Sunday, September 21, 2008

hoop jumping

Having a child with special needs
has taught me many things--
PATIENCE being first and for most
(I am still working on that)
That even though things are "Normal"
that doesn't mean everything is Normal.
It has taught me that doctors don't know everything
and that some teachers think they do.
It has taught me that nothing is as easy as it should be
and you have TEAMS of people who like to meet
to talk about your child.
It has taught me that people like labels
so they can figure out where you fit
and how they should treat you.
And it has taught me that labels HURT!
But more than anything else
it has taught me the fine art of

Hoop jumping you say?

Why YES!
I should be a professional by now--
and yet sadly i am not.
I had thought about joining a hoop jumping team
but then i realized it was HOOP DANCING--
and we all know i have two left feet.
Dancing and jumping are very different things.
Dancing fun---
jumping not so much with a weak bladder--
(but that is another story)

There are many different kinds of hoops
that i have learned to jump though....
The government has their set of hoops
which can be scary if you don't jump just right and fast enough.
And then there are the hoops that the school has imposed
and shall i mention those insurance hoops?--
sometimes they can be rings of fire--
All this jumping is enough to make anyone tired--
and frustrated!
Hoop jumping can and most times is
a SLOW process--
a very slow process.
That often involves
TEAMS of people
and lots
and lots
and lots of

Now here is the problem with
often you don't know all the hoops
that you need to jump through,
and you need others to show you where they are.
Sometimes your hoop jumping involves others
doing the jumping---
and maybe they are not as proficient at it as you are.
And more than anything else
requires much patience.
(did i mention that i am working on that whole patience thing)

We have been jumping through hoops
for atleast a year now--
trying to get my son an AUG COM
(stands for augmentative communication device)
since his ability to communicate is limited
it would be most helpful.
Seems straight forward enough--
kid doesn't talk--
needs an alternative way to communicate--
simple enough for me--
and yet......
(this is where the patience and the hoop jumping come in)

So we were getting close
to having all the ducks in a row
most of the hoop jumping was done--
one final hoop left
and then we would move on to bigger hoops--
(that is a sign of progress--I think?)
(Did i mention I am working on that patience thing?--maybe i have...)

I had seen all of the file regarding this AUG COM
and knew that we were getting close--
only to get a new case manager
who couldn't find the information or the file.
I was like a balloon that had been popped--
instantly deflated...
All of this work for naught...
all that time a hoop jumping
just to have to start over.

The thought of having to start over
was enough to make me sick...
I felt defeated,
but started making calls
to get the process rolling again
and much to my amazement
I got this call out of the blue
regarding this the other day....

I about jumped out of my skin
I was so excited
that this is actually going to happen.
That finally my hoop jumping is getting me somewhere...
And the best news yet is that the meeting will take place this week.
One TEAM will meet with the other TEAM
and i will be there as the umpire
to make sure everyone plays fair
and that the rules are kept.

Actually i will even get a say in this--
only because i have been such a good hoop jumper.
Wish us luck!

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