The Parent Shift: raising an autistic child – my journey to my better self

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I believe much of my misery was rooted in my perceived inability to make thoughtful, empowered and meaningful choices in my life—choices about my thoughts, my attitude, my perspective, and my behavior.

By Emily Grey Berman

The Vision

I always wanted to be a mother. I had this vision of raising a bunch of kids with my amazing husband; sharing adventures, camping, taking road trips, going to music festivals, enjoying game nights, and simply sharing everything I loved. I wouldn’t care what my kids did when they grew up. All that mattered to me was that they would be happy and independent. I pictured each of my children to be a better version of myself. It wasn’t until a few years ago I realized I was the one who had to become the better version of myself.

When my son was eleven months old, I discovered I was pregnant with a girl. She was going to be my little sidekick, the one I molded to become an independent woman. She was the child who would give her brother the true sibling experience I wanted him to have.

The Descent

From the start, Leah was a very fussy baby who hardly slept and cried almost all the time. The only time I recall her being calm was when I nursed her. I remember early on, my husband commented that Leah would not look at him. I wasn’t worried, and thought nothing of his comments until much later.

At the age of six months, when we attempted to feed Leah rice cereal mixed with breast milk, she gagged and pushed the food away with her tongue. For the next six months, we attempted to feed her different types of baby food, but she would gag, vomit, scream, cry, and push it away. I felt something was off, but our pediatrician was not yet concerned. I had a decade-long career as a special education teacher prior to having children, so I knew how to access resources. When Leah turned one she began occupational therapy for feeding. She finally began to crawl at an age where many kids are starting to walk. I don’t believe I was consciously in denial about Leah’s delays. Despite my training with school-age children, it was honestly not even on my radar I would have a child with developmental delays or any kind of special needs.

This changed over the next several months, as each day brought new struggles. Feeding Leah became a desperate daily act, and occupational therapy wasn’t helping. She completely stopped responding to her name, all eye contact ceased, and she stopped saying the few words she did have. My concerns and intuition were confirmed when the first of many developmental experts came to our home to evaluate Leah and diagnosed her with significant developmental delays. Meanwhile, I was already pregnant with my third child, a girl. Despite my professional training and experience, I was unprepared for what was to come. I began to have a constant sinking feeling from my throat to the pit of my stomach. I had worked with many children with Autism, but the youngest were already five years old, so I had no idea what Autism looked like in a baby or toddler. I went online and spent many nights frantically researching early childhood Autism. It suddenly struck me.

My daughter was Autistic.

The Bottom

As abruptly as I realized Leah had Autism, I collapsed into devastation and grief. The only other time I had experienced this depth of grief and heartache, was when my younger brother died in a tragic accident several years earlier. For months I cried all the time, I stopped socializing. I was nauseous and couldn’t sleep.

After Leah was formally diagnosed, my home no longer felt like my own. A variety of therapists, supervisors, trainees, and social workers visited our home almost daily. We needed help. She needed help, and it took several years to adjust to constantly having outside people in my space. Thankfully, many of these outside people became part of our strongest support system.

Leah’s behaviors continued to get worse. A typical day involved hours and hours of her screaming, crying, gagging, and injuring herself. She became extremely sensitive to soft objects, and would vomit at the sight of a stuffed animal, blanket or carpet. I felt helpless. I was unable to provide her comfort, like I could for my other children, and that broke my heart. The only way I could get her to eat, was to push her in the stroller and stop every so often to coax a single bite of baby food into her. Because she was calmer in motion, we used to drive her around for hours a day.

I was in a dark, heavy, seemingly impossible place, in which I truly believed it would be easier to grieve the loss of her, than to raise her. I had tremendous guilt around these thoughts. I was a peaceful, loving, warmhearted, earth mama; yet, I actually felt contempt towards my daughter. She was miserable, and miserable to be around, and was ruining the life I always dreamed for my family. I would literally wake up in the morning with my heart pounding. At times, the anxiety manifested into panic attacks. I dreaded every day. Even when I wasn’t with Leah, I was miserable. From that desperate place, I finally got to the point where I realized I could not change my daughter, so I had to work on myself. I began to seek outward so that I could heal inward.

The Rebirth

As I started my journey into healing and rebirth, from mother, to mother of a child with special needs, I attended a meditation class for parents. One insight  the leader shared was that our kids are our zen masters. Something clicked for me in that moment. Leah was my zen master. She woke me up when I started to become unconscious. She reminded me  as I faced her massive behaviors and challenges, I needed to stay present, conscious, and calm. As a result, I began a practice where the louder and more severe her behaviors became, the calmer and more quiet I became. I stayed present to support her, but no longer reacted or mirrored her. I learned to wait. Those rough moments always passed. Even if it took more than an hour, it would pass, and I would get maybe ten minutes of relief before the next rough wave began. Again, it would pass. I learned to surrender to what was, and to let go of the circumstances which I could not control. I began mindfulness meditation therapy, and started a daily meditation practice. I joined a couple of different sister circles, and found comfort with my “tribe.”

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I wish I could name the one magical thing that helped me finally get to the point where I could get back on track and live the life I always knew I deserved—one that was happy and fulfilled. When I reflect back on how I got to a place of desperation and suffering, I believe much of my misery was rooted in my perceived inability to make thoughtful, empowered and meaningful choices in my life—choices about my thoughts, my attitude, my perspective, and my behavior. It wasn’t easy, but I’ve become more conscious of my ability and freedom to make choices and explore perspective that ultimately resulted in a life filled with much more possibility, optimism and hope. Despite the fact I experience the challenges of motherhood with a child with Autism every day, I am now happier and more fulfilled than I have ever been! I have also realized that it is my true passion and purpose to help others to live their best lives, which led me to become a personal empowerment coach!

The first significant shift was in myself, but over time, Leah also experienced a positive shift. Her meltdowns became shorter, I was more often able to comfort or distract her, she began to vomit less and eat new foods. She developed through her own growth and rebirth in to a much more joyful child. One of her strengths now is eye contact. When she looks in my eyes, it’s a feeling I’ve never had with another human being. It’s as if her soul sees my soul.

The Now

Motherhood, as I have experienced it, isn’t what I had pictured it to be. I have let go of that story, and have come to a place of acceptance for where my life is now. Leah is almost seven, and is completely non-verbal. She is still in diapers at an age where many kids are learning to tie their shoes and memorize multiplication facts. She sleeps in a camping tent for safety, with a mattress on the floor, and is awake for about two to three hours most nights. I choose to step away and let other people work with her and I’m okay with not trying to do it all my self. We have every battery operated light-up cause-and-effect plastic toy. I used to despise these toys, and even judge other parents for using them, but Leah loves them and responds to them. While many parents are limiting electronics, we are teaching and encouraging her to use the iPad for communication and learning. We still don’t all sit together for family dinners, and that’s just the way it is in our family for now. My husband and I often travel or go on outings with our other children separately, or else we have to hire someone to watch Leah. She is not yet in a place where we can travel or go to most parties or restaurants together. As much as I do not like to anticipate the future, I have come to terms with the idea that Leah may be dependent on us for the rest of our lives.

And I am content with all of this.

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The Gifts

As I have shifted my perspective and come to place of happiness and contentment, I am truly able to identify and appreciate the gifts of raising a child with Autism.

Seven gifts of raising a child with significant special needs:

• The gift of experiencing true FREEDOM by LETTING GO of expectations and completely accepting what is real.
• The gift that being her mom is part of MY STORY. As much as I would never have wished for my daughter to have Autism, raising her is a significant piece of my life story, which has strongly impacted who I am today and what I have to offer to the world.
• The gift of the Autism/special needs COMMUNITY. There is so much love, support, and understanding in this diverse group of people.
• The gift of CELEBRATING the littlest things (like the first time Leah ate a piece of chocolate and instead of gagging she reached for more. Or the time when I took her for a haircut and she sat in the chair for ten minutes and actually got a haircut. Or when she started nodding yes and no.).
• The gift of CHOICE. I have choice in loving my life and living my life, or allowing grief, stress and anxiety to cloud my every moment. I choose to embrace life to the fullest, to experience joy, and to be open to infinite possibilities.
• The gift of SIMPLICITY in a child with so much complexity. Leah may never know greed, vanity or jealousy. She lives her life simply, driven by her emotion.
• The gift of her SPIRIT. Witnessing Leah’s pure full body uninhibited JOY, is one of the most beautiful energies I’ve ever known.

Because of the lessons I learned raising a child with Autism, I truly believe I’m now happier than I’ve ever been. Autism altered my path in ways much deeper than I may have ever found on my own.

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Emily Berman is a Personal Empowerment Life Coach who guides others on their journeys to self-discovery, happiness and desires to live fulfilled lives. The twists and turns of Emily’s own journey include loss of life and loss of expectations, as her brother died in a tragic accident, she had three children in less than four years, and her middle child was diagnosed with severe Autism. Even a decade-long career as a special education teacher and a commitment to being a professional mom could not adequately prepare her for the devastation and disconnection these events caused. Through these experiences, Emily discovered tools and ways of thinking that helped her step fully into a happy and fulfilled life. She completed her coach training through The Coaches Training Institute, and is able to ignite transformation in others through her empathic, intuitive and candid coaching style. Emily also holds a Bachelor’s degree from Michigan State University, and a Master’s degree from California State University San Marcos, both in special education. Emily’s website is www.coachingwithemily.com.

The Art of Autism has a new part of our website called The Autism Shift about shifting our perceptions about autism. Emily is part of the Parent Shift.

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