Tuesday, May 3, 2016

May Day, Mayday, and Such

Things are moving.  Because, that is life and stuff.  We are (hopefully) through "Sick Season".  The very last of it has been vicious.  Like it resulted in making changes in life and plans.

We went on a Disney cruise for Spring Break.  It was kind of because it was our last secure Hoorah, with Gabriel graduating this May.  Perhaps he will be back...perhaps he will be trying out adulthood...who knows?  But it was also because we have limited options with Elise.  With her hurting and being unable to walk much, we either have to use a wheelchair or we have to find vacations that don't count on walking...at all, if possible.  If we use a wheelchair, she doesn't want to get out afterwards...usually at all...which leads to all manner of other things.

The one fun thing that gave a significant amount of hope that came out of the cruise was a tandem kayak rental.  It seems that Elise adores boats.  Of all kinds.  She wants to kayak alone, but is about as safe doing that alone as driving a car.  So, I have been pursuing options.  The fun thing to discover, is that she will happily ride and paddle a tandem.  She only almost beaned me in the head with a paddle a couple of times.  And was actually helpful moving the boat forward.  If she was without a paddle, she whined that she wanted one, but I could manoever us quite well alone.  SO.  It gave me hope that my fun place can actually be enjoyed by her for as long as she ends up being with me.  We can go together.  And she will enjoy it.  PLUS it is cheater exercise.  It actually is, in the meanwhile it is fun...and she sleeps hard after!

Speaking of unexplainable pain: 

We are now seeing a pediatric rheumatologist.  So far, I have been blown off by her and her nurses.  And disrespected by her blood work staff.  We got no real answers from the blood work and the x-rays.  And the only thing it secured us, was a recommendation for Vitamin D (significant deficiency) and an Aleve.  We have an MRI scheduled for this Friday.  I admit, that I am not holding out much hope.  I figure that they will find nothing after a morning of NPO.  NPO is pretty much a recipe for a day of disaster.  NPO is medical shorthand for no food by mouth...for x amount of time.  After which time they will sedate her and she will wake hungry, with a headache, and usually nauseated.  Which is super fun.

I would appreciate prayers for sanity and at least direction, if not answers, from the MRI.

While I am requesting prayers, I am really, really worried about how Elise will handle Gabriel's graduation and going to college.  I am already dreading it for me.  Losing my evening buddy will be hard.  BUT Elise gets weepy and weird just thinking about this.  She is already anticipating and was worried that he had moved out last week when he had only gone on a band competition trip.  He is one of her Most Important People and that transition is going to be huge.

I am currently trying to figure out how to sort meeting her social needs.  She needs friends to hang with.  Like *NEEDS*.  Not just at school.  So if you are a friend, you can expect phone calls this summer.  And we will limp through this whole teenager thing together.  And hopefully if I can iron that out, it will make this fall less hard.

Wednesday, March 2, 2016

Why Should You End The Word: The Historical Picture

I typically post the End the Word Day post on 3/21, as it is National Down Syndrome Day.  Today, I have a bigger post, my brain took off and got grandiose.

Last year, I decided that the heart of the disparaging use of the word "Retarded" was less the word choice.  (You know, find an unoffensive word to call someone...there are many synonyms and all that.)  And I boiled it down to this:

"If you can't use the "R" word, why do you need another word to cut and hurt?  Why do you need to find another disparaging word?  Why can't you walk away?  Why can't you use nice words with your friends?  Why do you need to tear your own worth down because of a silly mistake?

Look for the good.  Understand choices come from others' pasts.  Understand that you are human, and move forward.

If you can't say something nice, DON'T SAY ANYTHING AT ALL."

I believe the most "popular war" was that of World War II.  It was possibly the only war in the history of time that had a clear cut bad guy doing bad things that was clearly defeated.  There are BUCKETS of documentaries on it, movies, and books on it, because of that fact.

The  WWII concentration camps were used to confine "dangerous" political adversaries first.  Hitler was doing it to protect those in power, and the superior groups under the guise of protecting the country from groups who would damage their country.

Then, they decided to weed out the sick to strengthen the general population and keep them "safe".  There were euthanasia plans, panels, and those who carried them out.  Then there were horrific experiments performed on them.

And all of these things were allowed by the rest of the population.  No one said anything.  Because it didn't apply to them. 

It was a slow devaluation of certain lives...that quietly expanded...in both the groups targeted and the violence that was heaped onto the groups in isolation.  The sick became the physically disabled, the mentally disabled, the Romany, the Jews...anyone without voices...anyone without support...even those who would protect and support those that were having these despicable acts done to them.

The most horrifying dart of information that I got as a parent of a child with disabilities was the knowledge that the first group of people to be categorized, tortured, and murdered in the death camps were people with disabilities.  They were first line.  They are the unmourned of World War II.

If the entire population had banded together and said "NO.  No one deserves this." at that first time, at the first wave, I don't think the camps could have gathered the momentum he did.

Now.  I am not conspiracy theorizing here.  I am not saying that we are prepping for the next crazed tyrant.  I am really not.  I am saying that this level of disrespect of others is the beginning of that first wave.

And I ask you to ask yourself, what is that first ripple of that first wave?  Believing yourself to be better than your neighbor.  To scorn your brother.  To believe you must be superior to be valued. 

You are nothing without compassion.  You are nothing without love.  You are nothing without your brother.

End the use of the word "retarded".  End the belief that living life more slowly is bad. End believing that you must be superior from your neighbor to have worth.  Love those that show life is a full spectrum of abilities and histories.  Be the voices for those who have none by LISTENING TO THEM.  Learn the beauties of life that they offer.  Feel the struggles and triumphs that they have experienced.  Learn and grow and love.  You will be the better for it.

And in these political days, I highly suggest that you look for that respect in your next president, as well.

Friday, February 5, 2016

Itty Bitty Living Space

Today I went on a bit of a rant on Facebook.  I'd like the chance to explain myself a little bit.  Give some perspective.

My Facebook post:
"I don't particularly love having to pick up my kid in the handicapped pick up in the back parking lot because it means my kid is not ABLE to sit like yours and wait without being unsafe. But I do know that when I was forced to pick up in the regular carline, I got hands flailed at me, cussed at, and flipped off for taking so long.

Imagine my irritation at getting flipped off, cussed, and flailed at for trying to save you time by picking my kid up in the handicapped area.

DON'T be a TURD. Or I'll take pleasure at gumming up carline.

You'll mess only your own nest."

I get the big arm flail...you know the one...the one that asks WHAT ARE YOU DOING? with exasperation...about once a day in carline.  I get flipped off about once a week.  Today was a first time event this year, where not one, but two cars cut me off and blocked me from going down the other lane to avoid the carline, so I could go around back to get Elise.  I am not sure what they thought they were proving by doing this, especially as the principal goes around back and makes sure you are supposed to be there if there is too much traffic in the back.

Here's the thing.  I don't feel that IT'S MY RIGHT to get special treatment.  I prefer for my child to get help to remain safe and for us to be able to take our time without duress at every transition.  Especially as it is truly her body (and sometimes mind) that requires more time to plan movements as she gets in and out of the car.  But I don't WANT to block everyone else as my life moves in slow motion.  My life always moves in some kind of time subset from everyone else, I am used to it.  I cannot plan what will make a day go sideways, though, and if that happens, it's going to get weird fast. 

As a matter of fact, a friend posted up a comedian talking about his son with autism.  He said something along the lines that he never knew "how to describe taking care of a child with autism....  But during a festival, it all became very clear.  It's like taking care of your very best friend, after they have done waaaay too many shrooms.  While you yourself are on a moderate amount of shrooms."

Now, Elise has not been diagnosed with autism, but she does have a lot of personal similarities.  And I have, on more than one occasion, likened my life to Alice in Wonderland.  Things get keep getting weirder and weirder...and you know it's weird, but everyone that you are dealing with makes YOU feel like you are the weird one in the situation.  You are forced to change yourself and your expectations so many times, that you find yourself just as crazy as everything else appeared to be.  (And, for the record, I also said, all through high school and college that I absolutely thought Lewis Carroll wrote it while high.  You know the drill, right?  He thought he was being suuuper deep, and was smart enough that he managed to tie all the crazy to actual happenstance, political or otherwise, but it was still completely wacked out.  Yuh.  That.  You've all seen that guy once, right??)

EEEEnyways, back to my story, I am truly doing you a favor not to tie you into my brand of crazy.  So if you don't have a child with special needs, you may think that I am getting these absurd special privileges.  But let me explain this to you in a nice, tidy little nutshell. 

You know the scene in Aladdin where he tricks Jafar into wishing to become a genie?  Because Genie explained to him the paradox?  (https://youtu.be/SfTfXLLJlzM)

Well, the allowances may appear to be
"Phenomenal cosmic powers!!!!"

But to us, as special needs parents, it's really just allowance to get tied up into our
"Itty Bitty Living Space", where our child feels and IS safe.
So, do us a favor, and be patient.  Please assume that things are more complicated than they appear on the surface, because they usually are.