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?

Say what you mean....ASK!

Feeling kind of bummed.  Watching a special on PBS - ADD and Loving It.  It is about Adult ADD (Attention Deficit Disorder).  While I understand it, I don't always like it.  I love people, don't get me wrong.  It can just be frustrating to figure out where ADD (ADHD) starts.....and ends.  My brain doesn't always (rarely) thinks outside the box.  My family frequently lives outside the box.  Our brains are different.  Not better, not worse....just different.  AND I've been dealing with it for so long that sometimes I forget to use what works. 

I have been recently reminded to remember to probe around a situation that starts to get sticky.  I need to remember to ask about the thought process....or end result.  There is usually more to the story.  Actually, this is not only good advice for ADD.  It is great for kids (and some adults, smile) in general.

I think one of the best examples I can think of involves wings.  Costume wings for Halloween to be exact.  More years ago than I care to admit, my daughter asked me to make wings for a costume.  She picked awesome shimmery material.  I bent coat hangers.  Hand stitched the material around the hangers.  They turned out pretty awesome....if I do say so myself.  She liked them very much.  Costume party date for school approaches.  I come to help for the party.  She will NOT put on the wings.

I do the typical parent things.  Put them on says I.  No says she.  Back and forth.  This is really dumb as I look back on it, but I start to worry about the other kids will be wearing their costumes and she'll be walking around in her regular clothes.  What will other parents think?  Her mom is AT the party and her daughter's not wearing a costume, what's up with that?  

Finally, we're in the bathroom where kids were changing.  I ask WHY she doesn't want to wear them. She tells me she doesn't want to wear them.....because it had been raining and they might get wrecked. 

She is very black and white.  I have numerous shades of gray.  This has caused many clashes in our family.
I need to start asking why or what the thoughts are BEFORE I think she is just being defiant.  I need to realize that the extra time spent finding out more about the thought process actually saves time from frustration when we are both working toward different goals.  Also there are many times I am more worried about what others will think than about how she feels.

Lots to work on, but even just writing this out helps me remember that the frustration passes.  Sometimes we will be working toward the same thing, but there will be many times we will not.  How I choose to handle is going to a big part of how she learns to deal with other people.  Work in progress.....always.  Keep learning.  Remembering that at all times, love covers many family issues.....even ADD.

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

I've read others now figured I'd try Blogging...

I have enjoyed reading blogs of other people and I like to write so I figure I will try blogging and see how it goes. I'm hoping it doesn't become like ONE more thing I feel I HAVE to do. I don't really need anything else like that in life right now! Already I notice that typing goes much faster than hand-writing in my journal book. However, I'm sure I will not be quite as forth-coming with info here as who knows who reads it?

Which is part of the reason I have not blogged to date. A little too much watching of the evening news, me thinks!

So a little about me (and my header line):
Recovering perfectionist....used to think it was possible to seek perfection, admirable even. Gave me a good reason/excuse? to procrastinate..still does on occasion, hence the recovering part. Now, I've realized the closest I will ever get to perfection is moving closer to God...who knows ALL about me and loves me unconditionally anyway.

ADHD...dealing with school for kids, our family life, etc. I have learned a lot and continue to seek patience in looking at a different, often very creative, view of the world.

Strong-willed (not me)....hubby, kids, sometimes it feels like it's me against them. However, I admire their strength...no one walks on them or rains on their parade!

Teenager...yup, got one at home (makes him sound like a pet!). So far, not so bad. Trying to deal with the whole being more of a coach than parent at this stage.

Only by the grace of God...no way I could do this on my own!

So, enough about me for now....how about leave a comment with your blog and some info on you?