Thursday, September 4, 2008

Choosing to LIVE with Autism

I heard the door slam. I heard the spit fly. I heard the scream. My blood pressure spiked. My heart sank. You may think I merely relate an episode of typical sibling rivalry found in just about every household around the world. (Well, then again, I’m not really sure if a Mongolian family living in a yurt on the desert dedicated to raising camels experiences this same kind of thing – but I’ll err on the side of inclusion and say, “I’ll bet they have their days too.”) No, I refer to something a little bit beyond the pale. Here at Wisteria Cottage we live with autism. I emphasize the words “LIVE WITH.” It frames our life, adding particular constraint, but we live our lives just the same as all the rest of the families who juggle siblings, chores, schooling, vacations, illnesses, and so on. Each day presents new opportunities to spread our wings, soar in the face of danger, smile at our progress, and land into bed at night with the satisfied exhaustion of knowing we gave it our all.

But what about “those” days? How about the time one daughter had her wisdom teeth out, another nursed the final stages of a cold, a third battled homesickness in a dorm 600 miles away, mom stumbled with exhaustion, dad staved off a compelling need for napping … oh did I mention it was 100 degrees and stifling as they all remained sequestered indoors trying to maintain sanity and meals and entertainment and education and THE CALM ENVIRONMENT THAT AN AUTISTIC SON PREFERS? [Now return to the opening lines of this post and read it again through that lens.]

I love choices. Every day I have many choices as I face the life God has selected for me. Some days I glide through with confidence and poise. Other days I resemble a PMS-infested, alligator-seeking wrestler. I want to speak to God and I want to do it right now! “Hey!” I bellow, “I didn’t read the fine print all the way to the bottom! I certainly didn’t sign on for THIS MUCH challenge! I can’t do it all!” Then I fall into a puddle of pity. Dramatic? Sure. True? Absolutely. I fall down in failure so often I’m amazed I have any knee cartilage left.

Now, I don’t need to add that most days follow a relatively regular course without so much collapse and hysteria, but I should point out that my son has autism EVERY DAY OF HIS LIFE. Always had, always will. You don’t outgrow it. You don’t cure it. You don’t even understand it. But you do endure it. You live with it. You manage it. You love him as deeply as all the rest of your kids, even though you have to work twice as hard to make a fraction of the progress. I’m not imagining some hypothetical life of attention to special needs – I LIVE IT!

Last night when I tuned in (on my laptop) to hear just what “Sarah” had to say and why I should think about supporting her, she spoke directly to me in words that I could have spoken myself:

Our family has the same ups and downs as any other ... the same challenges and the same joys. Sometimes even the greatest joys bring challenge. And children with special needs inspire a special love.

Now, I do not intend for this post or my blog to endorse or support any candidate (remember my header “Whatever is lovely …” – definitely NOT politics), but I do wish to include her words because they echo what I hear every day all around the blogs, in my local market, at my public library: We may be different/challenged but we live and love just like the “normal” families.

On a fellow blog I commented:

“I have always been amazed at the notion that if "I" couldn't imagine doing it then it must be wrong. How silly is that logic? I couldn't imagine just about every invention man has come up with (or even the few that my husband has blazed the trail in discovering and profiting from greatly), so are these great men and women wrong or bad or stupid for carrying out their course?

Often when people discovered I had a severely disabled son they pitied or sainted me on the spot. When they discovered I had TWO handicapped sons I floated before their very eyes. When my three daughters showed up eyes narrowed. When they learned I homeschooled they flipped. "I can't imagine how you do it ...” "Don't you know what causes this?" and other unsavory remarks quickly morphed into "YOU'RE CRAZY!" Hmmmm ... "they" couldn't imagine doing what I do EVERY DAY without complaint so "I" must be crazy? Hmmmm ... strange logic that DOESN'T CHANGE MY LIFE ONE BIT.”

Later I cruised over to see Karen at The Rocking Pony and read her wail of frustration over Micah’s fears and unmet needs in his new school situation. Her questions regarding a change, a boost, a pull, or a surrender echoed through the halls of my life. I have walked that pathway, but not in her shoes. I’ve been given my own set of clogs to wear and a calling that rambles over some pretty scary cobbled streets and rutted roads. Road map? Where can I get one? Assurance that I will always choose correctly? Sorry, fresh out. My only comfort comes in firmly believing that God created Matthew to be just exactly what he is: smart, attractive, loving, tall, ravenously hungry ALL THE TIME, difficult to reach, eager to be loved, willing to try so hard, unable to succeed in every activity … and so the list goes. My son: Just like every other human being on this earth, unless you insert the label “autistic.” Then all sorts of images, ideas, and prejudgments bubble up and froth all over his unique beauty.

Prior to May 26, 2004 we also lived with cerebral palsy and a host of other “afflictions” that rendered Matthew’s twin, Andrew, incapable of caring for himself. Though incredibly bright, our dear son couldn’t speak with a voice (he had to settle for eyes) or eat from a spoon (tube, please), but he had hopes and dreams and frustrations and joys just like every other person rattling around in this cottage. How did we manage then with such a “burden”? Simple, our whole family pitched in and lived fully with those challenges. When I watched little Piper Palin smooth down baby Trig's hair with a wad of spit artfully applied to her palm, I let out a “Hoot!” Politics went right out the window as I watched that precious little tyke loving her little brother. She knew he needed some hair care and being “special” didn’t have anything to do with it. She stepped up to the challenge and smoothed away. Every single member of our family learned to supply a special talent or timely action in the miracle of living a daily life of love and beauty and splendor without having all the “right” pieces to play with.

The blogdom, the neighborhood, the family -- places I go to be myself. I’ve never isolated myself or my family from the world. Do I fear rejection? Judgment? Ridicule? Sorrow? OF COURSE, but having a disability floating around in our midst has no bearing on that whatsoever. Life hurts. Life shines. Reality involves boo-boos and bumps of all sorts, but if you stop and look you’ll notice the beauty of a rose, the poetry of a butterfly in flight, or the refreshment found in the dance of a weeping willow happening in the same moment as the painful jab. Trust me. You can choose which to grab onto for support. Personally I’ve always found the upside of clinging onto the garment of a great-big God and focusing on the “lovely” parts of life.

When Andrew and Matthew burst forth into the world of wires, tubes, monitors, and fears, Gary and I stopped in our tracks. Stunned! I can still recall Gary’s firm, unwavering voice when he asked the doctor bluntly, “What’s the next step? What can we do?” We never wondered, “Why us?” (Though many asked.) We never gave up and handed the reins to someone else. (Though many suggested it.) We did reach out to any and all that offered help. We enjoyed prayers, meals, babysitters, comforting shoulders, and so much more. We met some of the dearest, dearest people simply because we had a need and they had a need to give. Funny, some of those “angels” embed into your life and remain life-long friends; others complete the task and then vanish quickly (likely, moved along down the road to help another).

My greatest heartbreak cannot be found in the loss of dreams for my son, or the heavy burden of care, or even the sorrow of prematurely burying a child. The greatest sorrow lies in the stones and slurs cast my way from those who could not imagine walking in my shoes. The terse comment against my judgment, the veiled gasp at my course of action, the sneering taunt that my child contributes less somehow because he navigates a different trail – these things BREAK MY HEART.

We choose to live with autism, but we did not choose autism – it chose us. When God spun the delicate web of my son’s unique life He included a thread foreign to most, but intrinsic to Matthew’s blueprint. Andrew’s myriad difficulties facilitated different treatment but didn’t render him “different.” Each child that landed in my womb and proceeded to my arms contained something “special.” Once a very dear and well-meaning friend noted that “it takes a lot more love for those special ones.” I smiled at her lovingly and let her know that nothing could be further from the truth. Love cannot be measured that way; I don’t dole it out like discipline based on transgression or failure. Instead, it is enough to simply love without reserve or fear or shame or compensation. I love my boys. I love my girls. I love to love.

So, back to the rising temper, the threatened tantrum, the frustrated outburst – yeah, it happens. Yeah, he goes to his room to cool off (and I go to mine as well, sometimes). Yeah, it can be VERY embarrassing if this happens in the public eye. Yeah, I love him despite it all. You see, we have chosen to LIVE with autism in residence. It’s a bummer sometimes, but when my son comes to me, spreads out his big ol’ arms and gives me a two-armed hug and a kiss, I know no amount of spit or screaming could ever outweigh the love I feel for this man-boy and every other person in my life that loves me and lives right along side me in this messy, topsy-turvy world.

Many of you blogger buddies have crept into my heart and burrowed in right alongside the ones I call family. Thank you for your greetings and prayers and shared moments. I like to think if C. S. Lewis lived today I would be blogging with him and he would encourage me with the following truth: “We blog to know we are not alone.” As I travel over the miles of cyber space I find so many that slake my loneliness, share my travails, and make me laugh. We reach out in words and pics to know that we are not alone. To quote another amazing “friend”: “It’s a beautiful day in the neighborhood.” Thanks Fred Rogers -- creator of that first cyber neighborhood -- you nailed it.



imbeingheldhostage said...

Oh Debbie-- you touched me again. Your writing is beautiful and you have wisdom of angels (sorry, I'm not putting you on floating status, just acknowledging your gift of eloquence). What I really enjoy about blogging is learning that behind the pretty blog and the smiling or clever avatar, there are real people facing real challenges. Open, honest posts like these make the world a little closer, more intimate, more connected.

Kathryn said...

What an absolutely gorgeous post. Just beautiful. Thank you so much!

Becky said...

Spitting? Screeching? Door slamming? I am quite sure your Matthew fits right into our fold. Your entire family is welcome here anytime. Special needs or not your family is special. An inspiration to me on so many levels. I just can't help it, because of the love, wisdom, friendship, and generosity you have shown me and my family, you do float just a little in my eyes. Family in Christ we look forward to our next adventure together.

noble pig said...

This is the most lovely post on the internet I have ever read. Your family is the luckiest in the world, your beauty shines through.

Mim said...


Your blog writing and comments on others are so calming and serene.
Thanks for your gifts of sharing and now thanks for the story of your life and Matthew's picture and the loss of his brother.
I love your honesty.

Elizabeth said...

Thank you for giving me a glimpse into your life. Your writing is always a blessing to me, but as I wander through varying blogs sometimes I see all the good (the same way I usually write about few of the trials) You gave us a piece of yourself, and gave us a chance to get to know both of your sons in a small way- Thank You...

Flea said...

What a handsome son. Thank you for sharing more of your story. I've traveled backward through your posts looking for glimpses, as you've dropped hints about your family. It's so nice to read the history and reality of who you are, who God has shaped you to be. Your family sounds wonderful.

We homeschooled for a very long time. I know from my experience that it is not for every family at every time in life. The challenges - aside from the challenges of such wonderfully special children - are very real. But the bonding it creates in a family are fantastic.

I can see it in Karen and her children, looking at the pictures on her blog and reading her history. We both schooled our children the same length of time (9 years) and stopped at the same time (last school year). Micah is such an intelligent, sweet boy, so responsive in so many ways, probably because he was raised in that environment, amongst other things. But I understand why Karen sent her children to school, too. It's a tough place to be.

Thank you for being such an encouragement to so many.

Anonymous said...

Debbie, Debbie, Debbie,

What an amazing post! I'm almost at a loss for words. Almost.
I've realised that I don't spend enough time reading your posts, and I apologise for that. From reading this post, I realise that I need to read each word, at least twice and relish everything that you commit to the screen.
I love your sense of how you approach things - yes, living with autism and cerebral palsy can be a challenge (not that I know from experience), but it's great to see that everyone is treated the same - with the same love and attention that any human should be given. Everyone is special in their own way and should be treated like it. I love that sentiment. You are an amazing family, but then I suppose every family is amazing in its own way. We're all different, with different experiences, but we're all human - the best thing about being a human is other humans. But it can also be the worst thing too.
My sister works with people with disabilities (I hate that word) and what she does with her clients is amazing.

Blessings and best wishes to you and your family.

Take care,
Peter x

Laura ~Peach~ said...

beautiful post beautiful kids... The other week I had a young man who has some form of MR and possibly autism break away from his mother and brother come up and grab my arm ... I reached around to hug him and speak to him and his mother acted like I had committed a huge sin... I watched them later as we were checking out and this boy who,s name happens to be matthew (i know this because they were yelling it at him over and over) got this look of pure mischief on his face grined at me and took off across several isles to get away from his brother. I had to cover my mouth as I laughed because i felt in my bones he was having fun at their expense because of how shitty they were treating him (my opinion of course that they were being shitty) anyway Your love is clear and very evident and all kids will make you want to rip your hair out at some point I do believe but we still love them.
Have a wonderful Friday!
HUGSSS laura

Laura ~Peach~ said...

by the way I am a dork ya know... I was heading over to comment about your hubbys fish and got side tracked ... my fish eat the plants too but since we have let the elephant ears pretty much go crazy the fish seem to fill up more on those roots and don't destroy the lilys as badly... however they are grass carp technically vegetarians and I had a man tell me one time ... you have to choose fish or plants you can NOT have both... to him I say PFFT i have koi and gold fish together too and they are FINE they have been together 6 years ... I can have both and will LOL.
More hugs Laura

sukipoet said...

Amazing post Debbie. I too admire your honesty in sharing your story with your blogland friends. I send you and your family prayers and peaceful thoughts. Matthew is so handsome, with a sweetness in his eyes. May you all have a great weekend full of light and sun (well not toooo much sun). Blessings Suki

Britt-Arnhild in Norway said...

Dearest Debbie.

The place you have in my heart is growing for every time I come here, and today the first buds sprang out in fuul bloom.

Your words are beautiful, sad, raw, honest.....and alot more.

I don't have words to tell how much I appreciate your sharing.

I have mentioned the Birgitta Prayer several times in my blog: God, show me the way, and make me willing to walk it. Birgitta came from Vadstena in Sweden. I have just spent three days there walking the Birgitta Pilgrimage.

Julie said...

Thank you so much for this post, Debbie. Your faith, honesty and love were just what I needed to pick me up on a night when I wanted to be the one doing the screaming and spitting. You echoed so many of my own feelings in raising a child with special needs. I am so glad we met through Becky, and I hope we get to hug in person someday. Do you mind if I link to this post from my blog?

Theresa said...

Thank you for this lovely post. I think it's important to speak openly and honestly about this and related topics because many people feel like they are "the only one".

I've been enjoying catching up on your blog, but am not quite there yet. I am giving you a blog award - please see my blog!

Karen Deborah said...

Wow, this is the best. Is that really Matthew? He really is a man-cub! Loved this, and love you!

freddie said...

Thank you Karen
God bless you

MacCárthaigh Family said...

You hit the nail on the hear Heather...
It is food for thought.

Kathy said...

I love the way you write.
You and your family are precious, I look forward to your posts.