally) anything she wanted for lunch
a new and adorable lunch box
Talking to the therapist
adjusting meds
working out bathroom routines and schedules
asking staff for help

I went to school with her for lunch.  I was determined to find the reason behind the unmanageable behavior at home and the lack of food at school.  

I found:  Nothing
I tried:  Allowing her to eat the minute she got home from school instead.

And now we are at the beginning.  In case you are reading this because, like me, you are searching in the middle of the night in desperation to figure out you child's alien behavior, here is today's tip:  Monitor "In's and Outs" (When I worked on the floor at the hospital, they used that term to describe fluids going into a person vs. how much comes out.)  And!  Don't neglect to pay attention to solid waste (poop) as well.    Because believe me, we have not come to the END of the matter.  Things are really not coming out all right in the end...(Innuendo intended.)

Sunday, May 11, 2014

I Heart Haters

It is almost midnight and I am typing this on my IPad in the bathtub.
Why?
It is one of the only times of peace and quiet in my house.
So this will be short but I thought I would start from the beginning:
Annie was 13 and she had "special needs."
I had a pretty strong suspicion that The Lord was bringing us a child with "special needs" but at the time I was oblivious to what that term meant.
God may have kept that from me so I wouldn't over think it. (I tend to do that.).
They said she was mentally about 8 and that she had anxiety. I thought that sounded like a piece of cake.
I had seen and I knew many charming children with "special needs"  and many of those sounded just like that. She was going to be "easy!"
Disclaimer:  I do not believe the social worker or the support staff ever intended to mislead me. I believe they did everything in their power to be as honest as possible. I even agreed with them for about 6 months. 
Everything was going to change and I was going to find out just how broad of a term "special needs" is!
Why do I love haters?  Because they demand more. They call out an injustice and fight for what's right. I demand something other than the title "special needs".

Friday, May 9, 2014

"Y's" A Crooked Letter, I Forgot

Why write this?
I have been searching forever for ideas to help me with my "Special" little girl but to no avail.  Many blogs about kids with special needs are about the dinner menu or how hard it is to be a mom-taxi.  This is NOT that blog.  I will write only what I am experiencing with her special needs.  The rest of our life isn't interesting.

"Annie" was an "orphan" who as brought to us at 13.  I am 100% sure she was supposed to be ours.  But, she had "Special Needs."  Which!  is like saying there is "water" in the ocean.

NOT
ENOUGH
INFO
PERIOD

At first, I thought I would "learn as I go." Then I thought I would "find resources."  Then, I thought I would "talk to others."

Nope.

That doesn't work.  I found that many are unwilling to open up about issues they are facing due to privacy issues and the need to protect the identity of the child and family.  This is NOT helpful.  I intend to write to help our family and others in the same circumstance navigate the crazy life of a family with a "Special Needs" daughter (I hate that term, BTW.)

That's all for today.  And that's the Y.  In case I forgot.