Camp Onward is designed to help teens with Asperger’s syndrome and high-functioning autism develop social skills. According to co-founder Nancy Hagan, “Camp Onward is a chance for teens that have social difficulties to get together, have fun, get outdoors, be around animals, and learn a lot of different life skills.”
By Mari Nosal, M.Ed.
Parenting kids with special needs can prove to be a strategic balancing act. It encompasses the whole family. Not only do special needs kids face challenges, but so do their parents and siblings. Professionals and society at large tend to place focus on the child with special needs. The parents’ special needs are often placed to the wayside. In my case, as the parent of an adult son with Aspergers and a myriad of other challenges, I am beginning to wonder if my husband and I will experience and savor the luxury of privacy in the cocoon of an empty nest before the ravages of old age senility sets in to a degree where we cannot remember where we live. Parents often reorganize their own life to accommodate their child. When they are feeling vulnerable and unsure of both their child’s future and their own efficacy, parents suppress their own needs and feelings to maintain a strong persona. This persona is a mask of sorts born from their love for the child and a need to maintain a façade of strength with the intent of providing the child and the rest of the family a sense of security, and stability.
It does not matter what the child’s challenges are. They can be medical, neurological, psychological or even environmentally based. Parenting a special needs child can evoke a myriad of feelings in a parent. Unspoken fears, anxiety, regret for loss of the parents aspirations, loss of a parents personal identity, helplessness, hopelessness, wanting to be a perfect parent, guilt for not being a perfect parent and even resentment for their situation in comparison to families with typically developing children. Feelings of guilt can arise in the parent for having these feelings.
Special needs parents are the strongest people around. At the same time, they are fragile. Developing a tough exterior layer, the one we display to the public, is a honed skill , perfected out of necessity and born from the experience of dealing with insurance companies, professionals, and fighting for acceptance of our children within society. When denied services, insurance payments, etc., my retractable cat claws have emerged from underneath my human fingernails more times then I care to count for the sake of both of my sons. We fight the good fight for what is right and necessary for our child’s welfare, even at the expense of our own.
Although strong of character for sure, special needs parents may break down when they have been insulted by innocuous remarks that might not have fazed them in the least earlier the very same day. This occurs at moments when futility sets in and our actions haven’t lived up to our expectations. Expectations we set for ourselves are at times unrealistic to perform.
Special needs parents are human beings. I implore society at large to attempt to include and understand what a special needs family struggles with. If you do not understand, ask them, never assume. There is nothing that a special needs parent abhors more than individuals who have never interacted with a special needs child, knows nothing about their family issues, yet attempts to provide unsolicited advice. Ask the parents questions regarding their child and learn about them before placing judgment. Extend an offer of help to these families.
We are human. If special needs parents seem snarky on occasions it is not intentional. Setting our own needs as adults aside for the sake of our children can create stress and havoc which occasionally takes it toll on us. Like you, we are attempting to provide the best for our children and families. We attempt to fit in with a society of individuals with typically developing children. We attempt to create a semblance of normalcy. However, in a special needs family we quickly realize that we must create a new normal. A normal that works for our families.
We present a façade of self control that is just that: a façade at times. A façade, born out of necessity. Keep this thought in mind. If you ask a family with special needs children how they are., they may respond with a cursory I am fine. Ignore their response, remember the façade and offer to help them out by lending an ear, asking if they need anything. Even a compliment that puts a smile on their face when they do not think they can smile. In a nutshell, attempt to make them feel special.
For parents of special needs children you are first individuals with aspirations and feelings of their own. They are special needs parents but individuals as well. My most important title is a Masters degree in M.O.M. (MOM) , but I also have a B.A. in psychology, a minor in sociology, am C.A.D.A.C. qualified and possess a title M.Ed. The most important part of being a special needs parent is accepting the life the diagnosis brings, but also remembering who you were before your child’s diagnosis. For me I need to remind myself that I am an educated woman with advanced degrees on those days when my child causes me to feel inept and feeling as though I flunked parenting 101. I need to remind myself to combine my academic , professional and parenting background and harness it as a productive tool to help other special needs parents who walk the same path as I. Our challenges can assist other parents from feeling inept, frustrated or isolated. Parenting special needs kids is a club no one wants to join. However,after graduating from the college of hard nocks with a PHD in special needs parenting we must share our knowledge with each other. You may feel like you have been dealt a s****y card occasionally. However, think of experiences in parenting special needs kids as akin to manure. Manure is meant to be spread around in order for healthy soil. You have been educated through your experiences and possess knowledge that is a valuable resource to society at large. Special needs parents can truly help others through their experiences. So walk tall and proud, you are functioning in an extremely important position. Assisting a human being (your child) towards the ultimate goal of successful assimilation into society and equipping them with skills and support that will ensure they lead the most independent and productive life feasible.
Even if your child is now an adult, as is my son, a parent’s love is unconditional and is not separated by boundaries of time constraints. We stand by our children and encourage their growth, while continuing to love them unconditionally both as they soar forward and slide backwards, relishing in developmental growth and success that parents of typically developing children take for granted.
Heck, we have to believe. Our kids are not akin to an item that we purchased at Target that is replaced for a model that is not damaged. Our kids are irreplaceable. They are human beings who we have to love through the good and challenging times, unconditionally accepting the full package.
This article was originally published on LinkedIn: Pulse, reprinted with the author’s kind permission.
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.