February 28, 2011

Just a Boy

There are moments when nobody would know.

Not many.

But some.

He is climbing the rope structures at the park. He is confident and secure in his ability to make it to the top.

He is just a boy: scaling the ropes; aiming for the highest bar.

He is taking a seat on one monster of a roller coaster. Grin from ear to ear. Anticipation in his eyes.

He is just a boy: ready to hear the clicks of the coaster as it climbs; ready to plunge and race at speeds so fast I can only count the seconds until the fun is over.

He is in a pool: gliding so effortlessly you would never know he has not had a single lesson.

He is just a boy: strong, sturdy and at peace.

He is eating an ice cream cone. He is riding the carousel. He is hugging me.

He is just a boy

These moments are glorious. I treasure them. And I wonder what that says about me. I know that I love these moments -- moments when the autism disappears -- because there is still a part of me wishing it weren't so -- wishing my boy was not saddled with this beast of a burden.

There is more to it, of course. There are still moments, even after all of these years, when I cringe. They are the moments when the autism hits full force -- in public -- and I become the one who retreats inward. Because I know that for every person in the world who understands -- people who know that my child is struggling to do his best -- there are many more who are simply ignorant, or at worst, self-righteous and judgmental and ignorant.

Hey people: You know what?

He is just a boy.

It is not that simple. But, yet, it is.

February 17, 2011

Rick Perry's Bullshit

As Texans, we always take care of the least among us.

The frail, the young, the elderly on fixed incomes, those in situations of abuse and neglect, people whose needs are greater than the resources at their disposal – they can count on the people of Texas to be there for them.

We will protect them, support them and empower them, but cannot risk the future of millions of taxpayers in the process. We must cut spending to keep our economic engine on track.

Texas Governor Rick Perry, Jan 18 2011

Excuse me, Governor Perry. Please tell me: what did you mean by that big bunch of nothing.

We will protect them .... but

We will support them .... but

We will empower them .... but

I think you had more meaningful words coming out of your mouth when you were whoop-de-dooing in your Aggie yell-leader jumpsuit.

My son is one of those Texans who could use a little help. I am a Texan. His dad is a Texan. We grew up going to Texas public schools and universities.

We pay taxes. Lots of them.

And we have spent -- hold your breath -- in the six figures trying to obtain the best services for our son, who has severe autism and apraxia and a soul as pure as you will ever find on Earth.

What have we gotten from the state of Texas in the way of help?

Ahhh, let me count it all up. Oh, yes, nothing.

He is on two state waiting-lists for services.

One wait-list is for therapeutic services such as speech and occupational therapy, both of which he has needed his entire life. They are crucial to his ability to one day live as independently as possible, as well as his ability to contribute to society. (Yes, I do, indeed, mean contribute to society, as a working citizen, a goal that is attainable, especially if we could get a little help from a government that, unfortunately, seems more interested in instituitonalizing its disabled citizens than in helping them pave the way to independence.)

The other wait-list is for respite services, which my family could have used years ago.

My son has been on the Texas wait-lists for an entire year. I checked in with the "help-line" yesterday and what do you know. He is number 27,936 on one list and number 14,693 on the other. Which means we might get some help from our government about the time I need a nursing home for myself.

Or maybe not even then.

My state's longest-serving governor is serious about the "cut spending" aspect of his inauguration speech. Preliminary budgets for the state of Texas include more than 16 billion dollars in cuts to health and human services spending.

What does that mean for those who, in the Governor's words, are "count(ing) on the people of Texas to be there for them"?

It means that if you are waiting for help, don't hold your breath. And if you have waited it out and, finally, have received a little government assistance, get prepared to lose it.

What's up, Gov?

Aren't you one of those "pro-family" Republicans? I have yet to figure what the heck that label means to you guys, but it sure doesn't jive with anything I consider "pro-family."

My son has a disabilty. He suffers from a neurological disorder recognized by every pediatrician in the world. Yet, we receive not a red cent in assistance from our medical insurer. We live in the the richest nation in the world, and, yet, we receive no assistance from the federal government. And we have yet to receive one bit of help from the state of Texas, even though our Texas roots run deep into the ground.

The one thing you could do to really give families a hand, Governor Perry, would be to speak out on behalf of the families trying so hard to maximize the potential of their special-needs children. We do not want our sons and daughters to go to one of our state's institutions for the disabled, where they will largely be forgotten, if not abused.

We are struggling under the weight of our children's disabilities.

And, wow, are we struggling: struggling to find and pay for the services that will help our children succeed; struggling to give our typical children the attention they deserve when their disabled brothers and sisters require so much; struggling to maintain our own identities separate and apart from the disabilities that rob our kids; struggling to even remember what a marriage felt like before every waking moment was dominated by worries.

It isn't as if Texas residents endure some unworldly tax burden compared to the rest of our nation.

It isn't as if Texas is somehow making up for its failure to provide for its disabled residents with increased funding to other areas of its social welfare network.

It isn't as if Texas is adeuqately serving our children with its anemic funding of public schools.

I know, Governor, that you sailed to victory in your campaigns. I know that my state is filled with enough Bubbas and gun-lovers and fat-cat-good-ole-boys to keep you around for another ten years or more.

I know that your loyalties do not extend to me and my family.

But if you aren't going to take notice of a "pro-family" need not being met in this state, would you at least drop the lip service about Texans whose needs are greater than the resources at their disposal. This Texan knows BS when she hears it. And I know my opinion counts for nothing, but I'd rather you not pretend to care about anything other than the economic engine behind your political career.

February 6, 2011

Off With the Cast, Into the Chlorinated Water: Hallelujah

It is off.

The cast is gone, and my boy has two good feet again.

Inhale, exhale.

I am so relieved.

Autism mothers everywhere can testify: there is great fear in facing the unpredictable, in trying to help your children deal with pain when there is a language barrier that transcends words.

When you struggle to hold your nonverbal seven-year-old while he gets a cast on his foot, you don't have time to think about the unfairness of it all. You just do what needs to be done in that moment--so that your child can heal the part of his body that doctors CAN fix.

That's the thing about autism, about severe autism--it teaches you to not think too far beyond the moment.

Your child has broken bones in his foot. Three bones, to be exact. (They told me two when the cast went on; turns out my son actually broke three bones in his foot.) That really sucks--in ways that parents of typical children cannot begin to understand. But what else is new? Everything about my life as a parent is far beyond what parents of "typical" children can understand.

This is just one more mountain.

One more obstacle.

And the white-coats actually know what to do in this scenario. They can fix broken bones.

For that, I am grateful.

Because my boy has his cast off.

And we are back in the pool.

I watched my two children this evening, as they swam and played in the water.

What a great equalizer the pool is for my son.

He cannot tell you what he thinks, what he knows, what he yearns for.

He can't even tell you that his foot hurts like hell.

He can't ask you what is going on, why he is feeling this unusual pain, why his life is not what it should be.

But he can swim to the depths of the pool. He can float like a jelly-fish. He can move through the water with speed and strength and confidence.

And he can laugh at his sister after she pushes him into the pool.

There are images in my life: pictures that carry me through pain I never could have imagined, and still do not know how to adequately deal with.

One such image is my two children as they were this evening: my daughter pushing my son into the pool and my son resurfacing with that beautiful smile on his face.

I watched my daughter giggle and call to her brother. I watched her climb up and down the ladder of the pool--playfully screaming as Daniel swam near to her, trying so hard to engage him in her world.

I watched him smile at her, in a way that he does not smile for many people. In a way that says, "I love you, dear sister, even though I may never verbalize it, even though I may never express it in a way that the typical world will appreciate."

It is amazing, to watch these two children--separated only by two years and two weeks... and a universe of words.

They share the same two parents, the same DNA, the same environment. And, yet, they could not be more different.

Like night and day.

One filled with words, drama, social graces and a desire to please.

The other largely trapped in an existence without words, without social understanding, without a grasp on what the world expects and why it is necessary to try, at least a bit, to conform.

And I am the mother to both of them ....

God help me.

I will take whatever help I can get.

Tonight, I am just happy that they both can swim and jump and splash.

That their bones bend and straighten and move--with no casts to encumber.

I am grateful to see them both laugh, and to smile at each other.