We did it

The train rolled into the station and the girl proudly stepped off.  In her 17 years of public education as a special needs student she taught others more than she learned and I know for sure made a difference in the lives of many. Additionally, what we learned and accomplished will go into the records books of the dynamic duo of advocacy.

The first time I learned what an IEP was and the services that I resisted out of pure ignorance and ego (like the”little bus”) ended up in a long process of discovering not only what special education is, but the grit in which I dug deep into my Self.  Yea, Grit with a capital G.

What the girl accomplished in her tenure as a special education student include:

  • Exceeded the expectations of someone with a tested 51 full-scale IQ
  • Taught others what tolerance is
  • Looked into the eye of anxiety in order to grow
  • Made allies with some teachers and others she offered a dose of reality
  • Went to prom, managed a basketball team, took dance classes and dissected a cat
  • Learned valuable job skills
  • Became an advocate for herself

What I accomplished:

  • Learned that it is okay be the squeaky wheel
  • Asked for what was right over and over
  • Waited patiently for what was right to be delivered
  • Listened to my inner advocate and acted on it
  • Learned that wanting people to like me was far less important that insisting on the right action
  • Let go of my own made up stories about how things should be
  • Embraced what is

At the end of this era, I am incredibly grateful for the gift that is my girl.  Not only did she hold the door open for me to discover my true purpose, she taught me what it means to never give up, to fight for what is right, and to believe in myself.

Onto the next train.

Arriving at the station

Many many years ago I sat in a conference room with a team of educators and professionals and began my long journey down the road called ‘Special Education’.  At that time, this was a path that I knew nothing about and honestly I did not want to be on.  I remember being devastated that she would be riding a little bus to school.  Devastated.  Interesting, I was not devastated that she was identified as a preschooler with a disability. My stuff I know. Over the years I attended these annual meetings–sometimes with advocates or attorneys–but mostly solo.  Sometimes I attended them happily, and sometimes I attended them with volatile emotions. Year after year we reviewed her deficits, her areas of growth, and created goals to work on.

By the time middle school came I was adamant that her programming needed change to a more vocational track, which in our incredibly academic and high achieving school district, was an enormous battle. Our final meeting was held to discuss supports that have helped her over her public education career, what her strengths and needs are, and how prepared she is to exit. I sat in complete awe of the amazing young woman sitting next to me.  Her full-scale IQ tests at a mere 51, but her skills are far, far beyond what anyone may have ever thought possible. As she described the things that worked for her–extra time, a peer partner, written instructions, to be shown how to do the task, and access to help–I listened to her advocate for herself and be openly honest with who she is. At one point, she turned to me and signaled a high-five and said, “Go team-Lindsey”.  That statement was better than any ‘I love you’ or ‘thank you’ she may ever say to me..

Watching her and listening to her made it all completely worth it.

And so, we have arrived at the end of the path or how I felt more recently, the train has arrived at the station.  Before we catch the next train, my girl and I are going to celebrate all that we have seen and accomplished while on board this one knowing the next one awaits.

Autism Wins (today)

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.

My Meadow

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.

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First Raven

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.

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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.

Terrifying

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.

Breaking Through

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.

Shine On

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.

Enough.

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.