Parenting a child with special needs to adulthood has produced ambivalent feelings. Bringing up a child with Aspergers syndrome and another son 22 months his senior who presented with medical challenges has proven to be a double-edged sword. On one side of the sword, I have felt heartbreak, grief for the child I dreamed of before they were born that did not become the child that I imagined they would be. I experienced fear for my child’s future, even feeling like an incompetent boob at times unworthy to be their parent. I observed other children develop on an age appropriate timetable, A timetable which my child lagged behind.
On the other side of the sword, my experiences have provided me with a gift. Despite the challenges associated with parenting special needs children. My children, my husband and I have grown and unified together. The children I imagined they would be became the child they were supposed to be. They became the children that I would not only learn to accept, but the children that I would embrace , love and admire. I learned through them that every human on the planet has imperfections which represent our humanness and is not indicative of being broken.
They are my teacher as well as me being theirs. Resultant from being a square peg versus a round one, I place less importance on materialism and more on the spiritual beauty of this journey called life.. Together, as a family, we have learned the meaning of team work. When we take two steps backwards, it is just that: two steps backwards. When this occurs, I have learned to get back up on my feet and work as an interdependent team and carry on. For all of the steps our family has taken backwards, we have taken strides forward as well. Like a flock of geese, when one of us feels defeated, another steps forward and heads the flock until the tired and defeated member regains their strength. Challenges do not only tear people apart, but can bring them together as well. It is during times of strife that humans learn how strong they really are.
I appreciate milestones and developmental growth that neurotypical parents take for granted. I have developed a level of social awareness for mankind and society at large that I never would have possessed without children with special needs. I gained an awareness of human fallibility through my children. I developed a level emotional strength and perseverance by taking care and advocating for my children that is akin with a mother lion baring her claws to protect her cubs. During moments when I felt as though I could not go on, as with the mother lion, I expressed a sense of determination and drive to protect my children with an energy that was extracted from an innate need to protect and teach my young and fierce love for them.
My experiences have provided me membership into a club that I did not choose to join. The club for special families. I coined my imaginary club, the club for special needs families because parenting special needs children affects the whole family. Children, parents, siblings extended family members struggle with issues related to living in a special needs family. It affects the continuity, belief systems and most importantly priorities that the familial unit is composed of. My life (our lives) have been changed forever. As I mentioned earlier, our lives have been fraught with uncertainty and trepidation. However all challenges that change our lives are not always negative.
I have grown and learned to stop and smell the roses. I have learned to believe in the unbelievable. I have learned the meaning of faith, an intangible yet ever present force in my life. Faith has taught me to hope, dream, persevere and believe in that which is not visible yet lives in our heart.
We may not be able to physically touch or see faith in a tangible sense. We sure can feel it renew our very soul and provide us with the energy to trudge forward.Look hard enough however and you will witness reminders of why having faith is important everywhere. Reminders that instill hope when we feel hopeless, that show us the altruism and good in the world when we feel despondent and alone. It is alive in kind acts of strangers, a kind note we suddenly receive or a developmental milestone met in our children just at the moment when we want to throw in the towel and give up overwhelmed with feelings of futility. Faith is renewed like a surge of light in our heart through smiles from a stranger when we are sad, a compliment when we feel insignificant, even the person who pays for a meal for the person behind them at a drive through. These acts remind us to hope, believe, never give up and yes, instill faith in us. I could provide more examples but I am sure you get the idea that I am attempting to convey. All of these acts of kindness, miracles witnessed renew our spirit, or our faith if you will.
We sure can rely on it in times of strife. Instead of looking into the future and worrying about what will be, I look into the past and look at what was and what is. Hence, providing myself with a window that allows me to reflect and focus on the strides my now adult children have made, rather then what is not and may not be large bursts of growth. I remind myself to look at the baby steps for everything will not occur on my wishful timetable. It will occur in a time frame that is right and works for my kids. Coining an old phrase… Focus on the past only long enough to learn from it for the past is gone. Do not worry about the future for it has not occurred yet and is unknown. Focus on the present for the present is a gift.
I have changed my perception of our family presenting as abnormal, perhaps being less then the neurotypical family down the road, to creating a new normal. A normal that works for us. Rather then perceiving us as the square peg attempting to fit in a round hole, I now perceive us as merely the square peg. The square peg will only fit in a round hole if it is re – designed. I now choose to perceive the square peg as the peg who stands out from the others, is different yet not damaged. I now walk tall and use our experiences to make a difference in the world. Being different, propels us with the force of a cannonball shot from a cannon to create a new normal and a life of acceptance and hope. We are different yes, just like every other human being. Different does not connote inferior, merely marching to the beat of our own drum.
I possess a Bachelor of Arts degree in psychology with a minor in sociology. I have my Masters degree in Educational Foundations as well. I have worked as a professional educator, done public speaking engagements and more. Although my academic and professional background provided me with information and experience within the special needs field, It did not provide me with a window into what being a special needs parent entailed. One cannot Google Aspergers Syndrome and profess to be an expert. I had to live it. I have learned more from special needs parenting then I ever learned in the classroom.
The college that I attended to be a special needs parent is called the College Of Live And Learn. ALL lessons within the College Of Live And Learn are performed as on the job training. Training and experiences that provided me with the drive to go back to college with the ultimate goal of making a dent in society at large. Thus, creating a world that embraces neuro- diversity . A world that not merely notes the deficits in people, but appreciates and gains an awareness of the strengths thatevery human being, challenged or not possesses.
Mari Nosal M.Ed., CECE
About the author: My son had experienced many school , behavioral , motor skill and processing issues before he was diagnosed with Aspergers Syndrome.
During this process I realized that a lot of parents were going through the same thing. I wanted to make sure that no other parent would go through that experience feeling as though they were walking in the dark.
Considering my experience in the human services and educational fields, I decided to write a book, “Ten Commandments of Interacting with Kids on the Autism Spectrum”. tinyurl.com/kdspqy9
If you would like to know more regarding my inspiring journey which led me to become an autism advocate, perform international interviews via internet and pod casts. I am a published author and blogger. I can be contacted for public speaking engagements and book presentations in Massachusetts and surrounding areas. I am also available for podcast and radio interviews. For more information, please private message Mari Nosal via LinkedIn .
If You enjoyed this article. Check out more like it in my books at Amazon.com tinyurl.com/kdspqy9