Walk in My Shoes

A Walk in My Shoes

C. Waeltermann, 2007

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don't understand
The pleasure he gets
Just from flapping his hands

"He needs discipline," they say
"Just a well-needed smack,
You must learn to parent..."
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it's like
To live with the spectrum
The struggles and triumphs
Achievements, regressions….

But what they don't know
And what they don't see
Is the joy that we feel
Over simplicity

He said "hello"
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he's ten,
He stopped saying the same thing
Again and again!

Others don't realize
Just how we can cope
How we bravely we hang on
At the end of our rope

But what they don't see
Is the joy we can't hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste

But what they don't know
Nor sometimes do we
Is that children with autism
Bring simplicity

We don't get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don't get it
Or can't get a clue
Take a walk in my shoes
And I'll assure you…

That even 10 minutes
Into the walk
You'll look at me
With the respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you
That you won't say a thing
You'll be quiet and learn,
Like the years that I did
When the tables were turned.

Holland Schmolland

Holland Schmolland By Laura Krueger Crawford If you have a child with autism, which I do, and if you troll the Internet for information, which I have done, you will come across a certain inspirational analogy. It goes like this: Imagine that you are planning a trip to Italy. You read all the latest travel books, you consult with friends about what to pack, and you develop an elaborate itinerary for your glorious trip. The day arrives. You board the plane and settle in with your in-flight magazine, dreaming of trattorias, gondola rides and gelato. However, when the plane lands you discover, much to your surprise, you are not in Italy -- you are in Holland. You are greatly dismayed at this abrupt and unexpected change in plans. You rant and rave to the travel agency, but it does no good. You are stuck. After a while, you tire of fighting and begin to look at what Holland has to offer. You notice the beautiful tulips, the kindly people in wooden shoes, the French fries and mayonnaise, and you think, "This isn't exactly what I planned, but it's not so bad. It's just different." Having a child with autism is supposed to be like this -- not any worse than having a typical child -- just different. When I read that, my son was almost three, completely non-verbal and was hitting me over a hundred times a day. While I appreciated the intention of the story, I couldn't help but think, "Are they kidding? We are not in some peaceful countryside dotted with windmills. We are in a country under siege -- dodging bombs, trying to board overloaded helicopters, bribing officials -- all the while thinking, "What happened to our beautiful life?" That was 5 years ago. My son is now 8 and though we have come to accept that he will always have autism, we no longer feel like citizens of a battle torn nation. With the help of countless dedicated therapists and teachers, biological interventions, and an enormously supportive family, my son has become a fun-loving, affectionate boy with many endearing qualities and skills. In the process we've created… well… our own country, with its own unique traditions and customs. It's not a war zone, but it's still not Holland. Let's call it Schmolland. In Schmolland, it is perfectly customary to lick walls, rub cold pieces of metal across your mouth and line up all your toys end to end. You can show affection by giving a "pointy chin." A "pointy chin" is when you act like you are going to hug someone and just when you are really close, you jam your chin into the other person's shoulder. For the person giving the "pointy chin" this feels really good, for the receiver not so much – but you get used to it. For citizens of Schmolland, it is quite normal to repeat lines from videos to express emotion. If you are sad, you can look downcast and say "Oh Pongo." When mad or anxious, you might shout, "Snow can't stop me!" or "Duchess, kittens, come on!" Sometimes, "And now our feature presentation" says it all. In Schmolland, there's not a lot to do, so our citizens find amusement wherever they can. Bouncing on the couch for hours, methodically pulling feathers out of down pillows, and laughing hysterically in bed at 4:00am, are all traditional Schmutch pastimes. The hard part about living in our country is dealing with people from other countries. We try to assimilate ourselves and mimic their customs, but we aren't always successful. It's perfectly understandable that an 8-year-old boy from Schmolland would steal a train from a toddler at the Thomas the Tank Engine Train Table at Barnes and Noble. But this is clearly not understandable or acceptable in other countries, and so we must drag our 8 year old out of the store kicking and screaming while all the customers look on with stark, pitying stares. But we ignore these looks and focus on the exit sign because we are a proud people. Where we live, it is not surprising when an 8-year-old boy reaches for the fleshy part of a woman's upper torso and says, "Do we touch boodoo?" We simply say, "No we don't touch boodoo" and go on about our business. It's a bit more startling in other countries, however, and can cause all sorts of cross-cultural misunderstandings. And, though most foreigners can get a drop of water on their pants and still carry on, this is intolerable to certain citizens in Schmolland who insist that the pants must come off no matter where they are, and regardless of whether another pair of pants are present. Other families who are affected by autism are familiar and comforting to us, yet are still separate entities. Together we make up a federation of countries, kind of like Scandinavia. Like a person from Denmark talking with a person from Norway, (or in our case someone from Schmenmark talking with someone from Schmorway), we share enough similarities in our language and customs to understand each other, but conversations inevitably highlight the diversity of our traditions. "Oh your child is a runner? Mine won't go to the bathroom without asking permission." "My child eats paper. Yesterday he ate a whole video box." "My daughter only eats 4 foods, all of them white." "My son wants to blow on everyone." "My son can't stand to hear the word no. We can't use any negatives at all in our house." "We finally had to lock up the VCR because my son was obsessed with the rewind button." There is one thing we all agree on: we are a growing population. 10 years ago, 1 in 10,000 children had autism. Today the rate is approximately 1 in 76. Something is dreadfully wrong. Though the causes of the increase are still being hotly debated, a number of parents and professionals believe genetic pre-disposition has collided with too many environment insults -- toxins, chemicals, anti-biotics, vaccines -- to create immunological chaos in the nervous systems of developing children. One medical journalist speculated that these children are like the proverbial "canary in the coal mine" here to alert us to the growing dangers in our environment. While this is certainly not a view shared by all in the autism community, it feels true to me. I hope that researchers discover the magic bullet we all so desperately crave. And I will never stop investigating new treatments and therapies that might help my son. But more and more my priorities are shifting from what "could be" to "what is." I look around at this country my family has created, with all its unique customs, and it feels like home. For us, any time spent "nation-building" is time well spent.

2007 Christmas Letter

Dear Family and Friends, As the holiday season approaches, we have been reflecting on the various highs and lows of this past year. We are deeply grateful to all of you that have kept us in your thoughts and prayers. We thought we would take a moment to update you on Gabriel’s development. 2007 has been a year full of exciting progress as Gabe reaches new milestones. As most of you know, Gabe is attending PPCD (Preschool Program for Children with Disabilities) through our school district. He loves his classroom, teachers, and classmates. This is a truly phenomenal program that provides speech therapy, occupational therapy, physical therapy, music therapy, and adaptive PE (as well as much more)! Gabe thrives in this fun, active, and highly structured environment. Since beginning this program, Gabe has become more social and has shown more interest in other children his age. He is responding to and interacting with his classmates more and more each day. It’s heart-warming to see them together and hear other parents (of children in the same class) state that their children call Gabe their friend. As a mother of a child with Autism, this is one of the greatest things I could ever hear! Gabe has worked very hard this year and made progress in his language and speech skills. In addition to the services Gabe receives through the school district, we are also doing private speech therapy, occupational therapy, and an in-home ABA program. We see that each of these interventions is helping Gabe. The exceptionally supportive and dedicated teachers and therapists that work with our son both at school as well as in our home continuously renew our hope and give us much to be thankful for. Our new private speech therapist has truly been an answer to a prayer. She has really connected with Gabe and has been able to spark more language in the few weeks since she has started than we have ever heard from him before! He has even recently said several three word sentences! Each new word is celebrated and fills us with renewed hope that he will be able to communicate his wants and needs to us in the future. As for now, we still often resort to tears and frustration as our little boy tries to communicate to us how he feels and what he needs. However, it’s heartening to know that we have a great team of teachers and therapists that see the potential in Gabe and realize how much knowledge Gabe has stored inside. We are all determined to help him find ways of expressing his knowledge. For the first time since Gabe lost certain skills, he is now calling us “Daddy” and “Ma-Ma!” Personally, this is the most meaningful achievement this year. My heart feels as if it’s about to burst each time I hear him call for me! Another significant moment of 2007 was when I received my first spontaneous kiss from my sweet boy! Many of you heard about this momentous occasion due to my uncontainable excitement! In November, I attended the National Autism Association conference in Atlanta, Georgia. I traveled with five other moms of children with Autism. These women are very special to me and play a vital role in my support system. The conference was an amazing experience. Some of the best minds in the autism world spoke at this conference. The primary focus was on the biomedical treatments available. We are currently seeing a local doctor that specializes in treating Autism biomedically. We have just begun this particular intervention and are hoping to see some positive results as we treat nutritional deficiencies, build up his immune system, remove toxins from his body, and help Gabe become healthy so that he can benefit to the greatest extent possible from the various other therapies and interventions we are implementing. We hope that this biomedical approach will also help decrease some of the intense anxiety that Gabe currently experiences. He is terrified of certain sounds, places, and even of something as simple as watching a DVD. We are trying to understand why the sudden increase in anxiety and are also working closely with our therapists in developing ways to help him overcome some of these irrational fears. In this season of giving, I am reminded of just how much I am given each day by my special boy. He rewards my hard work and frustration with a smile that lights up a room, a warm, tight hug that refuels my depleted energy level, and exciting new words that are the most beautiful music to my ears. Gabe is a gift from God as every good and perfect gift is from above. He is also a beautiful reminder of God's promise to us all in Jeremiah 29:11. As we reflect on this past year, we realize ours is a journey of peaks and valleys and we are learning to better adjust to the fact that our best days will be followed by inevitable periods of heart-break and discouragement. Some days my only and best comfort is the reassurance that God is with us. He celebrates with us on the mountaintops of success and shares our tears as we struggle to find our way through the valleys of depression. I honestly do not know what we would do without the love and support of our family and friends. You all mean so much to us and we are grateful for your love and friendship. Life with Gabe makes it difficult to pick up the phone and call as often as we would like, but please know that we think of each of you often. We wish you all a very Merry Christmas and a blessed, happy, and healthy New Year! With Love, Staci, Bruno, and Gabriel