You are either attaching to your thoughts or inquiring.  There is no other choice. –Byron Katie, Loving What Is

Definitions: Unified Spirit-God’s voice of oneness in this world. Ego-Our false sense of self

We cannot begin to know the Unified Spirit’s plan for our children.  We do not know what spiritual lessons are for them.  However, we often feel the need to blame someone or something for our child’s difficulties.  We blame others and the professionals blame us.  We want to say, look it is not my fault, it is my child’s brain, or my child hangs out with the wrong set of kids, or he is allergic to something that triggered the bizarre behavior, or it is the vaccine, or she was born with addictive behavior, or he inherited the tendency to emotional instability.  We want to be able to say to people, look I am innocent, I did not cause this, and someone or something else did.  I am not to blame.  Or, we make it worse by blaming ourselves, which prevents us from seeing our child’s wholeness of spirit.

When we accept society’s labels for our children, we seek to place our blame outside of us.  Or, we accept responsibility, but turn our blame inward and judge ourselves.  If I am going to get stuck, this is where—judging myself, not forgiving myself.  And when this happens, I know I have totally succumbed to the ego’s thought system of guilt and attack.  When I am in this dark place, it feels even more difficult to get out.  And the ego is really clever, because I will tell myself I know better, look at all the spiritual work I have done, how could I possibly be this unforgiving?  How do we get out of the shame and blame game?  How do we get out of the ego’s grip?  You give yourself the gift of a question.  You cannot change your child; you can only change your mind about your child.  Remember your relationship with your child is holy ground and holy ground is risky ground.  It can feel scary to look within and confront our fears and drop judgments to embrace the divine in each of us.

When you are in that place of fear and feeling stuck or upset with your child or with any event in your life, give yourself the gift of a question.  Two spiritual teachers, Byron Katie and Barry (Bears) Neil Kaufman have developed a series of questions to help us understand and then release our fears.  This inquiry work aids in uncovering beliefs that are thoughts attached to emotions, which keep us unhappy and fearful.  We can re-write our story about our children from one of sadness and struggle to one of joy and peace, but first we must look at the limiting beliefs that cause us to stay stuck in the sadness and struggle.

A wise [parent] knows:

There is no good child and no bad child.

There is only this child.

–Vimala McClure, The Tao of Motherhood

When professionals provide a diagnosis for a child a label is applied.  Unfortunately the label often becomes much more important than the child.   My child is autistic, dyslexic, bipolar, cognitively limited, physically impaired, ADD, or any label becomes the focus instead of the child. Then we expect children to behave based on what the label implies.  It can become a self fulfilling prophecy. I can hear children silently screaming or behaving in ways that imply, “This is not who I am.  My label does not define me.  Won’t someone please see me for who I am?  I am so much more.”  A wise adult knows a child is not their label. “There is only this child.”

After one of the sermons I gave last October, a man came up to me crying.  He said that he hardly ever cried, but the message in my sermon was a transforming experience for him.  He related that he had an 18 year old son who had struggled with behavioral problems all his life.  For eighteen years the father said that he had only focused on what was wrong with his son, never on his son’s gifts and strengths.  It never occurred to him to look past the diagnoses and behavior and embrace the truth of his son, to see his divine spirit.  I say over and over again in my speaking engagements that we do not have to like a child’s behavior in order to embrace a child.  When we can say to our children, “I see you, not the behavior, not the condition or the label; I see the truth of you” this is when healing begins.

In most parenting workshops and books about children with special-needs labels, time is spent on the idea that parents must mourn the loss of the child they thought they were going to get in order to appreciate the child they did get.  It is a constant challenge to take what life gives us and find meaning.  A well-known story by Emily Pearl Kingsley describes what it is like for parents when they discover their child has a disability.  Imagine you have planned a trip to Italy.  You have learned the language and the culture, and you are excited about being in Italy.  But when you finally arrive and get off the plane, you realize that you have landed in Holland instead.  Now you have to plan differently, learn a whole new language, get to know a whole new set of people with different customs and ways of being, and you also have to give up on your dream of being in Italy.[i] But as Kingsley writes, “if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely, things about Holland.”[ii]

Another way to lessen the grip of mourning for the child you hoped for and expected to have is to see the world through your child’s eyes.  The grief may feel real but it has nothing to do with the child. Too often when we label a child with a disability we follow by saying I wish my child did not have autism, Down syndrome, dyslexia, attention deficit disorder, bipolar disorder, or whatever is your child’s label.  What parents are actually saying is they wish their child did not exist and they had a different “normal” child. Imagine what this conveys to your child and how s/he feels.  Loving your child unconditionally means loving all parts of your child, the stuff you do not understand that makes you uncomfortable as well as the good stuff.  We do not want to get sucked into the shame and blame game; however, children’s behavior changes when they are accepted for who they are.

People within the autism spectrum have been around long enough for the adults to now write about and express what it is like to grow up with autism and they have much wisdom to impart, which is applicable to all the different labels we give children. Jim Sinclair, an adult with autism writes, “You didn’t lose a child to autism.  You lost a child because the child you waited for never came into existence.  That isn’t the fault of the autistic child who does exist, and it shouldn’t be our burden.  We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived.  Grieve if you must, for your own lost dreams.  But don’t mourn us. We are alive.  We are real, and we’re here waiting for you.”[iii] “There is only this child.”

[ii] Emily Pearl Kingsley, “Welcome to Holland,” www.geocities.com/Heartland/Ridge/9672/holland.html

[iii] Jim Sinclair, Don’t Mourn for Us (Syracuse, NY: Autism Network International Newsletter, Our Voice, Vol. 1 #3, 1993)

Recently I was reflecting on the several jobs I have had working with children which took me out of my comfort zone, that challenge my beliefs and caused me to grow without any effort on my part.  And when I reflect back it was the few connections I made with a struggling child that stay with me.

One summer during college I worked as a day care attendant for Children’s Hospital in Tulsa Oklahoma. I usually worked with the four and five year olds.  These were children who had been taken from their parents because of neglect and abuse.  I remember one four year old boy who was terrified of being touched and would never cry because his father had told him it was for sissies.  I remember watching helpless as he screamed abuse at himself for crying after falling and screamed louder in terror when I tried to comfort him. This was contrasted with another little boy who constantly needed comfort from hugs.
My first job out of college was working in an institution for mentally retarded children and adults.  This was before the consent decree in Massachusetts which meant this institution was little more than a warehouse.  I was hired primarily to work as an attendant for a very large young woman who could become angry quickly and had been known to pick up her care attendants and throw them.  I was desperate for work and so even though I was scared to death, I took the job.  The job soon evolved into more.  We were the only program trying to normalize the living experience for some of the children.  We would take these mostly nonverbal teenagers on trips outside the institution and also tried teaching them to sign when they needed something.  What we did was a drop in the bucket to what needed to be done.  And periodically I would spend time with the young woman I was hired to be with and I would play with her or wash her hair or take her swimming.  To everyone’s amazement she never once gave me any trouble.
After graduate school, I took a job as director of an after school and summer camp program for kids living in the inner city of Chelsea and Revere in Massachusetts. This was part of a larger agency also working in Malden. The day I was hired the entire staff quit in protest saying that I was not qualified for the job.  The Executive Director had hired me to clean up what he thought was an ineffective program lacking in structure.  And so on my first day of work I had fifty kids running wild and tearing up the building as they had been used to doing.  I hired anyone who would work on a temporary basis including friends until I could hire a full time staff and bring some structure to the program.  It was not easy.  Many of the children had experienced abuse, one girl had watched her father murdered, one young man gave meaning to the phrase bouncing off walls.  Yet gradually I began making connections and for every child who was too aggressive for us to handle there were others who thrived.
During my time with all three of these jobs, I was constantly scared and constantly feeling inadequate to the task of providing what the children needed.  I constantly had to reassess my beliefs about how to work with children who struggled not only with what life had thrown at them but also with professionals in institutions who seemed clueless as how to respond.  Looking back on all of this I am amazed that I did not become discouraged, that I still wanted to work with and for children who struggled.
With the years comes some wisdom. I realize that being out of my comfort zone provided some of the most intense periods of growth and understanding.  Perhaps it was the connections I made with a few individual children that matter the most.  Perhaps it was the willingness to see past the behavior to recognize that these children were much more than their behavior implied.  Perhaps it was the individual connections which made the difference: from the little boy screaming in the bathroom who would not let me touch him but needed my presence, to the little boy who I sought out each day to hug and to love, to the young woman so angry at being in the institution who appreciated my washing her hair and playing whatever game she wanted. There was a boy in the after school program who had been repeatedly burned by his mother and constantly bounced off walls who I joined in tearing apart my office.  He stopped stunned and wanted to know what I was doing.  From then on we developed a close relationship based on trust.  Perhaps that is all any of us need do, just once and awhile make a connection with a struggling child; make a connection that says I see you, I honor you, you are a child of God.

It is a year of endings for me.  I finished my book and I am waiting for it to be published. I created a multimedia M2eBook to publicize my upcoming book.  I am waiting to market this M2eBook till September which will hopefully bring in some personal consultations.  I cancelled a conference and will be closing my nonprofit organization, The Creative Soul of Children.  My funding from the Unitarian Universalist Association was cancelled due to their budget crisis. This means no money to help subsidize my Involve workshops for churches, so there is only one scheduled so far.
My son has one more year of college.  I am in my last year living in Winchester before Rick and I move to New Mexico.  I am clearing out lots and lots of junk accumulated from living in the same house for thirty years.  We are doing some final repairs and renovation before we put the house on the market.  It is finally looking like I have always wanted it to look and then we will leave.  My support circle of friends is here and Rick’s family.  There will be a lot of goodbyes.

With so much of my professional work ending, I am left without at story of myself.  It is disconcerting.  I suddenly have lots of free time.  I find myself feeling like I did when my daughter went to college, bereft of my daily parenting story –panicky and unable to move forward.

We like our stories of being a parent, a professional, a sibling, a daughter or son.  Our stories keep us feeling special which reinforces our feelings of individuality and thus separate from others. When one of those stories changes, fear enters because we do not know who we will be without our story.  But God does not need our stories.  God knows we are in truth extensions of his/her love.  Our reality is love, not the stories we create to keep us separate from God.

The challenge for me during this transition is to let the peace of the eternal moment replace my fear of being without a current professional story.  The challenge is to refrain from finding another story to fill up what I perceive as empty space leading to panic. Books, TV, music, movies, and fantasies of a different life can easily fill the space so I do not have to look at my fears of nothingness. We have created a world filled with endless distractions.  We can always find a way to drown out the still small voice within, the voice of our higher self our connection to God. Instead that empty space can be filled with my awareness of being at one with God.  It comes and goes.

Stripping away our stories removes the blocks to loves awareness. I have moments of clarity that I have been blessed with this opportunity to practice being without a story.   But it can be scary, because deep within the unconscious I fear it will lead to oblivion.  I know it is my false sense of self which fears.  So I turn it over to the Unified Spirit, God’s voice of oneness in this world.  And I do this over and over again till I regain the deep peace within of God’s eternal love.