Simsek Strikes

Autism Awareness - Part Three: The Down Side of the Up-Lifting

When I bacame an Autism Parent (because, let's face it, that's what happens when your beloved off spring is diagnosed) I chose not to be secretive about the whole affair.  As hard as it was to get my head and heart around this new reality, once I was able to regain some semblance of emotional stability I decided that we had some social obligation to help other people understand autism a little better.  So I told family and friends.  I told acquaintences who often saw Ellie and strangers who tried to engage her when we were out and about.  I answered questions and I did my best not to be defensive or thin-skinned about the whole thing.  

And as word got out, supportive people began sending me inspirational stories, emails, and videos about autistic kids and adults.  There was the artistic teen in Florida, the Autistic Prom King, the Basketball Star and many more, and they are wonderful, amazing stories of success.  At first, I saw them as beacons of hope that my own children could follow:  there was no limit to their potential.  This was a really good thing in some ways, because once you get a diagnosis no one can tell you what to expect.  No matter who I asked, no one could tell me if Ellie would ever be verbal, what her limitations might be, whether or not she'd be able to go to college, get a job, become independant.  They could tell me that they thought that she was smart, and they thought she had a good chance of catching up in some ways, but no more than that. So at first these stories really did inspire me not to lose hope:  to see that there was great potential for happiness and independance in her future.

But since those early days I have begun to see a down side to all this cheer.  Because while these kids' stories are amazing, they paint a picture too rosie to reflect reality for many families.  And that's dangerous, because as cities and states and the federal government are all looking for places to cut their budgets and tighten their belts, we can't afford to have that picture shape the conversation about services for special needs.  Already families in most states do not have access to the funds necessary to provide essential services to autistic children and their families and if law-makers and Joe Public believe that autism isn't that big a deal because of the basketball-playing wonder boy they saw on YouTube, many more children and families are going to suffer. 

Because autism treatment isn't a luxury, it's a necessity, and yet the cost of paying for it out-of-pocket is prohibitive for all but the wealthy.  The rest of us who planned as best we could for our children's futures but couldn't have predicted that those plans would include ABA therapies, speech therapies, Occupational therapies, Social Skills therapy and so on are left at the whims of state-funded programs. And the funding there is already pitiful and erratic.  Funds very from city to city, town to town, state to state.  Many states do not require insurence companies to cover even basic autism therapies such as ABA.  Often people are forced to move to other states to get necessary services, take out exorbitant, crushing personal loans, mortgage the rest of their lives in order to, as one mom I know said, "ransom" their children.  Because the alternative is to leave the fate of their child to chance in the hope that they'll somehow make it in a system that too-often sees special needs children as disposable. (And before some of my good conservative friends start emailing me about "private charities" I should mention that I have yet to find any charitable autism therapy organizations, outside of a couple in the UK and Canada and New Zealand.)

When Ellie was diagnosed, our area agency had resorted to trying to train parents to be therapists because there wasn't enough money to provide the ABA necessary to the 2 and 3 year olds being diagnosed with autism.  In spite of the fact that trained, professional therapists typically don't treat their own children because the whole parent-thing gets in the way, the agency could see no alternative because their funds had been cut so severely that they could no-longer afford to hire ABA therapists to provide the intensive therapy necessary to help. What happened to families with two working parents who couldn't attend the daily classes? What happened to children whose parents were too overwhelmed, too busy, or couldn't get the hang of therapy?  I don't know.  I do know we moved heaven and earth to get there, calling in the whole extended family so that I could get in with Ellie every day because it wasn't much, but it was all there was.  And I know that even for me, with all the support of my family and a great desire to do whatever it took, therapy with me was less effective than with a professional. It couldn't help but be.  Moreover, I know that I was lucky because Ellie's symptoms were so much milder than those of many of her "classmates."

And now?  Even that paltry funding that provided basic training for parents is in danger.  And the lives of other little Ellies being diagnosed today, and the lives of children whose challenges are much more profound than Ellie's, hang in the balance.  With good early supports and services, and intensive speech and behavioral therapies many more of them could become functioning, productive adults.  But without them, many more will be dependant on others forever.

So the next time you see an inspirational autism video or read an amazing article about someone with autism who overcame great odds and found success and happiness in life, by all means cheer for them, because it is wonderful and amazing. But remember that there are thousands of others, invisbile in these stories, just trying to learn to speak, to use a toilet, to make eye-contact, or to overcome myriad challenges enough to do the things most children do naturally.  And they and their families need all the help they can get if they're to have any hope for a brighter future.

Dear President Obama

I will never forget watching you speak at the 2004 Democratic Convention.  I didn't know you then, but as you spoke I was transfixed.  You spoke of unity, of commonality, of hope and faith in the best of humanity.  You spoke of our country as it should be;  of the things we should expect from one another and our government.  When you were done I was on my feet in my living room, applauding with tears in my eyes. 

"That man should be president" I said to Paulo.  "We need him."

And here we are!  You have given thousands of speeches since then.  You have shaken millions of hands and debated a variety of opponents.  You have inspired millions of us from all walks of life.  I have never felt so moved by a leader or so hopeful for our future. You have found the strings of hope and faith and idealism that tie us together.  In return we have given our money,  our time, and our hearts.  We have invested you with our hopes and ideals.  We celebrate your victory as the victory of optimism, unity, and intellectualism over fear, division, and anti-intellectualism.  

It is a huge weight in a time that is filled with uncertainly and danger.  You step into problems and issues that are anything but simple or easily fixed.  And adding to your burden is the fact that, while in you we each see a reflection of our own hopes for our country, we are by no means a homogeneous group.  What we each want and expect of you is as diverse as the country itself.  With so many hearts on the line, you are no doubt aware of the corresponding risk of disillusionment, cynicism, and despair.  No one can be all things to all people.  Finding effective solutions to issues which have historically divided us will inevitably alienate some of us, and keeping the this vast coalition together may prove more challenging than compiling it has been.  But not finding solutions is more dangerous still. 

As I write this I am elated.  I have never felt such respect and pride in a political figure or movement.  I can't deny the optimism and joy that your election has inspired.  And now, as we look ahead to the next four years I hope that you can continue the spirit of cooperation and conciliation that has marked your career and  your campaign.  We need your intellectual rigor, your pragmatism, your statesmanship, your gift for bringing consensus in the midst of emotional division.  We need your dedication to the betterment of humanity, and your compassion for the least among us. We need you to push us forward together and to keep us focused on our goals.  You've inspired us to hope again.  To cast down our cynicism and hold up our heads. Now, as President, we need you to prove to us that together we can can in fact bring about one nation united again and dedicated to living up to our ideals here at home and across the world.

Our future, and our children's future, depends on it.

Halloween Scare!

Sundays are family day here.  Typically, we get together with my parents, my brother, and his girlfriend, Crystal, to eat, laugh, play and visit every Sunday.  But this week we had some seriously uninvited guests arrive just as the preparations were getting underway.  I opened my door, and there they were!

I can't remember the last time I had such a fright! It's hard to believe that two such lovely faces could become so terrifying! Thanks for stopping my heart, guys!

A Political Field Trip: Obama at Mack's Apples

Yesterday we had a unique opportunity to introduce the kids to the political process up close and personal:  Barack Obama was scheduled to speak near my parents' house. 

For the first time in my voting life, it would seem that all of the my family--Democrats, Republicans and Independents alike--are all enthusiastically pulling for the same candidate in the upcoming Presidential election.  So, when I brought up the idea of attending the rally to my parents, and they brought it up with my grandmother, everyone agreed it was a good idea.  Neither my parents nor the older two children had ever attended a political rally before, and the realization that we could have this first together made it even more special. It took some doing to get enough tickets, to figure out what and how to pack, and to organize the outing all together with three small children, but it was worth it.

Together we hiked from my parents' house to the rally site, where we joined the incredibly long line of ticket holders that wound down and back the street in front of Mack's:

Security was tight, with metal detectors and swarms of Secret Service, but much more thorough and efficient than airport security, so the line moved pretty steadily.  Once inside we staked out a spot along the rope line and settled in for the rest of the wait.  The clouds were hanging low and threatening rain, but the crowd was undeterred. The event was sold out and there were crowds of people without tickets waiting at the gate for the chance to hear him speak.

The atmosphere was so positive and friendly and excited--it was a great introduction for young and old alike--and the tone was unfailingly up-beat.  There were lots of families gamely braving the wet, too, even without seats or diaper bags.

When Barack was finally announced the crowd cheered even louder as the rain began to fall. 

Unfortunately, by that point Lexi and Spencer had had enough of standing around and listening to adults "speechifying" and were ready to go.  They had their buttons, they'd seen Barack, and now they were done.  My mother selflessly offered to take them home and feed them lunch (long overdue at this point) while Dad, Gram, Ellie and I stayed to hear him speak.

He did not disappoint.  He did not cut short his speech or stand under an umbrella.  He stood in the weather with us and connected.  Before long, the rain stopped and Ellie got down to romp in the damp sand with the other little ones while we listened.  In spite of the weather and the long time spent on our feet, it was a great event!

He arrives!

We Need a Good Laugh, Right?

This should do the trick:

Sarah Palin Debate Flow Chart

This has been making the rounds, but if you haven't seen it yet, here it is.  Priceless. 

Morning Laugh

Oh, this is priceless!  It's just as incoherent as the real interview, but fabulously funny instead of cringe-inducing!

Cuppa Invader Palin

Say 'Hello' to Cuppa Invader Palin, my catchy new moniker. At least, that's what my name would have been, had I been born in the Palin family (shudder).   How do I know this?  Why, the Sarah Palin Baby Name Generator told me, of course!  Go ahead:  find your alter ego.  It's better than crying or spouting obscenities every time you hear her name. 

Of course, that might just be me....

Caution: Laughing this hard may result in aching ribs!

If you haven't seen this, you should.  Tina Fey just nailed it!

Kindergarten Pundit

Like many families across the country, we've been following politics avidly for the last year and a half.  Okay, so we probably follow politics more than many people do every year, but it becomes an especially hot topic of conversation as we approach an election.  We read everything we can get our eyes on, watch all the news, listen to the radio, and discuss the issues and distractions with vigor.

So the kids can't help but be aware of our thoughts, feelings, and opinions on the subject.  And apparently they're beginning to form a few of their own, too.

As we were driving home from our local diner this morning Paulo was noticing that so far the Obama signs he posted locally last weekend are still standing.  This was especially important since he'd had to drive to several different towns to collect the few that were left at the local campaign offices.  Lex took note of the signs and the obvious relief that that they were still standing and then asked the sensible thing:

"Why did you put up those Obama signs, Daddy?"

"Because we would like him to be our next President.  We think he'd help our country to be better than it is right now. So hopefully some people will see our signs before they vote and decide to vote for him!"

"That won't work, Daddy!  Those people are still going to vote for John McCain, you know.  They just want the same old president we have now!"

Of course, Paulo and I were laughing too hard to respond.  Besides, she's probably right.