We have reached the top of a very long mountain. Years and years of climbing a steep slope, stumbling over boulders, paving new trails though thick terrain, and now we have arrived. More weary than I can describe and sadly, very much defeated. And quite honestly the view is anything but beautiful.
You see, here we are in the final weeks of public education. Seventeen long years of IEP meetings and advocating. Years and years of trials. The reality is the efforts that a team of people have made over the span of her education cannot overtake Autism. It cannot overtake an Intellectual Disability.
Despite all of the tears shed, meetings attended, moments of begging, fervent advocating and insisting on vocational programming versus academics since 7th grade, she was withdrew from the Division of Vocational Rehabilitation Program today because she does not have enough job skills to seek paid (supported) employment. This means that she will have to find meaning in volunteer work or adult day programming.
As a mom, this mean a giant let-down and an enormous fail. It means that while I paved new trails, they lead to nothing. I scrambled over boulders simply to be met with the face of disability. It means that no matter how hard I tried, or she tried, the reality is the reality. It means that our system sucks. It means that in order for her to have meaningful work, she must show an interest in working while facing the core challenges of the disability, and that appears to not be happening. It means a painful reality check of the future.
It means Autism wins. At least today.
I see in my mind a meadow. A vast and glorious meadow filled with a lifetime of flowers. Each flower represents a memory in my life.
As I wander down the worn path through the meadow, I marvel at the sizes and shapes of the expression of my life in floral form. In the distance I see the flowers of my childhood; first bike, my best friend, love from my grandmother. I see the flowers of my young adult and the time when I became a mom. Bright and vibrant flowers that cover the endless space of my mind.
Within the beautiful meadow of my life there is also things that have grown that attempt to choke out the flowers–weeds of self-doubt and judgement. I am taking the time to clean up my space, tug at the things that do not belong and make room for new flowers to emerge.
New memories and new blossoms.
Through a Yoga client who lives with MS, I was led to an artist who teaches art classes called ‘Painting for the Soul’. In this class the students are led onto the blank canvas using their own internal courage and whisperings to create what is seeking to be expressed. Some techniques are given but really the experience is to explore both the process of painting as well as what is lurking inside the painters unspoken soul.
What began with “wandering” some yellow onto the stark white canvas, then layers upon layers of colors, and finally a calling for a bird, I created a painting that will tell countless stories each time I look at it. For me, the layers and layers of color are significant to the depth of my soul and the layers that I have yet to reveal. The glory and excitement of painting such an amazing end-product cannot be overshadowed by the courage and trust that I experienced in the process. Trust of myself and courage to ‘mess up’ and keep creating.
The meaning of the Raven symbol signifies that danger has passed and that good luck would follow. According to Native American legends and myths of some tribes the Raven played a part in their Creation myth. The raven escaped from the darkness of the cosmos and became the bringer of light to the world. The raven is associated with the creation myth because it brought light where there was only darkness. The raven is also believed to be a messenger of the spirit world. It is believed that ravens who fly high toward the heavens take prayers from the people to the spirit world and, in turn, bring back messages from the spiritual realm.
They say that conversations in the car are always the best with your kids. Somehow depth can be more easily reached when there is the distractions of the world whizzing by. There is an ease in which the topics and exchanges flow.
Without hesitation, she blurted that a guy at her day program thinks she is cute and wants to be her boyfriend. Oh boy. I smiled and mumbled something nice about it. Meanwhile in my mind flashes of images kept coming. I could heard her voice talking about him and even moving on to other topics, but my mind still lost in a movie of images.
I saw her holding a boy’s hand. I saw her dating. I saw her wanting to be in a relationship. I saw myself struggling to explain to her things I cannot even being to explain to myself about her genetic anomaly. I felt the heartache of realizing that she may in fact understand, and ultimately feel, loss about her body. I knew with conviction that she has every right to be loved and to love. I saw her in a supported living environment with other adults with cognitive disabilities. I saw her heart get broken.
I pushed this all aside. I could not bear to talk about this to anyone. I needed to process this and look within. I knew for sure that I was stuck within a world of fear and a world of allowing every opportunity for her to feel whole. I realized that I desperately wanted her to remain my girl–the one who collects coloring books and loves cartoons.
Just as our life in public school is coming to an end and the relief from years and years of advocacy comes to a close, another door is cracking open and beyond it is much bigger and much scarier. The threshold to this doorway is terrifying.
Many years ago I was told that she had plateaued. I was told that certain skills can be developed within the scope of her IQ but that she was likely to stay in the same area of ‘development’.
Imagine my surprise when within the last three months she has learned to pony tail her hair, found a fondness for handsome movie stars like Brad Pitt, and has decided her wedding dress will be leopard print. In fact, her entire wedding will be animal theme, “minus the flowers of course”.
I have cycled back within the reality, and sometimes the grief, that the developmental delay is exactly that. A delay in development. So her childlike abilities and interests are slowly emerging into a pre-teen area of inquiries. Being that she is nearly twenty-one years old it makes me wonder what other new skills and interests are about to breakthrough. I often ask myself what she may be like in her 30’s, 40’s and so on.
It is not like her living skills have emerged, but rather her interests and her awareness. Yet, the executive functioning of everyday tasks remain–and likely will always remain–delayed if not non-existent. While this is all exciting and sometimes incredibly entertaining, it is also a reminder.
While she is having breakthroughs in development, I find myself between celebration and sadness.
Catching a peek at her iPad, I saw that she had googled how babies are born. It felt like a punch in my stomach. Is she attempting to process that she cannot have children? Will she be able to ever express her feeling around that? How do I support her in this grief process?
Observing her with her constant stack of coloring books and knowing she is curious about bigger picture things, I see she is within two worlds. One she is comfortable in and one she is interested in.
I have found that the last several weeks I have had an undercurrent of anxiety, agitation, and uncertainty. While I am aware of these feelings, I have found that my actions and my words have been not only feeding that energy but have caused me to really look inward to my own
shit opportunity to grow.
During these few weeks I have been looking at my ego and my own responsibility in the my response to the actions of others. Going back and forth within my own story I found myself used gossip and repeating of the “story” as a way to cope with my personalized feelings of discontent.
I became lost within the story. I was experiencing life from a place I do not ever want to–victim and blame. I was struggling internally with being valued and being seen. I was expecting others to behave a way that truly is none of my business. I was putting a stamp of personalization on my experiences.
Today I woke up with words repeating in my head: ‘shine on and ‘live from the space of love, always’. Choose to get out the story. Choose to love. Choose to own what is yours and move on, with love. Always with love.
That is truth. Shine on.
While it has not always been easy, I have come to believe that the special qualities of my girl require no more inquiries as to why. I know that for some, looking for a cause or a place to put blame soothes their aching heart. For me, I know for certain that I do not blame immunizations for my daughter’s development delay and autism. I also do not blame myself for signing the form to allow the nurse to give them to her, nor do I blame the doctor for educating me on the value of immunizations.
Instead, I blame the developmental delay and the autism.
I blame autism and developmental delays on learning how to live in the present moment. I blame autism on showing me what it means to live without an ego. I blame developmental delays on teaching me how to celebrate the simplicity of watching her learn how to do her own pony tail at age 20. I blame both for reminding me that I have no control, and that is perfectly fine. I blame autism and developmental delays on cracking open my heart with compassion.
You see, had she been born typical–or developed typical–or whatever side of the fence you stand on, I would not have been nudged through the rich experiences that have nurtured my soul.
It was my girl who held the door for me, and without words said, “Come along Mom, this is why you are here”. I blame autism and developmental delays for that.
It is the most rewarding moment as a momma to get heart-felt messages from your young adults. Both my boys gave me the greatest gift ever—to be appreciated and to be seen.
From the oldest:
Mama, What a wild year of 43 it was for you. I have seen so much personal growth in you this last year, through struggles, frustration, change, independence, and self-love. I am so happy to see you happy and content with yourself in life, as I feel this is the first time in a long time you have truly felt that way. It has taught me to love every little thing I have in life too, and appreciate the moment, live for it, because it doesn’t stick around forever. Quitting a job you were obviously much better than and overqualified for, to pursue your passion, your dream, has turned into your DESTINY. and my Oh my, what a beautiful thing it is to watch. Thank you for teaching me to appreciate life and the passions I have, and to live for the present. I owe you my life mother, I love you. Happy happy birthday.
From the youngest:
Love and appreciate you more than you could ever imagine. Flowers and a card is nothing to show you how much I appreciate you. You have made me into the young adult I have aspired to be. I am glad NOT that I chose you….but that YOU chose me.
My girl came into the kitchen this morning and leaned into me. She handed me a hand drawn sketch of a cat (I think) and asked when we were leaving to go get coffee. :) I know she loves me because she tells random people about my life and my birthday.
It is so awesome to be a momma.
Discover–to find (something or someone) unexpectedly or in the course of a search. Find, locate, come across/upon, stumble on, chance on, light on, bring to light, uncover, unearth, turn up, track down.
In my quiet space of meditation the word that came to me for 2015 is discover. I love more than anything to open myself up to what next layer needs to be unpeeled. I work to have no outcome or expectation, but instead to simply just be in the space of whatever comes. It is my soul’s purpose to remember what I already know that I have lost through years of conditioning and limiting beliefs. I am here and I am so ready.
Already this year I have discovered a need for more laughter in my life. Belly aching laughter that brings a sense of wellbeing and happiness. Laughter that is authentic. Laughter that comes from the heart. I have also discovered that in cultivating laughter I am opening myself up to also bring friendships into my life. I also believe that laughter will continue to bring out the little girl in me that has been emerging.
My prayer for this year, and most days, is to open me up and use me in ways that bring out the best in others and in myself. May I be the light and may I always see each day as having purpose. May I continue to be grateful for all that is.