We KNOW what we live.....

I have had this thought in the past, but it was made glaringly clear again today. I am a parent representative for our district on a special ed parent advisory committee (PAC). We are a small group of parents that meets at our county ISD monthly and have a parent meeting one night a year. We are the voice of parents to the school district which trickles down into the individual school districts. We are there for emotional support....for each other....and for other parents that may not be as far down the road from diagnosis as we are and/or may be dealing with the special ed system for the first time.

There are varying degrees of issues that we have experience with: ADHD, Autism, Cognitive Impairment, Emotionally Impaired, Physically Impaired, Learning Disabilities or combinations of any of these. We were discussing the chance of reduced funding and what/how legislators are dealing with it OR not dealing with it.

The point that was made obvious today though is that we are informed and know about what we deal with or have learned about. "They" (legislators, school employees, other parents, other family members) don't always understand what we deal with because they don't live it every day. We expect "them" to know what our lives are like when there is no possible way they can understand unless they have something or someone similar in their life. I believe this is an unfair expectation of them....and us.

A meltdown to someone else looks like our kid is being rude to others and us. Sometimes it is, but often times it is because they feel safe with us and have had to be on high performance to function in the everyday world. Something I sometimes take for granted. My brain isn't going 160 all the time unless it has help to slow down and focus on one thing. Many times, my child's brain is. I can (pretty much) recognize facial/social cues to know what the other person is thinking. My child doesn't always....and will keep talking and talking (picture the Energizer bunny, smile).

Special ed and our kids/family life is just one small piece in the puzzle of life where this happens all the time. We expect someone to understand where we're coming from. However, we are looking at the situation with what we know and have learned by living it every day. Another person expects the same thing and may be frustrated when we can't understand why something is a big deal.

I knew very little about ADHD, medication, counseling, etc. until our family started to deal with it. I probably was one of those people that has babysat or looked at a kid and said why can't they just listen better, try harder, etc. For the fact that my eyes have been more opened to what is going on around me, ADHD and our family issues have been a blessing in disguise. I would like to think that I have become a better, less judgmental person for walking the road we've been given.

In an effort to help others know what we live, I hope that we are willing to learn and experience what others are living through. We will never truly experience what the person is dealing with, but maybe they can give us a piece of a puzzle that will fill in a big picture of working together to be more understanding.

Job 15:9 (NIV) What do you know that we do not know? What insights do you have that we do not have?

Different, not less

The title is a quote from the made for TV movie, Temple Grandin.  I picked it up at the library after seeing part of the Academy Awards.  There was a woman hugging the star of the movie.  Later, I found out that was the woman the movie was about.  The woman wore a cowboy type shirt.  The moment seemed a little different than what is normally shown on those award shows. The movie won quite a few awards.

My daughter watched it first and said it was good.  I later watched it with her.  I agree.  Through the movie and some further looking around on her website, etc., I discovered Ms. Grandin is autistic.  However, she is also a strong visual thinker and.....a PhD.  She thinks in pictures.  She was picked on mercilessly in school.  One of the things she would tell people is she was different, not less.  This is definitely true of Autism and other mental differences, but also for anyone.  We are each different from each other, but no one should be made to feel any less worthy than someone else.

I have the pleasure of serving on the parent advisory committee (PAC) for special education from our school district.  Many people don't even know there is such a thing.  I didn't.  I have learned a lot about special education....and the children they serve.  There are many misconceptions regarding special education and the children it is meant to serve. Pictures of the short bus or seperate classrooms may have flashed across your mind just from the mention of special ed.

As a parent, it is intimidating to go to a meeting where there are many school people there that seem to know more about your child than you do because of tests they have done.  Teachers and staff usually have numerous meetings in a day where it can be easy to forget that each parent needs to hear the same spiel they gave the last parents.   There is almost always an attempt to "mainstream" the special ed student.  This can be a good thing, however, it seems that we are trying to make that child conform to the "normal" way of thinking instead of learning more about how he/she learns best.  Sometimes it is just realizing that they may need to have things slowed down some to keep up.  It is difficult to watch children struggle or get picked on for something they cannot change.

I went to a conference that was aimed more at teachers, but also applied to parents.  There is an incredible number of hoops and reporting requirements that special ed teachers have to jump through.  I gained a whole new respect for the staff at our school and all schools.

If you have a special needs child or are a concerned parent, I urge you to remember that they may be different.  However, they deserve no less than our best when we work things out with school, home or trying to hit the ever  moving target of  "normal".  Normal is overrated. 

1  Corinthians 12:14  (The Message) I want you to think about how all this makes you more significant, not less. A body isn't just a single part blown up into something huge. It's all the different-but-similar parts arranged and functioning together.

Special Needs Kids - Italy or Holland Enjoy the sights!

The other day I had been feeling kind of down. I felt like I was losing at the game of Life. I was feeling overwhelmed (I HATE that feeling). Over the last few weeks, I've had a few dreams die....BUT that leaves room for new dreams.

Since then, I have reminded myself that my spiritual armor is always there just WAITING for me to use it. (Ephesians 6:10-18, next post) So as I put on my shoes of peace and grab my shield of faith, I believe I was led to an explanation that helped me make it through that day...and those that follow.

I wrote the part between the ===== to the resource room teacher when I found the following as I felt it would help some other parents as well.

I found out later that Emily Perl Kingsley (the author) had a Downs Syndrome son and wrote for Sesame Street among other things. Further info I found out is listed at the bottom. I believe these words can cover many disabilities - visible or not.
===============================================
I was clicking to check something else, but this was at the top. I think I
was supposed to read this today. I believe this explains things pretty
well. Guess part of the hard part is realizing I'm in Holland....and the
special needs aren't always visible which makes it hard for others to
understand sometimes.
Found on
http://imom.com/brewing/
10/31/07
================================================
Encouragement Story
Parenting a Special Needs Child

By Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a
disability to try to help people who have not shared that unique experience
to understand it, to imagine how it would feel. It's like this:

When you're going to have a baby, it's like planning a fabulous vacation
trip to Italy. You buy a bunch of guidebooks and make your wonderful plans:
the Coliseum, Michelangelo's David, the gondolas in Venice. You may learn
some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your
bags and off you go. Several hours later, the plane lands. The stewardess
comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and
there you must stay.

The important thing is that they haven't taken you to a horrible,
disgusting, filthy place, full of pestilence, famine and disease. It's just
a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than
Italy. But after you've been there for a while and you catch your breath,
you look around and you begin to notice that Holland has windmills – and
Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy ... and they're
all bragging about what a wonderful time they had there. And for the rest of
your life, you will say, "Yes, that's where I was supposed to go. That's
what I had planned."

And the pain of that will never, ever, ever, ever go away, because the loss
of that dream is a very, very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy,
you may never be free to enjoy the very special, the very lovely things
about Holland.
----------------------------------------------------------------------------------------
Emily Pearl Kingsley’s article has been widely circulated in support groups and medical circles.Please credit as follows: As published in “That All May Worship and Serve,” July, 2002, as published on the United Church of Christ Disabilities Ministries web site at http://www.uccdm.org/2000/07/21/acceptance-of-your-child-welcome-to-holland/ Most recent contact information for Emily Pearl Kingsley: 12 Justine Ct Briarcliff Manor, NY 10510-2534 (914) 923-2995

http://en.wikipedia.org/wiki/Emily_Perl_Kingsley