Warrior Mothers

Sunday is Mother's Day, I always dread reading all the cards, trying to find one that shares the message of my heart and more. This year, I have decided to fore go the "perfect" card and share these stories of the mothers of my life, who have shaped and defined me as a mother.

I would not be a "warrior mother" without the influence of many amazing women. The most amazing of all, my mom. My mom is the kind of person everyone likes. She is kind, sweet and rarely says anything unkind about someone. She is quick to turn the other cheek and is my example of treating others the way you want to be treated. She anchored me in my faith, gave me room to grow into my own person and catches me when I fall. My mother never gave up, and she gave us all she had to give. I continue to be amazed at how she managed us all and how she continues to be full of quiet strength. I want to be like her when I grow up; less likely to be emotional, more likely to be a strong shield. She is my confidant, hero, role model and friend. If you know me and love me, you must know that my mother is of great character.

Though my mother has shaped the mother I have become, others have colored the canvas. My grandma, who grows weaker each time I see her, is another example of strong faith and value. She always had a way of making me feel important. My childhood was filled with colorful experiences with my her. She showed me the world and knew much about Gods creatures that filled it. Simple things made her happy. She grew up recycling long before the first Earth Day or Al Gore's global warming. If momma was the coffee, grandma was definitely the sugar and cream. She made difficult things a bit more bearable, and memories with her are colored with the giggles and awe of a younger me.

Now, through tear filled eyes. I remember my beloved Mimi; whom I never remember seeing drive a car (though I am told that she knew how). Mimi shaped much of my early childhood, a time of innocence and joy. Mimi knew that making triangle shaped white cheese toasties would make a day special. She would always make time to chat with me on the phone, and while I have little memory of what words filled those conversations, I know she was happy to sit and listen. Her legacy, I think, is resilience. The power to continue to see a better day is coming and to embrace the blessings of each day. These are so much a part of who I am, years ago I wouldn't have dreamed how I would need them.

My grandma Anders came into my life when I was a teen and whispered great words of wisdom: "go now and experience life while you are young with no responsibility". Grandma was an example of grace and joy. I will always be grateful for the love she gave me.

Aunt Judy who also found ways to make me feel loved and special. (And still does). Aunt Judy is the example of the aunt I am certain each of my sisters and I all aspire to be like for our nieces and nephews. My darling Aunt Kathy, whom I miss greatly and regret so much not telling more often when I could how much I loved her back. She always, always made me feel like I belonged to (and with) her. She would joke how much we were alike. Aunt Kathy showed me unconditional, unquestioning love. And Aunt Peg, how you demonstrated devotion inspired me. My aunt Peg has the grace of my grandma, and an amazing spirit that is an example of faith to me. Each of us is given a path to walk with God, and Aunt Peg is my example of keeping the faith; finding God in everyday life.

My mother in law, Barb, who reminds me-without knowing-that someday, I will give trust a piece of my heart to another women. Being a mom to boys who will one day cleave unto another. I reflect often on what I hope for my sons and am grateful for the gift of your son.

One last momma, I couldn't leave out, Kathy. You were a role model for me in a way to this day, you probably do not understand. You renewed my faith in family at a time in my life when I wasn't convinced. You made me a part of your family and to this day I know I am loved. Thank you for modeling patience and love for me; for helping me appreciate "picking my battles". Thank you for choosing to include me in your life.

From each of these, I form the "warrior mother" me, striving to treat others kindly, to be resilient and taking time to appreciate the small things. A mother who tries to make my conversations count, who knows when not to sweat the small things. I try to find the ordinary miracles of the day and work to share the love and faith that makes this time on earth mean more. As this Mother's Day approaches, I am grateful for these examples and hopeful that each of them sees a piece of themselves in the mother I am today.

Out of the darkness

I've contemplated enough; I've come to this conclusion: Ten years ago, the 31 year old me was terrified at the future and determined to "fix" my son. [I was certain it was something we could easily handle and clung to the "high functioning" label many had placed on my sweet son]. Here's the thing I didn't know: autism didn't literally take away my son. In fact, we've managed delightfully in spite of it.

So, this is what I have to say to that younger, determined, "warrior-mother" me:

You will cry tears of joy as you watch your son hop on a two wheeler and proceed to ride it down the street.
You will be amazed at what a loving and protective big brother your firstborn becomes.
You will cheer with the rest of the crowd as your son runs the bases in T-ball.
You will become a voice for others, sometimes not knowingly.
You will laugh when your son uses "damn" appropriately; then desperately try to figure out when he heard you or his dad use that word. (Only to discover weeks later that he heard it while watching a Teenage Mutant Ninja Turtle movie).
You will choke back tears as you watch him perform with his peers in a music program.
You will find joy in watching your son mimic others.
You will inspire others and become a role model.
You will be speechless that suddenly, almost overnight, your son knows all the letters of the alphbet and corresponding sounds.
You will laugh in the face of the "autism gods" many times over.
You will face the future, tentatively and bravely.
You will rejoice in the miracle of 2-word phrases, then 4-words, then sentences with too many words to count.
You will come to know the "window" for learning does NOT close at 7.
You will conquer the movie theatre trauma.
You will cheer with many others at his homerun in the ball park.
You will know gratitude and humbleness to a depth you cannot imagine.
You will learn how much your son has to teach others.
You will find blessings in the darkness.
You will be able to breathe.
Somehow, someway, you will find the strength within you to be a mother to an incredible son that God gifted you with.
You will be grateful for all that he is, and sometimes for all that he isn't.

Into the light, I see the other side.

Why does this still surprise me?

We are coming into our second decade of living with autism.
The second decade--that gives me pause.

Ten years ago, I had no idea that this could continue to be so heartbreaking; such a struggle. I wasn't prepared for the roller coaster ride that would become my future. In retrospect, that makes sense; I absolutely did not have the strength then to endure or process the extent to which autism would play a part of our lives. If you read this often, you know that I try to see the blessings that fill my life because of my son.

I rarely go to the dark side. The side that leaves a festering wound that refuses to heal, like a scab I obsessively pick. This is one of those moments, I can't help myself or find my way out of the darkness. A time when I feel suffocated by how autism has robbed me of my son. How it has stolen his childhood and taken many things from my family that I have no way of getting back. How it has the power to define his future and limit his opportunities.

Autism has been on our family vacations, is part of church every Sunday, at weddings, birthdays and Christmas's. Autism is the black shadow that looms and without question is not to be ignored. It so greatly defines our being that even our typical child has suffered residual effects. Parts of his childhood are colored by the dark shadows.

A decade of living with autism.

As I wander through this darkness there are glimpses of light. Muted grays mixed within the black. The reminders that this journey has not been with out purpose; our lives are colored with unusual joy. Happiness in the little things; "ordinary miracles." A rainbow in the storm: his pure heart and genuine laughter.

The only assurance of the coming decade is this: autism will be a part of our family. The autism shadow will continue to cloud our experiences. My weapon against the darkness is prayer and attitude. Prayer pierces the darkness with light; turns the canvas of life from black and white to brilliant colors. In the next decade my son will remain a child of God, full of purpose and light. I will cling to the Lord as my guide into His light. And continue to pierce the darkness with light.

Time Capsule

Once upon a time, I was an overzealous expectant mom with a grand idea: a time capsule. We were so overjoyed to finally be pregnant; allowing ourselves to dream about this life we created. So, in the final trimester of my pregnancy I decided to make a time capsule for our beloved baby. We sent out letters to friends and family all over the country with a survey of sorts and imagined when we would open the coveted envelopes. One friend suggested when he graduated high school, another maybe when he was studying his family tree as a 10 year old. We never really settled on a time for sure; I decided I would know when the time was right; when those words would mean the most to him.

I stumbled across the box today, filled with baby outfits, his hospital hat and a pin from Northside Hospital announcing "I'm a Dad". The box also holds his first boy scouts derby car, a paint stained t-shirt from his first experience with finger paints, a beanie baby and newspapers from the day he was born. (He was born on a Sunday, so the papers are thick!) Seeing all the memorabilia put my heart in my throat for a moment. Made me reflect for a moment on all that we lost...

I'm trying not to stay in that moment, praying that truly I will know the right time to open those envelopes. The time when it will be most meaningful to my special son. There is a seed of hope inside me that believes there will be a time, in my lifetime, he will understand how special those letters are. And then, this journey will be in its own time capsule, a memory from another time when autism colored so much of our life. In the end, there is always hope.

World Autism Awareness

1 in 110
I wish those were my odds to win the lottery...I can't see that statistic now and not know the significant meaning behind it. 1 in 110 children are on the autism spectrum. Last Sunday's Parade Magazine featured the headline: "Autism's Lost Generation". It's sobering, haunting, and depressing to consider what's been lost to autism. I generally try to find the good in it; see the positive side of the hand dealt to my son. The joy he often has in his heart is genuine, pure. So, in honor of autism awareness, this is what I want you to know about autism (and my son):

*Autism robs my son of the ability to express his ideas and emotions clearly; but that doesn't mean he doesn't hear or comprehend.

*Without words, my son speaks clearly to those who are open to his world.

*Though socially challenged, he wants friends and yearns to belong as much as any other kid his age.

*Extreme sounds, sights, smells and sensations can be overwhelming to him. He was probably 9 before he could tolerate a movie theatre; 11 before he could "enjoy" fireworks. He is able to work through his sensitivity to some things, but others will always be an issue.

*We take nothing for granted. Every part of our lives is pre-planned; there is always a back up plan.

*Autism is expensive, period. It just is.

*Jackson is intiutive; he can sense people who are "on his side" and steers clear of those who are not.

*We choose to have him participate with his peers as often as possible. Our motto is "set him up for success." We expose him to as much as possible and refuse to let autism limit his experiences.

*Understand that people with autism (especially children with autism) look normal. Looks can be deceiving.

*Jackson is a creature of habit. Routine is comforting to him; change triggers anxiety.

*We celebrate the little things: haircuts, bike rides, sunflower seeds, "joint attention".

*Never underestimate his ability to problem solve. This kid has spent 13 years figuring out how to communicate his needs. Ask yourself how you would communicate in China? Further imagine you didn't even know how to use non-verbal clues or gestures to communicate.

*Breakthroughs can come when we least expect them and he tends to progress in spurts. If he's struggling academically he may be making strides socially (and vice versa).

*Please, please know that we have tried many, many "cures". Diet, check. Sonrise, check. Speech therapy, check. VB, check. TEACCH, check. Vitamin therapy, check. The list continues. Chasing the "cure" is emotionally exhausting. We're doing everything in our power to improve his quality of life; we just no longer exhaust ourselves with every new therapy.

*We love him fiercely, in a raw and sometimes painful way. He loves us purely, the only way he knows how.

Inclusion & Ramblings...

I have been doing research on autism and inclusion--the pro's and con's if you will. There is so much information out there, and so many opinions. I honestly think one could make a strong case either way citing "experts". At the end of the day, I'm left trying to sort through it all and decide what is best for my son. I have to speak for him, unfortunately he doesn't have the words. Well, that's not true, actually he does say he wants to "stay with my friends"; he has no interest in a "new school".

Alas, next comes the unnerving thought, what else would he say if he could? Is he aware of his social plight? Does he wish for something different? Would he prefer to be educated with "similar" peers? How different would that look for him? How hard would it be? Would it be too easy? Would he miss his friends?

I am forced to face my greatest fear: REGRESSION. In the end, that is the great unknown; the black hole of my existence. What if he just stops moving forward? What if he ALWAYS loves Sesame Street stuffed animals? I think I can live with that...That is not the black hole--the dark place where regression lives is a place where he loses his place in my world and reverts into his own. Regression is a disconnect, a loss one does not easily recover from. Regression is the rug pulled out from underneath us, and the worst part is not knowing what may cause it. I think I have a clue about some things that might cause a regression: a huge change in routine, setting or schedule could send a typcial person over the edge. Jackson isn't at all typical. Take him away from everything and everyone he knows and it's like a "perfect regression storm".

REALITY is now. Reality is, "Mom, come here" and "Cal jump with me" or "Hey dad". Reality is the notes he writes us in church asking to go to "Toysrs" or to tell dad to draw "big brd o hrd" [big bird goes on a hayride]. This reality isn't one I could have hoped for even 3 years ago. I try to remind myself of that as I ponder the next 3 years. How much will he change and grow? What does HE want for his future? How capable is any 13 year old of explicit future planning? Most of them I know are vague at best regarding future plans: I want to go to college, I want to make a lot of money, I want to drive a nice car. Jackson wants to go to "mickey mouse's house". [I am smiling as I type that one].

At the end of the day, I put my head on my pillow and pray. Pray that God will guide me to His awesome plan for my son's life. Pray that I will see His hand in it all; pray for insight and peace. Pray for a sense of direction and to listen to His will, and the strength to accept it.

Reflecting

I am thinking about Jackson's upcoming annual case conference. (For those of you with typical children who are deprived this privilege, a case conference is when you meet with teachers and administrators to plan for your child's education for the upcoming school year). I always get a little anxious about these meetings; like I'm waiting for the ax to fall. It's not easy hearing how academically challenged your child is; it's especially difficult to read it in black and white.
So, this year, I am preempting those feelings with my own list of all the gains my son has made this year. I will need these accomplishments to temper the weight of the world as I contemplate how far he has to go. With that, in no particular order, are the accomplishments he has managed since the fall:

*He is making attempts to read words. There is evidence that he is checking through words and using phonics to sound out unknown words.
*He has an increased interested in art. He will draw illustrations and talk about what he's drawn. His drawings are becoming more sophisticated.
*Jackson is using print in a meaningful way. He has intentionally written me notes to make his point even greater. He will record things on the calendar and has even at times, added words to his illustrations.
*Finally, my son is able to match one to one when counting. This skills is helping him to have an understanding of other basic math concepts: addition, more, less.
*Socially, he continues to laugh in the face of the autism gods. In the fall, at a sectional football game, he wandered off from our family, and when I caught up to him and asked him where he was going, he answered, "to my friends". My heart stopped then, as I watched him and his friends "hang out" at the game for the rest of that quarter. At the next sectional game, he asked again to go find his friends.
*This year, he went on a big birthday party celebration and actually rode all night long in the limo without mom. He was calm, and enjoyed being with his friends.
*That initial excursion led to another independent event: going to the circus with a group of friends.
*He routinely greets his friends and their parents at church (with out prompting). He is ever aware of where his friends are.
*He clearly demonstrated his awareness of the wants of others when changing the music in the car to something his friends would enjoy.
*He asks about going to do things with his friends, and will talk about times he's shared with his friends, "You went to Lazer tag with Jhai and Trevor and Seth"
*He initiates activites with family members. He'll call, "Cal come here" or "Mom sit here."
*Jackson follows directives easily. This is exciting, there was a time when he didn't understand a simple command like: "Put the plate in the sink" Now he can follow more complex commands "Take the clothes out of the washer, put them in the dryer and press start." or "Go to the kitchen and get mom a coke"
*He's more vocal in general. I'm often greeted with a "Hey mom" and surprised when he asks about or announces something.
*Amazingly, he has adapted to having seven periods in the day, and adjusted to seven teachers. I record this, because it too, is an accomplishment in its own right.

These are the accomplishments that come to me right now. Absolutely to be celebrated, without question they aren't taken for granted. I am proud of all my son has become and anxious for his future to unfold more triumphs.