March 14, 2011

Brave Like Daniel

All kids can't be brave like Daniel is.
--Spoken by Olivia, sister to Daniel, March 13, 2011

There are things my daughter sometimes says ....

Words that freeze time for me, for a moment.

And in that moment I am aware of nothing, other than the tremendous love I have for my children, and the reassurance that if anybody was ever sent into my life directly from Heaven, it is my daughter, my amazing Olivia.

I cannot begin to imagine what it is like to be Olivia.

I am an only child, so I can't even appreciate what it means to be a sibling, much less a sibling to a disabled brother. When I consider that Olivia is growing up with an older brother who will always need her help -- a brother who is completely unable to talk to her, cheer for her, listen to her, pretend with her, scheme with her -- I wonder just how deeply autism has affected her.

Is her brother's autism one of the reasons she basks in the attention of her favorite friend at school?

Is it one of the reasons she can so quickly dissolve into tears when things don't go her way?

Is it one of the reasons she gets so frustrated when she doesn't accomplish something in a matter of seconds -- does her brother's disability explain her need to be able to do everything perfectly, and to obtain perfection immediately?

No better way to put it: It is enough to blow my mind.

So I am thankful for the moments, like the one last weekend, when Olivia says something that makes me pause ... and smile ... and refocus on the amazing capacity for love that exists within my daughter.

She was climbing the ropes that connected two park play structures. Her father encouraged her to climb even higher, and there it was:

"All kids can't be brave like Daniel is," she said in response.

And there was her brother, high in the ropes, as high as any child could climb.

Even though he cannot talk to her, even though she knows he is so very different, even though she knows he struggles with so much ....

Olivia sees her brother as brave.

Of course she does.

Because he is.

She could not have a braver brother if she searched the world.

He faces each day with joy and enthusiasm, and the purest love for the people in his life ... even though he cannot talk to us, even though he is diferent, even though he struggles with so much.

I am so thankful I have a daughter who sees it, and who loves her brother so deeply, and who possesses the ability to remind me of the countless reasons I have to be proud of her ... and her brother.

My Autism Mirror

It is easy to list the things that really suck about autism.

Even parents who have no experience caring for disabled children could guess the types of things I would put at the top of the list -- if they tried, for just a moment, to picture their own children struggling with an illness or disability.

They would wonder what it must be like to worry about the future and to grieve the inability to communicate with my son. They would try to imagine what it must be like to bury dreams and replace those dreams with uncertainties that literally can drive a parent mad.

But here is one of the worst things about autism -- and similar disabilities -- that only the veteran special-needs-parents will "get."

After autism slaps you around and kicks you in the ribs -- by forcing you to deal with the reality of what is "wrong" with your child -- it then does something even more painful.

It puts a mirror in your path.

A great big f'in mirror.

And in that mirror, you see not only the mistakes you make as a parent -- mistakes you are destined to repeat, even as you hate yourself for doing so -- but you also see the demons within yourself.

You see how much you grieve for yourself, as a parent and as an individual, even though it is your child who has really gotten the raw deal in life.

Score one in the selfishness department.

You see how you get so bogged down in the day-to-day of coping that you never manage to do the things you would like to do -- for your disabled child, for your other child, for your other loved ones, for yourself.

Score one in the unorganized, underachieving departments.

You see how much you wish things had been different. You look away from soccer fields and talent shows. You shut out the conversations of parents at events for your "other" child -- where nobody knows what it is like to wish that your son could just be "normal."

Score one in the jealousy and pity-party departments.

You see how sometimes you actually are angry at your child, even though it is the autism -- and not the child -- that drives the anger.

You feel your frustration rising when he stims -- because you wish he'd be doing anything, ANYTHING, else -- as long as it was something normal. (And, yep, I am not even going to put the word in quotes because, let's face it, I love him as he is but still wish he could just be normal, whatever the heck that means.)

You lose your temper when he strikes out at you, even though you know that if the tables were turned, and you were the one completely unable to talk, you would not face the world with one-tenth his energy and joy.

Score one in the bad-parent-who-loses-her-temper-and-does-not-deal-with-her-son's-disability-with-the-kind-of-patience-a-good-mom-would-have department.

The autism mirror never goes away and, man, does it shine a bright light on all your warts.

No matter where you turn, your mirror goes with you.

I sometimes feel like I can hardly function after I look in my mirror. I despise myself for everything I have not done, and for everything I cannot do.

But I know I am not the only one. And even though I cannot always see the parents walking with me step-for-step, they are out there.

A dad whose blog I just discovered tells it like it is:

Unlike the tales that Hollywood likes to tell, there are no saints or sinners when it comes to raising an atypical child. There are people that strap in, buckle up, and get the job done, and there are those that don't. There are no 'Saints' in this house. There have been times when either one of us wanted to strangle him. (Luckily for him it's never both of us at the same time). Handicapped children aren't intrinsically wonderful, beautiful, or even very much fun to be around. They're love-sponges that soak up all the love you can give them. And by that, show us that we have ever so much more love to give than we ever even knew we had. 'Mothers' or 'Fathers' don't always understand, but moms and dads do.

-- The Missing Piece


March 13, 2011

From The Boston Globe and Parade magazine

If the world were made up only of such people ....

I would not worry so much about my son.

The Whole World in His Arms