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If you can imagine one of those desert movie scenes where the main character is all haggard-looking, stumbling in search of water, that is pretty much me. All. Summer. Long.
Towards the end of fifth grade, my boy’s anxiety seems to build ferociously, likely due to the anticipation of starting middle school this fall. “Easy” transitions are a rare phenomenon in the world of autism and this is going to be no joke. Plagued with the obsessive need to pick at the skin on his fingers and feet, my boy spends most of the summer pitifully trying to care for his self-inflicted wounds, smothering them with Vaseline, putting on Bandaids, lifting the Bandaids to see if everything is “okay” and replacing those that are about to fall-off. All day. Every day. Crying, whining, excessive fast-paced talking and pleading for reassurance. “I am so tired of suffering!” my boy laments. “I wish I could be in someone else’s body!” My boy suffers. Our family suffers.
This is not the first time along our 12-year journey that autism strips me of my calm composure, leaving my nerves raw and exposed. Angry and exhausted, I steal away to our bedroom closet, slump against the mirror and sob, cursing, and shaking my fist at God. Why are you allowing this to continue? Where are you?! I can’t take it anymore! The storm inside me subsides temporarily. I breathe. I ask God to pray for me because I am just too tired to think. I open the door, quietly descend the stairs and pick-up where we left-off.
Later in the summer, I glance at the dried-up stream bed beside the path I walk on a rare morning alone. That stream is just like my soul. All dried-up. I smile to myself as the Bible story comes to mind where Jesus tells the Samaritan woman sitting at the well that she needs to ask for Living Water. Water for the soul. “Give me Living Water,” I pray. And God offers me small drinks of water, just to get me through until the end of summer. Until I can breathe again.
An unsuspecting friend asks about my summer and before I can say much of anything, tears stream down my face and she puts her arms around me while I quietly let out a few sobs. “How can I help?” she asks. “Just do what you are doing, ” I tell her. “Sit here with me and listen.” She shares my pain. My mother-in-law spends time alone with my girl, allowing her to enjoy a few hours away from the tension in our household. My parents bravely take both my girl and boy for a weekend at their house on the farm while my husband and I enjoy a quiet house by ourselves.
These desert seasons have taught me that we are not meant to live life solely on our own strength. There are times when we have to admit our own thirst so that others can provide Living Water for us. Sometimes just enough to keep us going until we can reach a long stretch of fresh flowing water. For me, that life-giving stream comes in the form of a new school year. I will take this time to breathe in quiet. To listen and give my soul what it needs. And then with a quenched spirit, I will offer a cup of water to the next thirsty soul.
In my dream, I am trying to find my way home. I am walking. When I ask Siri for directions, she keeps changing routes and finally settles on the one right in front of me. I have to travel through a decaying urban area and climb the steep concrete wall of a dam. I’m scared, but I start climbing anyways. Higher. Higher. Higher. I near the top of the dam and notice water starting to leak through a crack in the wall. A flood gate has been opened. Cold water rushes out in big torrents and I am tossed about. As I fall downwards with the thundering water, I open my mouth every so often to get air and allow myself to be carried downward. Crashing into the churning water at the bottom of the dam, I rise-up, arms in victory, waving my phone around in the air. “I made it! I made It!” I yell. “I’ll show you just what I made it through because I caught it all on video!”
This was my dream the other night. And it is also my family’s reality as we travel with our boy on this journey with autism. The only way home is precipitous and hard and scary, at times. Our climb is fraught with rigid thinking, pervasive anxiety, intense sibling rivalry and hairy family dynamics. We never know when the dam is going to break and we’ll find ourselves sitting in an anxious, angry mess, wondering just what happened. And yet, we keep on climbing. We climb because we love each other. And we know that love surpasses any fear that threatens to thwart this journey that is ours to travel together. To keep climbing means that even when the flood wall opens and we find ourselves thrashing around at the base of the dam, once again, we are alive to tell about it.
While my particular “wall” happens to be autism, I have come to know so many beautiful souls who are climbing different walls. Just as scary. Just as hard or even harder. Cancer. Broken Marriages. Addiction. Chronic Illness. Abuse. Depression. Racism. We all have stories. Stories of a season(s) in our lives during which we discover our souls being hurled against a concrete bottom, weary and unsure of our ability to stand-up and start climbing again. Perhaps, if we can see ourselves as the heroine of our own stories, raising our arms in victory because we are still here to tell about it, we will be more likely to share our experiences with each other. We can replace fear and judgement with “Me, too.” and “Being human is hard. Let’s climb together.” We can conquer our fear with love.
My boy stands still in the middle of the kitchen with a little grin on his face and a faraway look in his eyes when my girl asks him what he is thinking about. “I was remembering what it felt like to canter yesterday,” he replies. My boy with the gentle soul also possesses a speedy streak. He loves to barrel down the driveway on his Green Machine and spin-out at the bottom and is known to be heavy-footed when driving his Grandma’s golf cart. Now, he has discovered the thrill of riding fast on a horse…
For a number of years now, my boy has taken to horseback riding as a form of exercise and therapy for his autism. For the most part, he has remained content with walking around the ring on his horse, slow trotting and doing a few very low jumps; however, after attending an inclusive horseback riding camp this summer, my boy got a taste of what it feels like to ride a bit more independently and fell in love with idea of competing in shows to win ribbons. “This is going to be my sport!” he declares boldly. “I want to learn more than what I am doing in therapy riding.”
So, naturally, when my boy with autism expresses a keen interest in something that is good for him in so many ways, I seek to figure-out a way to start the process of transitioning him to regular riding lessons. Someone willing to teach him lessons on the weekend (his energy is spent after a long day at school during the week), at a reasonable price, and, ideally, one-to-one. I mention my boy’s desire to Helen, the owner of the therapeutic riding center, and she jumps on it immediately, setting us up with one of the regular riding teachers at her barn, a young lady named Sophie with a soft, sweet spirit.
Several weeks later, we arrive for my boy’s very first “regular” lesson, a big milestone on his journey. He has the whole inside ring to himself and performs each and every request with great pride and confidence. Midway through the lesson, my boy’s horse unexpectedly goes into a canter with my boy hanging-on, mouth wide open. When they come to a stop and my boy realizes that he is okay, he excitedly shouts, “That was fun!” With great valor, he shares his cantering experience with friends and family in the days that follow.
All geared-up for his next lesson the next week, my boy is likely dreaming of flying across fields on his horse, just like the boy in one of his favorite movies, The Black Stallion. Only this time, my girl is joining him for his lesson. My boy and girl. When the going gets tough, they totally have each other’s back. At the same time, they are brother and sister and each possesses a healthy dose of competitiveness with the other. My girl participates in a variety of other sports and enjoys doing some riding when she is not in the midst of swim season or basketball season. It can be tricky when she rides with her brother, as riding just comes a bit more naturally to her, even though she does not ride as often.
You can imagine how devastated my boy feels when his younger sister is able to get her horse to canter and his horse refuses. He even tries switching horses with my girl, but still, he cannot get it to canter. By the end of the lesson, my boy leaves in tears, feeling totally defeated. Over the next week or so, he lugs this discouragement around with him, a heavy load, and it becomes the topic of many conversations. My boy wants to feel like this horse thing is all his. He wants to be special. He hates how autism makes some things harder for him. We talk a lot about how he is special just because of who he is, not what he accomplishes. And how there is enough “specialness” to go around for everyone. We talk about how, yes, it is discouraging to see others be “better” at things we want to be good at, but, that in life, there will always be people who can ride better, sing better, write better, etc. And sometimes, we have to be content with enjoying the journey while we learn the skills to become better. The important thing is that we persevere.
With these understandings, my boy returns to his lessons several weeks later with a renewed sense of calm and resolve. He listens patiently, when the instructor reminds him to keep “quiet hands” as he steers the horse. She breaks-down the process leading-up to cantering into bite-sized pieces so that he can digest the instructions more slowly. And when the time comes to try to canter, once again, my boy does as he is told and squeezes the the horse’s belly with his outside leg, but then he awkwardly pulls back on the reigns, confusing the horse, and stopping him from going into a full canter. With all his might, my boy holds himself together while Sophie soothingly explains what happened. “Just try to relax,” she says. “The horse senses your anxiety and knows that you’re not quite ready to do what you are wanting to do. If you can be patient and become strong on the little things, you will eventually reach your goal.”
I love how this instructor speaks truth to my boy. Even more so, I love how my boy internalizes her words and applies them to other areas of struggle as we drive home. “It’s just like math at school, Mom. I get all anxious about not knowing how to do something and then it makes things harder. But once I relax, I usually get it!”
I can learn a lesson or two from my boy. Sometimes, I get all inspired by these great visions of what I want to do with my art, my writing, my life in general, and I want to be there yesterday. Just like my boy, I start to feel discouraged that someone else is a lot further along the journey than me. I am learning, though, to pull myself back to Center and relax. To become strong in the little things. To trust the process. And one day, I too, will canter. When I am ready.
“I need to tell you a dream, Mommy. I dreamed that you and I were holding hands and we were flying. Not up to Heaven, just flying together. It was so beautiful, I didn’t want it to end!”
For those of you who are not familiar with my “Ben’s Dream” project, the inspiration for this piece of art came to me three years ago, when my boy slipped into bed beside me one morning and whispered of a dream where the two of us were holding hands, flying together. The image of flying with my boy over his signature houses touched my heart so deeply that I asked him to draw a picture of what it looked like and then set it aside for the right time. After several years of finding my own voice through art and allowing myself the space to grieve this autism journey that we have traveled together so far, I decided it was time, last summer, to make “Ben’s Dream” come alive on the canvas.
And so, began the “Ben’s Dream” project. The project that I have been documenting in a number posts over the past nine months and recently had the privilege of celebrating at the Children’s Museum of Richmond as a kick-off for Autism Awareness Month!
I have to say, I experienced a myriad of emotions throughout the creation of this piece. Grief. Fear. Hope. Frustration. Boredom. Acceptance. Excitement. Parts of it, near the end, really felt like a labor of love. Especially the days spent cutting-out layers of foam core in order to create the relief effect for the houses. At the same time, I sensed God urging me to carry-on. Bring this cycle to completion, my child. It will be worth it in the end! To witness the pride and joy on my boy’s face on Friday evening? It was oh, so worth it!
With no further ado, allow me to share a few scenes from our Night at the Museum.
An hour before the opening, my girl and I set-up a table filled with prints and magnets of “Ben’s Dream” along with several trays of “Hope” necklaces which I made using recycled puzzle pieces coated with resin, hearts punched from the scraps of Ben’s Dream, and crocheted glass beads. (A portion of the proceeds is now on its way to The Autism Society of Virginia!)
With the table all ready and time to spare, we made our way into the museum to find both my boy and husband playing in the Water Works area…My boy’s tie half dragging through the water and pants all splotched wet, I willed myself not to make a big deal out of it. There was a time, in my boy’s earlier days, when just the thought of splashing in water and riding a carousel would have sent him over the edge. Look at him now!
Before our friends arrived, I managed to take a few photos of my boy with the exhibit of his signature houses. Each of these houses was used, in the form of a print, within our collaborative piece, “Ben’s Dream.”
Among our very first visitors were these sweet friends (including my girl) from school. In the two hours to follow, the number of smiling faces walking through the doors to show their support left me both humbled and overjoyed! Grandparents. Aunts. Uncles. Old friends. New friends. Church friends. Babysitters. Teachers. Therapists. Each sharing their hearts with our family along our journey. Many asked for Ben’s signature on their prints, to which he happily obliged by neatly printing his name with a heart sweetly drawn beside it.
A wonderful surprise visitor arrived in the last hour. Miss Esther! The occupational therapist who taught our boy to hold a crayon and draw his very first house during his preschool years! We came full-circle that evening.
Our night at the museum was much more than an art exhibit. It was a celebration of how far we have traveled on this autism journey with our boy. A celebration of all those beautiful souls who have made a difference in our lives. May every family of these special children experience the joy of flying with them in their dreams!
Last year, I spelled out the word “Steward” with our Scrabble letters and set them upon my kitchen windowsill to guide my intentions throughout 2014. When I chose the word “steward” as my focus, I remember thinking that I really needed to be a better steward of my time at home, as I had lots of aspirations for my creative business, but often became derailed too easily. This was the year that I would not allow things like Facebook and internet surfing to steal precious time. I would set business hours and art hours and stick to them! I even bought Julie Morgenstern’s book, Time Management from the Inside Out, to give myself an added boost.
By mid-January; however, it did not take me long to realize that God had a different vision of what it meant for me to be a good steward of my time last year. The power struggles between my girl and me had reached an all-time high and I was failing miserably at being the calm, loving mom that she needed me to be. The anger I felt inside felt a little scary some days and I knew it was time to ask for help. My time this past year was meant to be spent in healing.
I spent a good 4-5 months working with a counselor, just healing my spirit. Allowing myself to grieve parts of my life journey, my boy’s autism diagnosis, and my girl’s unique struggles. As I released the trapped feelings from my brain, their physical grip on my heart loosened, as well. With a new found sense of calm, I was then able to move on to other aspects of our current situation that needed attention.
As a preschooler, my girl had been diagnosed with sensory processing difficulties, an anxiety disorder and ADHD. I often describe all these diagnosis as the “leftovers” of autism. While we sought interventions for my girl when these things first became apparent, the symptoms lessened over time and I guess I just pushed those very real struggles to the back of my mind, as we were still heavily in the throes of addressing my boy’s autism. That said, it was now time to better understand and address my girl’s needs.
So, my husband and I began meeting with a counselor together to hone our parenting skills. While we share a number of strengths in our marriage, we also made the realization that we needed to communicate and be more assertive about our own individual needs. We both felt like “martyrs” for our family, working somewhat independently to survive. Recognizing the importance of validating and supporting each other so that we can function better as a unit has been big for us. And, as you can guess, a happier, calmer Mom and Dad sets the tone for a more loving, peaceful household. Apart from our counseling, my girl is now receiving occupational therapy each week to address her sensory needs and we are in the process of completing some educational evaluations to see if there are any other areas that we might be missing. Lots of hard work going-on here!
As our family continues to heal and move forward together, I have decided that my word for this year is going to be “Trust.” Trust the process. Trust that life will reveal itself and unfold just as it supposed to. And while I keep dreaming and setting goals for myself, I will hold these things loosely, allowing God to gently guide my path. He’s got this. I just need to trust Him.
If you want to stay close to Me and do things My way, ask Me to show you the path forward moment by moment. Instead of dashing headlong toward your goal, let Me set the pace. Slow down, and enjoy the journey in My Presence. -Sarah Young, Jesus Calling
I while back, I left you with the beginning of Ben’s Dream. A process of expressing my emotions regarding this whole autism journey that Ben and I have been traveling together over the past 10 years. Following my intuition, I scrawled words across the canvas, brushed sad, angry, hopeful strokes over top of my words, printed, stenciled, and collaged my way through these beginning phases. Slowly, I started to see all of these marks begin to dance together in a sort of joyful, healing release.
With my ultimate goal being to capture a dream that my boy shared with me one morning several years ago, I knew that while that beginning phase would provide the underlying structure for this piece, Ben’s Dream, I would eventually need to paint over top of it in order to achieve a more unified background. So, after enjoying the first dance for a few weeks, I decided it was time to move-on to “phase II” of Ben’s Dream. I did not want to paint over all that richness. At the same time, I have come to trust the process and believed that the movement and emotion that lie beneath the next layers would emerge again, in its own time.
It was really hard to sit with a background that seemed “less than” at the time. I could hardly wait to add more layers in my next session!
Those hills and sky are dancing, once again…Soon, they will be singing with the final layers of Ben’s Dream! Here is a little peek of what will be going into those layers – Ben’s houses.
As I enter these final phases of Ben’s Dream I, too, am starting to dream along with him. How can I support my boy’s real life dreams? Perhaps his and mine might dance together…
My boy quietly slips into bed next to me one morning and snuggles-up close by my side. With tears in his eyes, he whispers in my ear, “I need to tell you about a dream that I had, Mommy…” As this sweet boy describes the scene in his dream, I can’t help but hold back my own tears. It is so beautiful!
That morning, I tucked my boy’s dream inside my heart and have carried it with me ever since, as it so aptly captures the autism journey that we have traveled together. Having faced the hard work of healing my own heart over the past year, I decided it is now time to make Ben’s dream come alive on the canvas. So, here begins the journey…
Facing a white canvas, with Ben’s vision in my head, I so badly want to get straight to the fun part where everything comes together; BUT, my soul really needs to wander. As I am learning so well, listening to my soul is always the best place to start.
I have one precious hour to work before picking-up my boy and girl from summer school. Just enough time to allow my soul to meander around the canvas with those simple painted words and brush strokes.
During the next session, I apply the working process learned from Kelly Rae Roberts’ online “Hello Soul!” mixed-media course. The rhythm of alternating between paint and collage is both relaxing and therapeutic for me. Just following my urges without worrying about an end product. Pure bliss!
When it is time to stop, I feel anxious about having to leave a particularly muddy area in it’s “ugly” state. Suddenly, I realize that my painting is right where it needs to be. Healing takes time! “It is okay to sit with your bruised heart. Give it time to heal.” I write those words right on my canvas with a black Sharpie and walk away for the day.
A few days later, I return to the canvas with more clarity. All those awkward, ugly marks? They are a part of my journey. In order to move forward, I must acknowledge the hard and the messy before I can turn them into something beautiful. Those colors. That texture. Those bits and pieces of collage. They are all learning to dance together now. In time, they will serve as the background for a lovely vision: Ben’s Dream.
“We all need to wear T-shirts that say, ‘Motley Crue'” says my husband jokingly as we head towards the Outer Banks of N.C. for our family’s annual beach trip. We are, indeed, a model of diversity and acceptance for those outside the “norm.” There is our own boy with his high-functioning autism and passion for maps, houses and presidents. Our girl with her ADHD, activity-seeking self. Our older niece with Aspergers (a form of autism) who embodies the mysterious side of vampires and wolves. And my niece’s boyfriend, also with Aspergers, who came along for the ride for the first-time this year.
I laughed, thinking of previous vacations and all the strange habits that our family has learned to contend with as a result of having children on the autism spectrum. There was the first-summer that we all decided to vacation together in the same beach house. My boy was scared to use the public bathrooms along the way, due to the loud toilets, so we strategically stopped at rest areas where he could go behind the trees unnoticed. I think it was that same year when our boy also insisted that we tie kitchen towels tightly around his head and on his wrists throughout the whole week at the beach. We have pictures of him wearing a red and white-striped kitchen towel tied around his head as he stood in front of the Cape Hatteras Lighthouse. I guess it satisfied some sensory need. He also hated the feeling of sand…I wondered if we would ever be able to enjoy the beach together. Suffice to say, our boy seems to have overcome the sensory difficulties with sand!
I am happy to say that while we are still a motley crew, we have come a long way since those first years of “vacation.” Aside from the innocuous sound of a cat-call whistle every-time we entered a new city and “Charge!” played from the back seat at every new county sign, our boy handled the 6-hour trip to the beach like a champ. (Thanks, Easter Bunny, for the sound machine!) Rest areas are now a non-issue and we have even expanded our repertoire of restaurants beyond Taco Bell along the way.
We were a bit worried that a rainy start to the week might be a challenge for our girl, who was chomping at the bit to feel the rush of the waves against her body. She likes to stay active and to be in charge. While my dad did report that both my boy and girl were “swinging from the rafters” at one point, our girl managed to channel her energy fairly well, teaching my sister how to play Skipbo, trying her best to encourage my niece and her boyfriend to join us in a round of “Freeze Dance” (I think they ran away to the screened-in porch.), and making sure that we did not miss any windows of dry weather to scamper alongside the surf. And, during our visit to the Cape Hatteras Lighthouse this year, our girl took the opportunity to dance in the rain!
Yes, vacation with our children can be challenging sometimes. “Lost” items and changes in routine can send us into a tailspin at the drop of a hat. At the same time, these loved ones encourage us to not only accept their eccentricities, but to embrace them. On one particular rainy day, our boy managed to get everyone in the family to write a ghost story and read it aloud. While the adults did actually write stories, others members chose to draw pictures of ghosts and vampires with bleeding mouths. And my girl, who supposedly could not think of a ghost story, wrote a sweet essay about how awesome her big brother is…I think she might have been trying to win some “brownie points,” but her words still touched my heart.
Later that week, when the dryer took forever to dry a load of clothes, our boy reveled in the opportunity to help his Mamaw devise a special vacuum attachment in order to vacuum the load of sand built-up in the dryer vent. His fervor for vacuuming also came in quite handy when it was time to clean the beach house at the end of the week.
At times, I do notice other families leisurely hanging-out on the beach all day reading books, playing paddle ball, surfing in the waves. No apparent oddities or special accommodations to be made. I wonder how it must feel. But then I also know that we all have our own back stories. Stories of disappointment and unexpected challenges. Each one is just as messy, real, and beautiful as mine.
A motley crew? Yes. Loved and accepted? Yes. Thank you, God, for allowing me to see all that is pure, lovely and true. Especially amidst our motley crew.
Summer arrived here in a rather loud fashion last month, bringing the raw energy that comes with the end-of-the school year, daily trips to the pool for swim practice, and the usual first few weeks of anxious adjustment to new rhythms. After years of pushing through the difficult transitions that accompany my boy and his autism, you’d think I would be used to this reality, but I still find myself feeling blind-sided each year. That said, we all survived those first few weeks of discord and even managed to create a few fond memories along the way!
My girl would live in the water all summer long if she could. And it seemed like we ALL lived at the pool for the first 6-weeks during swim team season! I often call Emma “My Little Mermaid.” When I ask her what she likes best about swimming, she declares that she “loves the way it feels to glide through the water!” I have to say, Emma really does look beautiful gliding through that water and I admire the perseverance that she demonstrates in trying to become a better swimmer.
On any given Monday night, my husband or I could be found poolside, fulfilling our volunteer duties with a timer in our hands.
And, Ben did his best to be patient and entertain himself with lots of snacks and good fact books. He was an especially good sport when rain drenched his bag of books at the end of the very last swim meet. Especially the notebook of President facts that he compiled over the past several months…
I usually try to plan a few craft projects for us to work-on together throughout each summer. The clay was actually Emma’s idea. My block of clay had become dry after sitting for too long, unused, so after wrapping it in a moist towel for a day or so, I was happy to see Ben and Emma enjoy making a few things with it, even if their projects ended-up cracking and landed in the trash later.
I plucked this stick-weaving idea off of Pinterest earlier this summer. Ben and Emma were really into collecting “v-shaped” sticks on our nature walk the morning I told them about this project. I had planned on the project taking place over a few days, but they could not wait to get started…
I love Ben’s focus here!
Ben and Emma insisted on carrying this humongous branch back with us that morning…Now, over a month later, it looks like I am the only one interested in finishing the weaving. A new piece of art for their tree fort!
Amidst the swimming and crafting, Ben participated in a Friendship Skills group. His final homework assignment was to arrange and carry-out a play date (with a little help on my end). By the huge grin on his face, I think you can tell it was a success! My heart fills with joy when I see Ben enjoying the company of his peers…For so long, he only felt safe talking and playing with teenagers and adults.
Lina and Emma have remained best friends since their first days of preschool. This summer marked the first-time that Lina spent the night at our house. These girls are quite the entrepreneurs! They love to make stands to sell just about anything. Tap water. Junk from Emma’s drawers. And this time around, lemonade.
Thanks to our good-spirited neighbors and few passersby, the girls made-out pretty well!
Not one to sit idle, Emma also delights in entertaining us with her many shows. Awkward gymnastics routines. Silly-nonsense plays with Ben. Here, she is holding a puppet show featuring an “Emma” puppet and theater (decorated as a swimming pool, of course) that she made in summer art camp.
And, Ben entertained us with his “Worm Circus!”
For obvious reasons, my art production slows-down quite a bit during the summer. I did make it downtown recently, though, to see a few of my earlier creations displayed at the Suntrust gallery in Richmond.
This week, I started on a new piece called “Ben’s Dream.” I am loving using the collage and paint combination to create the background! You can expect to see the beginning of this process in a future post, after my family and I return from our annual pilgrimage to the Outer Banks next week. May we all continue to notice and savor the special memories unique to our summers.
The Blue Mug 
