Tuesday, April 27, 2010

Don't Worry...

...M is happy, engaged with his aides, his teacher likes him and he lights up when he sees her, and he is progressing. They don't see the regression that I am concerned about. They suggest we go for a more 'integrated' approach to connect skills our family needs to see at home with those he learns at school.

All is good.

What exactly is it I'm fighting for? Even I am starting to get confused.

Oh, Right...THERE'S The Anxiety!

I knew it had to be hiding in there somewhere!

I guess the reason I didn't feel it yesterday was because my brain knew that there was no way in hell the school district would actually do what they said they would...call me back with information about MY CHILD.

Yep, I waited here all flipping afternoon for a phone call. I even left two voicemails during that time. Nothing. Nada. Zilch.

I sent an email first thing this morning letting them know my disappointment and today's availability. Still...nothing. You'd think they would have gotten to work this morning, listened to my voicemails and thought, 'Shoot! That's really crappy of us to have not called her yesterday when we said we would. We should make that our top priority today.'

Alas, no, these people do not operate this way. They have zero integrity or compassion.

And so, here I wait, with a lump in my throat and the knowledge that I'm probably going to start crying at any moment. I've cleaned my house. I have drunk way too many cups of coffee. I'm listening to some really great music. And yet, all I care about right now is hearing what my son's future is; what my family's future is.

Please call, dammit. Please.

Good things come to those who wait. Good things come to those who wait. Good things come to those who wait. Good things come to those who wait....

Monday, April 26, 2010

Light A Candle, Won't Ya?

After 1:30 pm Pacific time today, I am supposed to hear back from our district.
I am trying not to be too anxious about the impending call, so B and I are on our way to the beach for a little distraction!

I am also trying not to get my hopes up very high...maybe that way I'll be pleasantly surprised?

Either way, please send us some good thoughts and good luck this afternoon. A lot hinges on this call.


Saturday, April 24, 2010

Planning For The Future For Your Child With Special Needs

My head is filled with pollen and my mood is a bit lackluster these days.  I've thought about blogging, but know that it would be more of the blah, blah, blah, hoping M will finally get what he needs, blah, blah, blah, hate waiting and playing bureaucratic games, blah, blah, blah...

So instead, I leave you with an excerpt from a recent post I read by the ever-amazing writer and autism advocate, Squid.  Family planning is something the other half and I have vastly different opinions on, thus we spin our wheels, never actually getting anything accomplished.  And, by the way, my opinion is right in case you were wondering!  Read on and then click on over to her site for the rest of this valuable information...

A lot of us like to put our hands over our ears and shout LA LA LA LA LA when asked to think about formulating a Life Care Plan, because that means we're envisioning our children with special needs having a future without us at their side.

But denial and avoidance does both us and our children a disservice. The time to think about planning for our children's future is now -- the earlier we start, the more comprehensive our planning will be. And the steps involved are both more involved yet less daunting than you may think.

Read more here.

Thursday, April 15, 2010

Say What You Mean To Say

One of the greatest things autism has taught me is how dear those around us who assist us in something seemingly small, offer a warm smile, or go the extra mile to make our lives a bit easier are.

I'm not saying I didn't take note of the good people around me before, I'm saying that maybe I didn't speak up as I should have to let them know that I appreciate them.

Many of us are not entirely comfortable with words or gestures of gratitude; myself included.   Is it that we as a society have gotten so far away from helping one another live life together, as a community, as a unit, that when we do work on each others behalf we almost feel surprised?  I'm not sure, but I know that I need you--each and every one of you--to help me walk through this crazy life.  I will try not to lean too hard on you, and I will try to lift you up when you need me.  But most of all, I, because of autism, will be more inclined to let you know just how much your lifting up means to me.

After much difficulty with my insurance company, I finally was connected to a person who gave a damn.  (and had an ounce of work ethic, I must also add)  She helped me accomplish something I'd tried for nearly two years to do.  Two years worth of hours of phone calls, transfers to rude and incompetent representatives, mysteriously lost or 'not entered' information about previous hours worth of calls.  And tears.  Lots and lots of tears. 

And, so, because this representative finally did the thing that no other seemed to be able to do, I made damned sure that I asked to speak to her supervisor to tell him so.  She humbly obliged a phone transfer and thanked me.
It took 30 seconds for me to do that, and I hope that in turn she eventually gets a pay raise or a promotion.  You never know...it could be something so seemingly small that assists her in life a bit too.

So thank you--all of you--for what you do for my family by reading this blog and telling others about the trials and tribulations of life with autism.  Thank you for emailing me and calling me to let me know you love me and are thinking of me.  Thank you for praying for us, thank you for lighting a candle for us.  Thank you for being kind to other families living with autism because you care about mine.  Thank you.

Friday, April 9, 2010

Things You Wouldn't Want To Have Happen In Front Of A Social Worker #673 -or- Look! My Kid Has An Emerging Skill!

Are there contests out there for longest, most rambling post titles?  I'm certain this one would win if there are.

Sorry I haven't updated in awhile.  It wouldn't be pretty if I did.  So instead, I will leave you with a short and sweet post about an event that occurred yesterday and was so NOT funny that it kind of WAS funny.

M receives some services through a local non-profit agency.  In order to qualify for their respite program, they require you to also apply for the state's in-home social services program.  There's lots of attempting to pass the buck going on in this great state.  Some of it I totally understand, other things become a waste of everyone's time and taxpayer money.

Anyhoo...we finally had our (knowingly unnecessary) meeting with a state social worker yesterday.  She asked me about 90 minutes worth of questions that we both knew were a complete waste of her time since I would never qualify to be paid as M's caretaker.  (I did not leave a job to care for him; I have always been a stay at home Mom to my kids)

The other half happened to be working from home as well and was sitting in a room adjacent to the one we were in, eating his lunch.  Between those two rooms is our open kitchen.  M was doing his typical I-can't-sit-in-one-place wandering which has of late lead to banana peels getting bitten, onions sampled, and any leftover food B may have left at the kitchen table being swiped.  But never before, I mean NEVER BEFORE, has M ever retrieved anything from one of our drawers or cabinets.

I recently tried teaching M that one kitchen drawer held his beloved chew tubes in it.  M is an incessant chewer (come take a look at our dvd collection-you wouldn't believe it!) and if his 'chewy' falls to the floor, he likely won't take the time to locate it again, but will move on to whatever else is closest to him.  So I thought it would be good to show him where he can find them on his own.  Backfire!

So here I am talking to a STATE SOCIAL WORKER, when she looks toward the kitchen and says, 'OHMYGOSH!'  I quickly turn to see M sauntering toward the other half with a flipping 6-inch long BUTCHER KNIFE in his hand that he is sort of flicking back and forth like he would his chewy...and then he actually put the handle in his mouth as he was holding onto the blade part.

Um.  Yeah.

Naturally I yelled to the other half, 'OTHER HALF!!  M HAS A KNIFE!!!'  No harm was done and the other half tried to make a not-very-funny joke that the good news was the knife was ridiculously dull.

As for me and my make-jokes-when-I'm-uncomfortable personality, I tried to quell the situation by saying, 'Hey, look!  M just showed us an emerging skill...opening up drawers!' 

We were very fortunate that this particular social worker had the best personality of any social worker I have met thus far.  She was actually really funny about the whole event, but also quite seriously implored us to please put locks on our drawers now.  I mentioned that I hoped she didn't think we were the worst parents in the world, and she told me, 'No, I have seen those.'  That made me feel better and saddened all at once.

So there is your wow-I-feel-much-better-about-my-own-parenting-skills story of the day!

Thursday, April 1, 2010

The Boy He Once Was

I am preparing for my meeting. I leave in one hour and hope I do not allow myself to get overly emotional. I am bringing a copy of goals that were made for M two months before we moved away from the mother ship; just over two years ago.  My, how things have changed in that time.  On this same goal sheet are progress notes like the following: 'The student has made good progress in increasing interaction with peers. He interacts in play with peers for 1-2 minutes. He is showing an increased interest in his peers. Often greets them by name. Smiles at them, touches them, laughs when they laugh, approaches them, and verbalizes to them. He inconsistently identifies at least 7 body parts. Attention to task is brief with frequent verbal, visual, and physical redirection. He attends well to singing and story time. He will walk in line holding an adult's hand.'

Or this...

'The student has made good progress in identifying colors, but performance is inconsistent. He does not identify his name, but verbally spells his name leaving out the 'l.' He rote counts to 5 consistently and to 13 at times. He identifies the number 5 and circle shapes.'

So, these things may not sound like a lot, but oh, what we would give to hear him say another child's name, to laugh when they laugh, to almost spell his name verbally, to name ANY body parts or count ANY numbers! This report was just two years ago...two years in which his and our world has crumbled and gone backwards, instead of progressing.

I also found a few photos that one of his old teachers had sent of him interacting with his peers. He was so happy back then. These are smiles we don't generally see anymore, and that in itself is a very difficult thing to stomach.

I'll leave you with photos of him and his classmates from the mother ship, as well as a photo with his best buddy and two teachers when he visited them five months after we left. Damn...

Look at him participating in this activity with his classmates!  

Here he is with two typically developing peers that were in his preschool class.  The blonde, C, was one of his favorites.  He would call her name as we got to school, beam with happiness, and then enter school while tightly gripping her hand...not once looking back at me for reassurance.

A visit back home where his amazing teachers took time out of their personal lives just to come see him...imagine that?!  Oh, what I would give to have these two amazing women back in his life again.  These are true teachers who go above and beyond to help their students achieve their goals.  I love you, B & G!  Thank you for a wonderful two years!