'Feelings come and go like clouds in a windy sky.
Conscious breathing is my anchor'
Thich Nhat Hanh
Dear Ones-
(I love this way of addressing people, Maya Angelou used it and so does writer
Elizabeth Gilbert. It is gentle and kind and reminds me what a gift I am)
Being a child of alcoholism and abuse and the oldest child; ready to fix it all,
sometimes can give me just the strength I need to face any situation and other times
cripple me with self-doubt and a feeling of not belonging. Oscillating between the
two emotions is maddening. I desire so desperately for approval and to be “in” and I
am always left with “out.” Then my pride kicks in, I get frustrated and don’t care. I
say to myself, “these people don’t know me. They don’t know my life or my kids.
They don’t know how far we have all come.” When life is distilled to it’s simplest; I
have a f-ing fantastic life! It could be so much worse. When I stay in this space of
pure gratitude and happiness due to the blessings that have been bestowed, life is
awesome.
Being the ASD child's only connection to the social world; the one that calms all their
meltdowns; the one that teaches social manners relentlessly, despite a public
tantrum; the one that is constantly stretching, shaping, and pulling them into
uncomfortable areas with the hope of some normalcy in adulthood, is exhausting.
Over the past eight years, it has taken a toll on my nerves, on my marriage, on my
friendships and on my sanity. I suppose some parents of “typical” children will say,
“that is what all parents are supposed to do these days.” I can tell you with certainty
that is not what my parents did. We were accessories of marriage to be shown off at
dinner parties and grocery stores; but my parents never studied “parenting.” They
never worried about anxiety in us kids or had any idea about sensory overstimulating
children. These are real issues for my kids and when I developed an understanding
of the steps I could take to help them, then they began to start looking and behaving
like “typical” kids. Don’t get me wrong, they still have these issues, I am just better at
making them look “normal.” The other drawback to that is that more often the people
I come across or develop relationships with don’t consider my children “special
needs.” Right, they don’t walk with walkers or get around in wheel chairs and I am
grateful for it. They are however on medication for anxiety. Most parents when they
find this out think I must have some form of Munchausen. I must be one of those
crazy “helicopter” moms creating more problems than there really are. People don’t
know that Hudson did not speak, they did not see the thousands of hours and dollars
on Speech, OT, Social Skills, and Play Therapy and just plain Therapy. They weren’t
in the room when my child made multiple wishes for death. I grew up in a not so
great situation and you never heard me say that? These kids are not the norm.
They are more than that, they are complex and amazing!
So, I guess what I am trying to say is I try to be truly balanced. On the side, I started
a support group with another special needs mom to share experience, gain strength
and hear some hope in this mental health battle. The overwhelming topic that
parents in our group keep returning to is caregiver burnout. Moms and Dad’s are
putting such unreal expectations on themselves, trying to do it all, and never taking a
break. I put my kids first certainly. There is no other way. I am their “person,” but
during those particularly “melty” days I let them “plug-in” (no judgement) and I drink a
cup of tea and write. When they are safe at school, I say NO to volunteering 3 days
a week and I run. There is nothing more freeing for me than putting fun, upbeat
music on and slogging my frustrations out on the pavement. I garden and meditate
to be as centered, rested and rejuvenated as possible, so I can handle the after
school meltdowns with ease and grace. I think I came to the conclusion that the only
validation and strokes I need are the ones I give myself. I am awesome and so are
you.
As my Aunt always says to me, “May the force be with you.”
Jen
Bio: Jennifer Levy is a former kindergarten teacher in Los Angeles who moved to
Salt Lake City in 2006 after having her first child. In 2013 he was diagnosed with
Asperger’s and Anxiety. Her second child came quickly after in 2007 and was
diagnosed with Autism in 2010. She is the Co-Founder of Utah Easy to Love Parent
Support Group 501 (c) 3, which holds two parent meetings monthly, as well as, family
activities for the special needs community. She is also a runner, writer, gardener and
an artist (in all her spare time :)
This is a great article in the New York Times that ironically addresses many of the
health benefits of meditation and breathing for the stressed out caregiver.
http://mobile.nytimes.com/2014/07/29/health/when-the-caregivers-need-healing.html
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