Parenting any child has its challenges, and there are lots
of things I used to get away with as a single person that simply don't fly now
that I have someone else to care for. Like anyone caring for a child,
parenting Zion, my son with special needs, has taken me to places within
myself—and in the world—that I never knew existed. Here are five things I have learned along the way.
I have learned that looking after myself is primary. I must
do all I can to stay healthy, happy and energetic. Why? My son has more energy
than six children. He resists sleeping and wants to play all the time. So since
his birth, I've made deep changes in every aspect of my lifestyle.
The most extreme choice I've made? I removed all processed
food and sugars out of my (and my family's) diet. The result for me has been
30 pounds of weight loss, more energy and a better all-around attitude.
Self-care also includes asking for help. I have friends who
spend time with my son while I write, attend a yoga class or spend an evening
with other moms. And I haven't given up my most important form of self-care,
which is nurturing my dream. I love writing, political activism, public
speaking and life-coaching other women.
When my son was born and I dedicated myself to helping him
fulfill his potential, I made myself the same promise. Fulfilling my own potential
is as necessary as my son reaching his.
I think one of the greatest gifts in parenting is our
intuition. I believe we all have that quiet voice or deep feeling within us
that guides and helps us as parents. For the first year of my son's life he
never passed a hearing test. Nearly every week I visited some kind of
specialist or therapist to have his hearing tested, but none of the tests were
conclusive. At home he was responding to sounds I could barely hear. He'd hear keys
at the door and sirens in the neighborhood. I felt he could hear.
My intuition told me to trust what I was experiencing at home.
After a year, an expert finally suggested a brain scan, which proved what I had
known all along: My son could hear perfectly.
Before Zion was born, I'd do my best to stay small and out
of the way. I never wanted to seem like too much trouble. The thought of people
thinking I was needy or demanding made me cringe. I learned quickly that this
behavior might be good enough for me as a single person, but when I became a
mom I would have to start asking and in fact sometimes scream, for what was
Zion's first pediatrician told me it was probable that he
would have many disabilities and a low IQ. He also suggested that he might get
leukemia. I couldn't believe my ears. As a frightened new mother, I was
appalled that a doctor would be so careless and insensitive. Rather than simply
believe him, I asked the doctor if he could hold his predictions for a time
when I was less scared and more familiar with my son.
As soon as I went home I began looking for a new doctor.
The same is true for public school and other agencies that
support our family. I often find myself being told by professionals what they
think is best for my son and what they can and can't do. I was taught not to
question authority, but I can tell you that every year Zion gets older I am
getting better and better at it. I am the person who spends nearly every moment
with him, and I have to believe that ultimately I can best decide what is right
for my son.
I have had to surrender my idea of what my child's life will
be and follow his lead. Having a child with special needs has given me
permission to follow his highest potential. I allow him to lead me to what he
desires and loves, and then I support him. For instance, my son learns best
through interactive play and discovery. I've watched him light up when
teachers, therapists and I engage him through play. He loves to discover new
things and usually remembers each of his discoveries.
The other day we visited a school that is being recommended
for kindergarten. My son's father and I watched as eight children sat in a
circle naming numbers, colors, days of the week and months from the board.
They didn't seem excited, engaged or involved. The teacher was giving
directions from another area in the room. Within seconds I knew this classroom
would not be a good fit for Zion. I left the room ready to ask for another
choice that I know will more gracefully and effectively serve my son's process.
I believe in Zion's ability to meet his potential. There is
no doubt in my mind that my son will have a wonderful, fulfilling life. As his
mother I feel it's my job to remind him of his worth and ability to
contribute his unique gifts to every environment he finds himself in.
My belief in my son has forced me to believe more in myself.
How can I possibly hold him to a standard I have not lived up to, myself? When
Zion was about 3 months old I watched him from a monitor as he attempted to
turn from his back to his belly. He tried 13 times before he was actually
successful. He never gave up or cried. That day I decided to believe in him and
his ability with greater strength than anything that a professional said about
I would not let Down Syndrome determine the value of his
life, but instead I would help him believe in himself and always give his best.
I look forward to the first time I tell him the story of watching him never
give up. I realized he had come to be my teacher.