Guilt: The Elephant In The Room of Special Needs Parents

By Mari Nosal M.Ed. CECE


A parent has just received confirmation that they are pregnant, and they receive a due date. It is a moment that is permanently imprinted in a parents mind with metaphorical indelible ink. For any parent, a myriad of emotions are experienced. We experience feelings of joy that a human life is growing within our womb and the excitement of welcoming a new life into your family. We experience fear that we will not be a capable parent, won’t possess the means to provide properly for the child. If you have other children, you may worry that you will not love this child as much as your last. The list goes on.

When the child is born, all parents soon learn that love is not limited. You do love your latter children as much as your first. We learn as parents to appreciate and love all of our children while possessing the capability to appreciate them for their distinct personalities. We soon realize that our fears are unfounded. We inevitably make due with whatever financial means are available, love the child with an unconditional love and admiration that only a parent can possess for their offspring.

You will imagine what your unborn child will look like, what sex they will be, and dream about days at the ball field, dance class, play dates and more. You will wonder about their future. Will they be the next president, a famous singer, a pro ball player, a business mogul?

If the child is born and receives a diagnosis of developmental disabilities or other special needs challenges, your capability to love your child unconditionally will quickly become apparent. All of the dreams that you had are traded in to accept and support the child that is. Your flesh and blood. You believe in them and in return the child will believe in themselves. The child is viewed reflectively by parents as a diamond in the rough. Despite the dark charcoal exterior, you know there is a diamond within that sparkles. You continuously buff the dark exterior to reach the diamond, no matter how many setbacks occur.

Your goal? To assist your child in achieving the highest level of autonomy and happiness possible for them. Heck, special needs or not, this is what every parent with a child; challenged or not wants for their children. We are no different in that respect than parents of typically developing children.Yet, you keep in mind that even the shiniest diamond has flaws as your child has limitations. therapy appointments, restructuring your own time to help your child experience success to the best of their abilities. After all, just like parents of typically developing kids, you wish to have a well balanced happy healthy child and family life.

You go through a grieving process. The inevitable outcome is that you will gradually develop a new type of normal. We grieve the child who initially resided in the confines of our mind and gradually accept the child we have. We learn to note the positive in them and not merely what capabilities they do not possess. As special needs parents, you take nothing for granted. Every milestone reached that you never expected your child to accomplish is savored in a way that parents of typically developing parents could not begin to comprehend. For them, playdates, group sports, outings are an unsaid and everyday part of their life.

While parents of typically developing kids possess hopes that their child will become captain of their baseball team, special needs parents just want their child to enjoy being part of a team. While other parents worry about how popular their child is, special needs parents silently hope for their child to have a friend.

The elephant in the room of a special needs family will be parental guilt. Even after going through stages of grief upon accepting your child’s challenges and the new normal the family creates out of necessity, guilt will occasionally rear it’s dark head. Every parent wishes to create an optimal life for their children. Guilt is born out of parental love as well. The instinct we possess to protect and provide for our children at all costs makes us tend to take personal responsibility. Questions will prance through your mind, even as with our case, after your child with challenges is an adult. For our children never outgrow a parents love.

You may ponder whether you did something wrong during pregnancy, or neglected something. Parental guilt may lead you to scrutinize familial trees on both sides of the family. Did my genes cause this disability or the other side of the family? Is this Karma? Am I being punished for personal wrong doing? You will most likely scrutinize every would of, should of, and could of feasably possible. Societal glares and expectations, televison shows that portray the perfect nuclear family and worse yet; the “studies” that are rampant that blame mothers for causing their childrens’ challenges. What a guilt producing experience. And, unfounded to say the least.

(“My Personal Opinions Regarding Outlandish Claims About How Autism Occurs” https://www.linkedin.com/pulse/my-personal-opinions-regarding-outlandish-claims-how-mari)

Words can wound special needs families.

Comments from others and unsolicited judgmental information from strangers can elicit feelings of uncertainty and guilt. While witnessing your child in the midst of a public meltdown; strangers may insinuate that your child merely needs more discipline or worse yet a slap (which they do not). While not being privy to the challenges faced. Some parents have told me they have experienced employees from the department of social services or police officers knocking at their door due to an an anonomous individual who assumed their child’s screams, banging, or bruises were the product of being abused. In reality, a parent may have been doing the best that they could to assist their child through a major meltdown and self injorous behavior that occurred due to autism or an array of emotional and behavioral disorders.

Guilt can occur due to worries regarding providing ample attention and support to typically developing siblings.

Parenting typically developing children and siblings with disabilities is a double edge sword. On one side of the blade , we worry about the special needs child being provided with every possible support and intervention possible. On the other side of the blade resides the typically developing child who we wish to provide the utmost attention and support to as well. Challenged or not, we love each of our children. It is quite a balancing act to say the least.

The daily regressive slips and slides of the special needs child are intermingled with milestones acheived. The fear of neglecting our typically developing child is intermingled with witnessing the love and support for their more challenged sibling.

The fact that you feel guilt regarding your parenting skills is confirmation of being a good parent, not an unworthy incapable one. For guilt transpires from uncertainty. Uncertainty is instilled from your wish to provide children with the best opportunities possible. If you did not love your children with the strongest love of all, parental love, guilt would not occur.

As we accept our children in a nonjudgmental fashion, we must accept our own fallibility and humanness as well. During moments of uncertainty and questioning your worthiness and capabilities as a parent, look in the mirror and say, “I am a mere human and am doing the best that I can.” In consideration of the fact that all humans have limitations, not merely our children, isn’t that all we can expect from ourselves?

We teach our children to self acceptance. Perhaps as parents, we need to cut ourselves some slack as well. For parenting children with challenges is a humbling yet frustrating experience. We find internal strength that we never thought we possessed. Yet we occasionally feel as though we are helpless and useless with our hands tied behind our back as well. We savor and find joy in milestones reached that were predicted never to occur. Yet, we will occasionally feel like we failed our children during plateaus and times of strife.

This is called humanness. These feelings confirm your love for children with challenges and siblings typically developing. In fact, you are a great parent who merely possesses the fallibility and emotions of a human being. You are human. Remember this when times are tough. While parenting your children, I am sure that you have wanted to occasionally yell I give up and through in the towel. We have all been there. But on days when you have fallen on your proverbial face, you have always stood upright once again to face another day and deal with challenges face to face. And conquer you will, One step backward and two steps forward. Rinse and repeat day in and day out. Would I change my life? Not in the least. Accepting and liking a situation are two distinct things. I have accepted what is and through the challenges and uncertainty, I have become a more grateful and humble person who never takes anything for granted. Savor life, live and learn from it and most of all appreciate and be aware of lessons learned. Your lessons learned can one day provide a teachable moment for others who trod down the same path that you have.

Cheers,

Mari Nosal M.Ed. CECE Education professional and most important; special needs parent – the most important job that I will ever have. :-0)

 

.This article originally was published here. Reprinted with the author’s kind permission.


NOTE FROM MARI- Are you looking for a book that explains how to interact/understand the needs of kids on spectrum? I believe that my book written by me, a special needs parent/educator who has actually walked down the special needs path both as a parent and an educator? It was written from the passion developed from my experiences as a parent wading through the challenges of bringing up kids who are wired differently and my experience in classrooms I am the parent of an adult son with a late DX of Aspergers and earlier diagnosis of ADD/Anxiety. My family has experienced learning disabilities, medical challenges and more. I have certainly walked the walk of a special needs parent and still do. My goal is to light the path for parents who feel as though they are alone and walking down a dark path. There is a LIGHT at the end of the tunnel and my goal is to supply you with some inspiration while educating society in a collaborative manner as well. Check out my book 10 Commandments Of Interacting With Kids On The #Autism Spectrum. Written from the heart with a passion to make a small dent in society with the ultimate goal of increasing tolerance and acceptance of those with different needs. May we all one day, ALL live, love, laugh, play and work together in a society void of judgment and filled with acceptance and understanding for our fellow human beings.

Check out ten of my thirty commandments for autism posted on the national ARC website by AUTISM NOW :Ten Commandments of Parents with Kids on the Autism Spectrum https://shar.es/1wldwF via @sharethis

If you enjoy the sampling of commandments for the autism spectrum. You are most welcome to stop by my Amazon book website to check out my five star reviews and have a free preview of my books.http://lnkd.in/dcXbMjH

Author Image
Mari Nosal, M.Ed., CECE received her B.A. in psychology and her Masters degree in Educational Foundations from Curry College. She spent years as a school age coordinator, blogger and author, and has over 30 years’ experience within the human services and education fields. She has had special needs articles published in several magazines. Mari is a published author whose special needs Autism and Asperger related books can be found on Amazon.com Barnes and Noble and Createspace. She is certified by the Department of Early Childhood Education as a lead preschool teacher, an infant and toddler teacher, and site coordinator qualified to manage school age programs.
Mari also works with Non Profits, schools, and society at large as well. She conducts public speaking engagements that provide them with the tools and knowledge to help special needs children, (predominantly autism and Asperger (with her specialty being Asperger Syndrome) to become as independent and successful as possible.
Mari has presented autism workshops to staff, management teams, and parent groups. She offers tips on curriculum development and behavior modification within the classroom and through in-services. She is certified by the Department of Early Childhood Education as a lead preschool teacher, an infant and toddler teacher, and site coordinator qualified to manage school age programs.
Inquiries regarding availability for Workshops, Public Speaking Events, motivational speaking and training can be arranged via messaging on LinkedIn.
Author Image

Mari Nosal, M.Ed

Mari Nosal, M.Ed., CECE received her B.A. in psychology and her Masters degree in Educational Foundations from Curry College. She spent years as a school age coordinator, blogger and author, and has over 30 years’ experience within the human services and education fields. She has had special needs articles published in several magazines. Mari is a published author whose special needs Autism and Asperger related books can be found on Amazon.com Barnes and Noble and Createspace. She is certified by the Department of Early Childhood Education as a lead preschool teacher, an infant and toddler teacher, and site coordinator qualified to manage school age programs. Mari also works with Non Profits, schools, and society at large as well. She conducts public speaking engagements that provide them with the tools and knowledge to help special needs children, (predominantly autism and Asperger (with her specialty being Asperger Syndrome) to become as independent and successful as possible. Mari has presented autism workshops to staff, management teams, and parent groups. She offers tips on curriculum development and behavior modification within the classroom and through in-services. She is certified by the Department of Early Childhood Education as a lead preschool teacher, an infant and toddler teacher, and site coordinator qualified to manage school age programs. Inquiries regarding availability for Workshops, Public Speaking Events, motivational speaking and training can be arranged via messaging on LinkedIn.

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