Special Needs Parenting:Feeling Like A Square Peg That Doesn’t Fit In The Round Hole

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.

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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.
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Mari Nosal M.Ed., CECE

tinyurl.com/kdspqy9

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

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  workshops to staff, management teams, and parent groups in the southeastern Mass. area and worldwide via Zoom, Skype ,pod cast and more.44444444444444. 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 to inquire regarding speaking fees. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

All Children On The Autism Spectrum Become Adults With Autism; Is Society Equipped ?


 

Fall has transitioned into winter, The outdoor temperature becomes cooler and we wistfully recall flip flops, shorts and trips to the beach where we basked in the summer heat traded for falling leaves that promise to leave our trees bare, winter coats, snow shovels and boots Transition is a word that can send a chill that cuts like a sharpened knife through the soul of a parent who has a special needs child aging out of the system and preparing to enter the world of the unknown, like the chill of winter that sends shivers through our bones .

The world of adulthood. It is a milestone that resonates with any parent whose child has or is preparing to leave the cocoon of supports and services offered to them in childhood. As with changing seasons, we must be equipped with proper support in order to survive. In order to physically survive the transition of seasons, we must possess supportive items such as heat and winter coats to function at a healthy level. In order to survive the transition through life, we must have the support of a village. A societal village of sorts’ that is necessary for successful transitioning. As one would not venture out into a chilly day without proper gear to keep them warm, a supportive metaphorical village is required as our children venture on into an unknown world called adulthood to assist them in achieving successful assimilation, mastery and  independence.

 

Suddenly, I.E.P. ‘s , the I.D.E.A. laws that ensure a child educational rights and support services do not pertain to them anymore. Children who do not qualify for disability age out of parents insurance. Transition is moving from one stage of life, childhood, to another, adulthood. The child who received supports in school ,is sent out into the stage of transition to fend for themselves upon graduation. It is akin with providing no safety harness and asking a child and their family to scaleMount Everest.Children who possess average or above average intelligence leave school with no support groups, transitional services and more with a mere “good luck, you will do fine”.

Unfortunately, this is the norm for transitioning teens and young adults. . True, many strides have been made in the past decade. The recognition that Aspergians have receptive and pragmatic speech deficits although their expressive vocabulary appears large has fueled the development of speech therapy programs for children.I am thrilled that children are identified with Aspergers syndrome and high functioning forms of autism now at much earlier ages. Through earlier intervention, these children will be equipped with better developed compensatory strategies in preparation for when they are older. At such a young age their synapses are much more malleable as well.

One thing has not changed however since my son was diagnosed with Asperger’s syndrome. The support for transitioning teens and young adults aging out of the system is miniscule to say the least. After years spent fighting and advocating for services and receiving supports, the cocoon of support is gone. The game plan changes, the cocoon opens up and your child emerges as a metaphorical butterfly who must spread their wings.As transition to adulthood occurs, you must attempt to leave the childhood supports and start researching and advocating for new services. It is enough to cause a parent to pull out their hair until they are bald and babble incomprehensibly while displaying a whole body encompassing motor tick.

During this time period, remember how being proactive propelled you to advocate for services when your child was young. This may assist you in mustering up the energy to experience it again at the adult level. You did it before, you can do it again. The difference is that you will not or should not be the only advocate. You must teach your adult or soon to be adult child to self advocate by your side while modeling. AVANTI……moving forward from childhood to adult goals.

Diagnosis and programs for higher functioning individuals on the spectrum that promote earlier identification, social, remediated and compensatory skills programs have blossomed over the last decade for sure. Unfortunately, the majority are for children. This is a great boon as higher functioning individuals on the spectrum used to remain unidentified throughout life culminating in not living their lives to their full potential.I surmise that because diagnosis generally occurs in childhood, autism is associated with children. Unfortunately, autistic children become autistic adults. With the increase in identification we are about to have an influx of adults including special needs adults that have already reached the age of consent who will and are in need of services. When individuals on the spectrum become adults, a large hole does not merely open up in the ground, engulfing them so they disappear from the face of the earth. They are our children, spouses, co – workers and friends who exist side by side within society by nuerotypicals.

The majority of individuals on the autism spectrum take longer to develop socially, emotionally, neurologically and biologically then typically developing peers. Theymay turn the magic age of eighteen and age out of programs and services but their mind and body may be a 1/2 decade or more behind that chronological age. It is my assessment, that it is economically feasible to offer programs for people on the spectrum and their families throughout the lifespan versus the societal and emotion costs incurred resultant from no intervention. Kids transitioning into adulthood with no transitional supports whatsoever may doom them to a life of homelessness, dependence on families, self medicationi.e. alcohol and drugs, leading a life where they do not even come close to achieving goals in life that they possess the capabilities for. My statement may sound dire but working in the substance abuse field in the past, many individuals were found to be self medicating due to undiagnosed mental health issues and learning disabilities. When identification occurred and supports were in place, ie counseling, support groups etc. the success rate of staying drug or alcohol free skyrocketed. In my opinion, this is a win win situation for all. 1

The positive outcome of offering training and supports, is a societal system not strained by criminal recidivism, underemployed people on the autism spectrum and individuals who require public assistance due to being poorly equipped to function in the adult world. With the right interventions, individuals will become independent adults who instead contribute to society as proudstax payers We have a wide and vast group of widely diagnosed individuals who are about to enter adulthood. Sadly, the present state of affairs has caused some parents with transitional kids and older on the spectrum to stop working and teach the skills to the best of their abilities to their kids that society does not offer.Autism Speaks funded research in 2014. It found that adults on the spectrum who have jobs that encourage independence showed a greater sense of self esteem anbd increase in positive behaviors, skills and activities of daily living. 

Unfortunately, without skills training and support finding sustainable employment for people on the spectrum is not an easy task. A 2012 study in the journal of pediatrics found that, seven years after graduating from high school, one in three young adults on the spectrum had no college or vocational education or paid job experience.Society, autistic children do become autistic adults. They do not merely disappear from the face of the earth when aging out of the system. From transitional programs in high school for kids who fall between the cracks and do not qualify for birth to 21 programs ,to supplying family transitional support, mentors, job coaches, social groups and everything in between, we must be ready for the influx of young people who need societies help We have two options, we can open our eyes to the struggles of adults on the spectrum, create and fund programs that ensure their success present and future. Or we can continue to keep blind eyes and backs turned on a vulnerable population who requires assistance and deal with the consequences.

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My perspective is that PREVENTION is always paramount versus REMEDIATION.

Quoting Plato: “To live with indifference is to live with evil men” or in modern gender neutral speak (evil people). Will society be part of the success or the failure of families and people on the spectrum. The answer……is up to you: every human being has a right to have their challenges recognized and gain assistance so they can transition into independent, socially successful individuals. In the end, they need you, society at large to show them that you care enough to assist them. Society has changed. Diagnostic techniques are readily available as never before. behavioral interventions and larger knowledge bases for implementing and individualizing compensatory strategies are prevalent as never before. Perhaps it is time to redefine the descriptors for developmental disabilities as well. 

The knowledge and services are available in theory. In terms of individuals with Aspergers and high functioning autism, recognition is lagging far behind however. Without acknowledgment and identification for this population who greatly needs support and understanding, if the services are not available for them that is akin to possessing a can of beans when we have no can opener. Without the can opener, the can of beans can not be opened. Society, YOU must be the metaphorical can opener.

Mari Nosal M.Ed. CECE

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.

  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 at http://tinyurl.com/kdspqy9

​​Mari Nosal’s Ten Commandments Of Interacting and Communicating With Kids on the Autism Spectrum and Related Commandments Paperback Book


Ten commandments new book cover BookCoverPreview.doThis book shows you real life examples of a collaborative system from someone who spent a career designing grade-school curriculums for children, parenting a son with Aspergers Syndrome, and wor…

Source: ​​Mari Nosal’s Ten Commandments Of Interacting and Communicating With Kids on the Autism Spectrum and Related Commandments Paperback Book

​​Mari Nosal’s Ten Commandments Of Interacting and Communicating With Kids on the Autism Spectrum and Related Commandments Paperback Book


Ten commandments new book cover BookCoverPreview.doThis book shows you real life examples of a collaborative system from someone who spent a career designing grade-school curriculums for children, parenting a son with Aspergers Syndrome, and wor…

Source: ​​Mari Nosal’s Ten Commandments Of Interacting and Communicating With Kids on the Autism Spectrum and Related Commandments Paperback Book

Excerpt From Ten Commandments for Interacting With Kids On The Autism Spectrum



Thou shall not compare me to others.
Please remind me, and note the talents that I possess. This increases my confidence and positive self worth. Learning disabled or not, we ALL have talents to contribute within society. I need you to help me realize what mine is. Believe in me and I will believe in myself.
 Thou shall not exclude me from activities.
Please do not mimic me, ignore me, or bully me. Please invite me to play with you. It hurts my feelings when I am excluded. I like to run and jump in the playground, and be invited to birthday parties too. Grownups can help me make friends by encouraging other children to play with me. I can be a loyal friend if you get to know me.

 

Mari Nosal M.Ed

I want my experiences and challenges to be used productively as a learning tool for other parents and for educators as well. When my son was diagnosed with Asperger’s a decade ago it was a foreign word among many parents and professionals alike. I fought for help never giving up. Through my books I wish to help parents feel like they do not walk in the dark, that they are not alone, empower them and that there is light at the end of the tunnel. I also want to educate society at large on the topic of the autism spectrum. I believe all parties involved need to work as a collaborative team in order to insure a special needs child’s success.If you like my articles, aside from being the parent of an adult with Aspergers Syndrome/ A.D.D and an educational professional, I am also a published author of many special needs and autism related books written to inspire and support parents, families, educators and society at large as well. Please stop by and check out my books on Amazon.com at Mari Nosal : Please stop by my site at Amazon Books and check out my published books on autism aspergers special needs and more http://tinyurl.com/kdspqy9

Excerpt From Book Ten Commandments For Educators Who Teach Kids on the Autism Spectrum


Thou shall practice reflective observation and remediation. If I become distracted, hyperactive, speak out of turn, or agitated, please attempt to find out why I am doing so. It is easier to prevent a behavioral issue than to try and re-mediate it afterwards. If you notice the early warning signs, you may be able to make adaptations to prevent escalation. Once my behavior has gotten out of hand it will be difficult to assist me with getting back on task. Simple techniques may work. If I am having difficulty focusing, seem agitated, or become socially inappropriate, the bright fluorescent lights may be hurting my eyes. Please remember that my five senses are hypersensitive and I can become over-stimulated by everyday sights, smells, and sounds. Perhaps, dimming the lights in the room may calm me down. If I appear hyperactive, perhaps you could find a job for me to do in the classroom. The job could be as simple as making me a helper and asking me to hand out paper, or art supplies to the other children, pass out homework etc. so I can stretch my legs without being singled out in front of my classmates. If I am distracted by the other children while expected to take a test, perhaps you will allow me to wear earplugs to squelch my hypersensitivity to noise. I know I can be a lot of work at times, especially in a inclusive classroom. It is worth your effort, I assure you. It is a win-win situation for me and my classmates. They will learn to accept and respect differences in people through their interactions with me. They will carry this empathy into adulthood and the workplace. In turn, I will learn appropriate social skills through observation of my neurotypical classmates. With your assistance, the other children will learn to note and appreciate my talents and contributions within the classroom. I will learn how to be a member of a group who appreciates me. This in turn will boost my positive self-efficacy.

Mari Nosal M.Ed

I want my experiences and challenges to be used productively as a learning tool for other parents and for educators as well. When my son was diagnosed with Asperger’s a decade ago it was a foreign word among many parents and professionals alike. I fought for help never giving up. Through my books I wish to help parents feel like they do not walk in the dark, that they are not alone, empower them and that there is light at the end of the tunnel. I also want to educate society at large on the topic of the autism spectrum. I believe all parties involved need to work as a collaborative team in order to insure a special needs child’s success.If you like my articles, aside from being the parent of an adult with Aspergers Syndrome/ A.D.D and an educational professional, I am also a published author of many special needs and autism related books written to inspire and support parents, families, educators and society at large as well. Please stop by and check out my books on Amazon.com at Mari Nosal : Please stop by my site at Amazon Books and check out my published books on autism aspergers special needs and more http://tinyurl.com/kdspqy9

Excerpt From ‘Ten Commandments of Interacting with Kids on the Autism Spectrum For Parents


Thou shall tell parents of autistic kids what they do well: We struggle with our child’s special needs, attempt to carve out time with our other children so they do not feel left out, carve out time for our spouse, attempt to create a copacetic environment for our families, love and accept unconditionally, and more. We parents are occasionally insecure regarding our parenting skills. We are not immune to the glaring disapproving eyes, and mumbles of disapproval regarding our parenting style of our special needs kids. We need support and understanding from you as we feel helpless when we cannot help our child during a meltdown, etc. Please tell us what we do right occasionally and offer to lend a hand. It means the world to a parent of a special needs child to receive a compliment regarding them or their child when the parent feels like giving up hope.
I want my experiences and challenges to be used productively as a learning tool for other parents and for educators as well. When my son was diagnosed with Asperger’s a decade ago it was a foreign word among many parents and professionals alike. I fought for help never giving up. Through my books I wish to help parents feel like they do not walk in the dark, that they are not alone, empower them and that there is light at the end of the tunnel. I also want to educate society at large on the topic of the autism spectrum. I believe all parties involved need to work as a collaborative team in order to insure a special needs child’s success.If you like my articles, aside from being the parent of an adult with Aspergers Syndrome/ A.D.D and an educational professional, I am also a published author of many special needs and autism related books written to inspire and support parents, families, educators and society at large as well. Please stop by and check out my books on Amazon.com at Mari Nosal : Please stop by my site at Amazon Books and check out my published books on autism aspergers special needs and more http://tinyurl.com/kdspqy9

 

Mari Nosal M.Ed.