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.

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When special needs children appear to have unlearned skills they possessed


Being the parent of a child with special needs can produce a myriad of emotions that are connected to our children’s growth and development. Some of those emotions will be guilt (did I cause this somehow), anger (why my family), feelings of loss (for what could have been) even a twang of envy when observing typically developing kids skill – set which your child struggles to develop or even possess. These are merely a few examples as each family is different.

When the children are born, you go through a grieving process of sorts. While pregnant, visions of whether the child will be a boy or a girl, what they will look like, whether they will grow up to be the next president, famous ballerina or football player and future parental and social interactions with friends prance through your head.

When the child is born and receives a diagnosis all of the dreams that you had are traded in for 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.

What inevitably happens in the majority of families is that you 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.

For the special needs parent, a simple shopping trip or outing with a child can take days to plan for. They may struggle with getting through a simple shopping trip without some extraneous trigger sending their child into an emotional tailspin. Thus, you cut your outing short. A special needs family who attempts to watch a movie in a theater or enjoy a simple family meal in a restaurant may be forced to leave due to circumstances beyond their control. A child may have an unexpected meltdown, make loud noises that are beyond their parents control until inevitably you hear the “Can’t you control your child” from other patrons.

That said, I would like to remind you that bringing up a child with special needs is a humbling, ego busting, negative self efficacy promoter and occasionally even a lonely job where it feels akin to walking down a dark path alone. You are far from alone and doing the best job possible. Remember, you ARE a good parent. If you did not love and care about your children immensely, those negative feelings of insecurity and failure would not rear their ugly head within. Those feeling arise out of frustration and uncertainty that you are not providing the best assistance to those you love the most.

The most powerful self esteem snatcher for a parent of special needs children is to revel in a skill the child has acquired which was not expected. Upon observing your child’s newly acquired skill, strong feelings of hope are felt by the parent. Just when the child achieves a new skill and we allow ourselves permission to dream about their future in a positive light, the child may regress in another area where skills had been acquired long ago. Many parents have thrown up their hands at this point and felt like giving up, cannot take parenting a challenging child any longer or simply feel like a failure while focusing on the child’s regression in skills.

Regressive behavior during development of milestones can actually be a temporary yet necessary development while the child acquires new skills. Can regression be positive? I provide to you a resounding yes. Regressive behavior can result from stress, fear of the unknown, frustration due to challenging circumstances or delving into a new experience or in this case learning a new skill.

Many equate regression in children as returning to a more comfortable time in their life that is not age appropriate. Ie the potty trained child who starts wetting the bed, or the older child who wants a pacifier or bottle which assists them into retreating to a safer more comfortable time in their life. Regression can also pertain to unlearning old behaviors or skills while learning new ones.

Learning the new skill may produce uncertainty in a child. They are entering a new territory that is challenging. In doing so, other skills may be unlearned requiring more attention from the parent for the child as he/her ventures forth with a new challenge. Hence, the child’s progression becomes two steps forward and one step back. Even adults experience this.

Haven’t the majority of we adults experienced temporary loss of skills when dealing with an all encompassing challenge such as death, illness, family challenges? Heck, I recall being so entrenched in a family crisis in the past that I misplaced my car keys only to find that they had been mindlessly deposited in the freezer by me. I recall being preoccupied with other challenges that warranted my attention to the extent that I temporarily lost the ability to write articles. Although I possessed the capability I could find no words to transfer from my mind to paper. I am sure all readers can recall variations of my examples within their own adult lives.

Occasionally even as adults, we seem to unlearn skills ourselves and they take a back burner while we process challenging events Learning is not a linear experience. Children learn in what I define a form of disequilibrium, especially children with special challenges. At times, everything is smooth sailing and you think your special needs child is on track. Then BOOM, the child appears to regress rather than progress. In fact, progression is generally evident during times like this. Kids do not develop in all areas simultaneously. Be a sleuth think of regressive periods in your child’s life as touch points.
When your child appears to unlearn skills or display much younger coping skills, attempt to identify a recently acquired skill or one they are attempting to master. You may just spot emotional or physical growth hidden in the child’s so called one step backward. These periods may go on for days or even a month.

During these periods you will have thoughts of should of, would of, could ofs running rampant through your mind. Remember that you are doing the best that you can with the tools you have at your fingertips. Your children do not come with a handbook. Each child is different and will react to different interventions in different ways. But I assure you that progression will take place with time, patience not only for your child but for yourself as well. You are your child’s best and strongest advocate. Do not let would ofs, should of, and could of demons that are generally developed from parental guilt versus reality strip you of your hopes and dreams for your child. After all, isn’t hope the biggest strength for you and a gift to reinforce in your child the most important force you possess to keep on with trudging forward.

Hang in there and never stop dreaming, hoping and believing no matter how dark you feel the road is. You and your child will keep progressing. After all, you made it through yesterday and the day before that. You will make it through today and all days thereof as well. Your kids believe in you. Remember to believe in yourself as well.

From the heart of Mari Nosal M.Ed

I am a published author and focus on books pertaining to autism and Aspergers Syndrome. I have had special needs articles published in several magazines. I have been interviewed several times in print, on pod casts, and internet T.V. regarding the autism spectrum. I have presented autism workshops to staff, management teams, and parent groups. I offer tips on curriculum development and behavior modification within the classroom and through in-services. I am 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. I have recently ventured into public speaking engagements to educate both parents and educators on autism and Aspergers Syndrome 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

A thought Regarding Special Needs Individuals


 

AN INDIVIDUAL
DIAGNOSED WITH SPECIAL NEEDS SHOULD NOT BE DEFINED BY A DIAGNOSIS

IT IS A PART OF WHAT MAKES THEM UNIQUE

IT IS MERELY ONE COMPONENT OF THEIR LIFESTYLE

DO NOT DEFINE THEM AS A DIAGNOSIS BUT AS A HUMAN WITH
INDIVIDUAL TALENTS SKILLS AND INDIVIDUAL PERSONALITIES EMBRACE WHAT SPECIAL NEEDS INDIVIDUALS HAVE TO OFFER WITHIN SOCIETY

A DIAGNOSIS SHOULD BE USED MERELY TO INTERACT WITH A SPECIAL NEEDS INDIVIDUAL TAKING THEIR SPECIAL LEARNING STYLE INTO ACCOUNT.

A DIAGNOSIS SHOULD NEVER BE USED HOWEVER WITH THE INTENT OF HANDICAPPING AN INDIVIDUAL NOR DEFINING WHO THEY ARE AS PERSON BY IT.

Mari Nosal M.Ed

I am a published author and focus on books pertaining to autism and Aspergers Syndrome. I have had special needs articles published in several magazines. I have been interviewed several times in print, on pod casts, and internet T.V. regarding the autism spectrum. I have presented autism workshops to staff, management teams, and parent groups. I offer tips on curriculum development and behavior modification within the classroom and through in-services. I am 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. I have recently ventured into public speaking engagements to educate both parents and educators on autism and Aspergers Syndrome 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

I Propose Changing Autism Awareness Month To Autism Acceptance Year


Autism awareness, what does this really mean? Logos, colors and symbols that represent autism awareness are prevalent during the month of April. People equate the symbols with the autism spectrum. However, being aware that autism exists and comprehending what the autism spectrum is composed of, the challenges faced by families, children and adults who live with autism 12 months out of the year is a totally different and pressing issue.

For these individuals, autism awareness does not end when April comes to a close and all the symbols and autism awareness programs that are plentiful during April disappear and society at large goes on with their daily lives as autism awareness month becomes a distant memory in their minds. For individuals living with autism and those that love them, autism does not end in April. They are extremely aware that autism exists because the challenges connected with the autism spectrum are enmeshed in their daily lives. It is a lifestyle for them that defines how they live. Individuals who live with or have loved ones on the spectrum have gained awareness through experience. They perceive autism from the perspective of life experience which is quite different then equating a logo with autism and leaving it at that.

Awareness’ is resultant from knowledge. Knowledge can only occur through interaction with individuals and families on the spectrum and educating the public at large. People tend to fear the unknown do to lack of understanding. Through education and interactions fear is diminished and a level acceptance is created. Tolerance should not be an ultimate goal either as tolerance merely means that society tolerates a certain population. ie People tolerate mosquitoes at a cookout yet find them annoying at the same time. People on the spectrum and their families are human beings who should not merely be tolerated but accepted and embraced as meaningful members of society.
Lets create a society where autism colors and logos are equated with action. Support and seek to understand the challenges of those on the spectrum by spending time with them. If you are a neighbor of a family with a child on the spectrum, stop by their house with a coffee for the parents and visit them to chat for a while. These families often feel isolated, they often feel like outliers in society and would welcome visitors who wish to chat with them.

Take their child out to give parents a break. Encourage your own children to include kids on the spectrum in their play. Yes, even if your child must adapt their play to include a special needs child. In doing so you will teach your neurotypical child a life long lesson, respect for others differences. Offer to babysit so parents can spend much needed one on one time with typically developing siblings, spend time with their husband, or merely allow a sleep deprived parent to take a much needed nap.

An increase in educational programs would provide a venue to educate the public. Schools incorporating special needs education as required parts of their curriculum, parents attending required special needs presentations at the beginning of each school year to gain an understanding of the challenges facing kids with special needs and required in-services on a regular basis for educators. Perhaps students could be offered a course where they are paired up in class with a student on the spectrum which they mentor and engage in their activities throughout the year. I realize we have voluntary programs like this across the country. Considering the inclusive environment we live in, I would propose this special needs program as mandatory for graduation. It would prove to be a valuable as all kids will go on to work in companies with differently abled individuals as adults.

Aside from educating society on the challenges of families and individuals on the spectrum we must also shine a light on their capabilities. Everyone learns through experience not merely digesting factual information. Towns could start photography clubs, art classes, writing workshops, dance competitions that display the talents of people with challenges and their successes. Interview them in the local newspapers and display them as productive members of society, not merely individuals and families to be pitied. They do not want your pity, they wish for understanding and acceptance. Through this action, society at large will open a venue for society to understand and appreciate the talents special needs individuals embrace and not merely see them as being destined to be supported by society. You see, with your help they not only support themselves but live work and play side by side with neurotypical individuals who embrace them into society.
Education programs within colleges across the world would prove a prudent move to increase autism classes offered as mandatory within their curriculum. Schools and life in general is so inclusive no that there is an increased need in assisting future educators by squelching myths and misnomers and teaching the educators of tomorrow how to hone the skills that people on the spectrum posses. They are no different than you or I. They wish to live a fulfilling life just like anyone else.
Include individuals on the autism spectrum when offering presentations. After all, who knows what it is like to live on the spectrum than an autistic individuals themselves. Invite parents of special needs kids to speak at presentations. They have lived experience and would prove to be an asset providing knowledge and experience that cannot be found on Google.

Offer to drive an individual on the spectrum who has no license to school, the store, doctors appointments etc. Highlight the skills of an autistic individuals who may excel in math, English, science and more by inviting them to tutor a neurotypical individual who struggles in that subject. Remember, and individual may struggle with specific academics yet excel in others. By turning the tables we focus not only on their deficits but challenges as well.

I have performed acts such as sending 75 of my books to a developing country so parents and educators who otherwise could not afford my books were provided with the gift of knowledge. Nuerotypical authors of books on the spectrum could hone the artistic skills of an individual on the spectrum to illustrate one of their books, thus providing an opportunity for experience and employment. Allow someone on the spectrum to write the forward for your book. After all, if you are writing a book about the spectrum, shouldn’t you include someone with lived knowledge that a neurotypical could not possibly possess?

The opportunities to increase understanding regarding the autism spectrum is only limited by your imagination. What will you do to help someone or their family on the spectrum this year?

That said, I will wish you a happy Autism ACCEPTANCE YEAR. Please remember, the autism symbols, colors and declarations of autism awareness will become a distant memory on May first for those who do not have loved ones or live with autism. For those families like mine, autism is something we live 365 days a year. Remember to continue, advocating, assisting, attempting to understand those who live with and interact with those on the spectrum daily. These individuals do not get put in a draw in may to be released next April. They are your co – workers, neighbors, classmates and hopefully become your friend.
That said, I will wish you a happy Autism ACCEPTANCE YEAR. May we all grow, interact, respect and gain a better understanding and appreciation of one another this year.

From the heart of Mari Nosal M.Ed

I am a published author and focus on books pertaining to autism and Aspergers Syndrome. I have had special needs articles published in several magazines. I have been interviewed several times in print, on pod casts, and internet T.V. regarding the autism spectrum. I have presented autism workshops to staff, management teams, and parent groups. I offer tips on curriculum development and behavior modification within the classroom and through in-services. I am 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. I have recently ventured into public speaking engagements to educate both parents and educators on autism and Aspergers Syndrome
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

My thought about autism for today


 

Autism is not a communicable disease. Visit me in my world for a while. Get to know me. You may just find out that I am pretty cool.
This photo and post is part of the personal and private collection of Mari Nosal. It is not to be used without proper credit to the author.

What autistic loved ones,  family members and I would like you to know.

Autism is not a communicable disease. It is merely part of what makes me the one and only me. Come visit me in my world for a while. Get to know my family. If you spend time with me, you may just realize what an awesome person I am.

 

I am a published author and focus on books pertaining to autism and Aspergers Syndrome. I have had special need articles published in several magazines. I have been interviewed several times in print, on pod casts, and internet T.V. regarding the autism spectrum. I have presented autism workshops to staff, management teams, and parent groups. I offer tips on curriculum development and behavior modification within the classroom and through in-services. I am 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. I have recently ventured into public speaking engagements to educate both parents and educators on autism and Aspergers Syndrome
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


owers

Autism Awareness: Focus On The Reason Not The Color Of A Symbol


Autism awareness month is almost upon us. The inevitable posts encouraging people to light it up blue, gold, multi – colored and more have become plentiful. In my opinion, a color does not signify autism acceptance. Without action attached to the colored puzzle piece or ribbon it is merely a color.

The definition of the word awareness is defined as “Awareness is the ability to perceive, to feel, or to be conscious of events, objects, thoughts, emotions, or sensory patterns. In this level of consciousness, sense data can be confirmed by an observer without necessarily implying understanding. More broadly, it is the state or quality of being aware of something.” (Wikipedia encyclopedia)

Lighting it up blue, gold, multicolored, or green with zigzag imprints for that matter is not indicative of awareness. Awareness is merely the beginning of a process towards understanding. Individuals may witness the empire state building lit up blue and associate it with the word autism. However without understanding this will be the extent of their knowledge. They will gaze up at the blue light bulbs in awe. Individuals will than go out their business forgetting about autism awareness. Meanwhile, autistic parents and children will live with autism 24 -7.

For them autism awareness is everyday of the year. Autistic children will struggle to live with their challenges and attempt to gain new skills that will help them thrive. Parents of autistic children will continue to coach, cheer lead and support their kids day in and day out. For these parents awareness is sleep deprived nights caring for their children who awaken in the middle of the night screaming, stimming, occasionally harming themselves through their behaviors and more.

Awareness is not about a business creating an autism awareness sale for their wares in the same fashion that stores have fourth of July sales with the intent of selling merchandise yet forgetting the meaning of independence day. Sadly, I have witnessed this many times. “In honor of autism awareness check out our sale” If the merchandiser was honoring autism awareness in their sale they would be offering a portion of their sales to an autism fund, family or the like.

Awareness is developed through knowledge. Knowledge is acquired through education. Knowledge leads to understanding of autism. Understanding of the autism leads to acceptance. Only through acceptance can full awareness be developed. Rather than focusing on what color we should support. Focus on the goal. Acceptance, tolerance, understanding, awareness, and most of all ACTION. After all, isn’t the varied colors of a rainbow what gives it the majestic beauty it possesses. If a rainbow was one color, it would not be a rainbow. Isn’t the autism spectrum quite similar. Hence the reason it is called a spectrum. Like the colors of a rainbow, autistic individuals come in all shapes and sizes.

This ideal is present in society at large as well. The world is a melting pot of colors, nationalities, creeds and belief systems. In order to live harmoniously side by side we look beyond the colors and nationalities of our wonderful world in order to live harmoniously. Those who don’t unfortunately exist in a narrow-minded world indeed.

Move beyond the colors. They are merely symbols. Symbols that do not define a person. It is the actions of society at large that define us not colors. Obliterate the them and us mode of thinking and change that to WE. We argue due to our different modes of thinking and belief systems. Surprisingly, when we dig below the surface it becomes self-evident that when we combine those differences as a team and embrace our varied mind – set we make larger contributions to the ultimate goal. That goal is to open up societies eyes regarding the autism spectrum.

Rather than focusing on what color to follow. Harness that energy in a more productive manner. Make it your goal to step out of your box and out of your comfort zone today and everyday, not merely in April. Offer to watch a sleep deprived autism parents child while they take a nap or spend time with their spouse or other children. Cook a meal for the family of a child with autism. For a parent with a child that has autism who has dealt with a bolting child, items thrown all over the house , or dealt with several meltdowns and more. Your effort will be appreciated. I can confirm this statement as I am the parent of an adult on the spectrum. Spend the day volunteering with autistic individuals or families and get to know them. Assist an adult with autism who cannot drive by offering them a lift in your car. Volunteer to tutor young adults in life skills and academics. These are merely a few things that can increase awareness.

Image result for autism rainbow

So wear any color or logo that you wish but remember the reason behind autism awareness month and do not lose sight of that in an effort to become a sheep following a herd. Long live the prism of the rainbow.

Written from the heart of Mari Nosal M.Ed.

I am a published author and focus on books pertaining to autism and Aspergers Syndrome. I have had special needs articles published in several magazines. I have been interviewed several times in print, on pod casts, and internet T.V. regarding the autism spectrum. I have presented autism workshops to staff, management teams, and parent groups. I offer tips on curriculum development and behavior modification within the classroom and through in-services. I am 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. I have recently ventured into public speaking engagements to educate both parents and educators on autism and Aspergers Syndrome
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 & Linda Mastroianni of Speaking Autism: -Sharing your child’s information on line, how much is too much?


 

Mari Nosal M.Ed & Linda Mastroianni of Speaking Autism: Sharing  Your Child’s Information Online – How much is too much?

 

Mari Nosal M.Ed : I have had the honor of interacting with Linda Mastroianni of Canada for quite a long time. I perceive her as not only my cheerleader and inspiration, but a great friend as well. Through conversing and sharing successes and challenges regarding our sons it became evident that despite me being a U.S.A. resident and her being Canadian, our challenges are similar and span over the border.
I decided that it would be a wonderful idea to share our experiences and different talents to write an article that exemplifies the issues facing children and adults on the autism spectrum.. In doing so, our hope is to express the need for understanding, respect, and acceptance for children on the spectrum. We hope to speak for those who have no voice for themselves. I also hope a sense of awareness and unity is resultant from our collaboration effort and people understand that our issues are worldwide.
Thanks Linda for collaborating with me on this article. I am honored.

As I peruse social media sites, photos of children and private information regarding the children’s lives are plentiful. The internet and social media has provided a public platform for parents to share their parenting experiences and their children’s private lives. This generation of children is the first in history to have their quirks, antics, illnesses and more posted on such a public media platform. Sadly, this is done without the child’s permission.

I have witnessed more than I care to imagine, photos of children on social websites. Photos of 8 or 9-year old children with a photo of their buttocks exposed on website groups by an inquiring parent who seeks advice from others (strangers) as to what they think the child’s injury or rash is. I comprehend that parents are seeking social support but this advice should be sought from a physician not a public website. I have read stories where parents speak about their school age child’s wetting the bed, post photos of actual letters for suspension from school and bad report cards. Parents use their child’s real names as well.

How would adults like it if their child posted private information regarding a job they just got fired from, a spouse who cheated on them, posted photos of an inebriated parent and more without the parent’s knowledge or blessing?

A deleterious result of this over-sharing of information goes beyond the fact that it can be seen and shared by people we do not even know. A comment made on twitter , tumbler, Pinterest, Google+, Facebook and more can be re-shared via sharing flash screen photos and more. All social arenas are ripe for a deviant to find them and identifying facts about the child.

Deviants aside, the child themselves may be devastated by comments and photos regarding them that parents of shared without their knowledge. In regards to special needs parents, the repercussions can be dire. A special needs child who has difficulty fitting in with peers may experience difficulty that are threefold if a peer or peers parents happen to read private information regarding your child. A bed wetting story, a story regarding the table your child broke during a meltdown etc. may become food that fuels a metaphorical fire that provides bullies and society at large with more fuel to use against your child. Your child may lose trust in their parents as well, resultant in refusing to confide in their parents in the future out of fear that the child’s personal information may end up in the public social scene for the world to view.

 

Please remember that the internet era has created an era of archived information that will be available on the internet universe for eternity. Information is encoded and archived for access by anyone who comes across it. A frustrated parent may deem photos of the aftermath of a special needs child on the spectrum smearing feces on themselves and around the house appropriate. How will this child feel years from now when they find these photos of themselves posted publicly on the internet years after they are potty trained and this behavior has been extinguished? This is one mere example. Food for thought: special needs children and all children for that matter are extremely adept about maneuvering their way on electronic devices.

Now that I have elucidated my point, lets focus on the fact that we are disrespecting our children’s rights. Special needs children have rights as well. The fact that they are challenged by developmental or intellectual feelings does not negate the fact that they possess feelings. Your child struggles enough to maintain dignity, self-esteem and feeling like a worthy member of society. Rather than increase their sense of positive self efficacy, they will be emotionally shattered. Every child will become an adult one day.

As blogger and author, I often refer to certain selective experiences that my son has lived through. Before I divulge information regarding him, I ask for the parameters he would like me to abide by. Hence the reason I never use photos of my son nor divulge his real name. He gave me his blessing to talk about specific instances and experiences. My son requested that I do not share his photo publicly nor mention his name. I have done so on his behalf and my respect for his wishes as an individual. If my son wishes to divulge his challenges publicly, that is his choice not mines to make.

Sure, we can request that information be deleted from Google and other sites. However, it is impossible to ever delete all of it. Thus, identifying information will be available long down the line to future employers or anyone seeking information on your child. Your child has a right to create their own social story as they grow. We as parents have a job to protect, nurture, and guide our children; we do not have a right to decide what their narrative will be. That is up to them. We possess the right to screen how much society learns about us as adults. Our children deserve that same right.

Show your children respect for personal boundaries and they will grow up respecting the rights of others as well. Our children become what they see parents do plain and simple. Please search and interact on social media wisely and responsibly. Your children depend on it. Remember, those thirty people who you tweet a personal comment to may hypothetically have 30,000 followers who see your tweet. Their friends may re-tweet as well. Thus the numbers of individuals who read your tweet will continue to grow and you will never know.

Parents, It is a frustrating path bring up children with special needs. Sharing information on social networks is a common activity that we have all partaken in. We have all shared family milestones, successes and the like on social media. This is perfectly acceptable. However, we need to be cognizant of boundaries and know when sharing information has crossed over an acceptable line. Certain information is acceptable to share with public eyes. Other information is not suitable for public sharing and should be kept within the confines of your home.

No matter what their ability level is, children will grow up and move forward. Some will live independently, obtain gainful employment independently or in a supported environment, some will live in group homes or supported living. All children  will inevitably become adults and the majority move on with their own lives separate from parents. They are in our lives for a short time.

Children are not personal extensions of their parents. Our identity should not become enmeshed in the child’s. Parents assist children in honing their own identity. We do not become that identity and live our lives vicariously through the children. As parents, we must always recognize the fact that our children are separate individuals from us and their individual identity, personality, individuality and feelings must be respected at all times.

Parents can become stressed and need to vent. If you feel as though you have reached the end of your rope, there is confidential assistance. Please check out the website links that I have provided that support special needs families.

Parent Sites – Support for Families of Children with Disabilities

https://www.supportforfamilies.org/internetguide/parents.html

Special Education Resources and Links for Parents and …

www.specialeducationguide.com/…/support-and-resources-for-parents-a.

Written from the heart of Mari Nosal M.Ed

I am a published author and focus on books pertaining to autism and Aspergers Syndrome. I have had special needs articles published in several magazines. I have been interviewed several times in print, on pod casts, and internet T.V. regarding the autism spectrum. I have presented autism workshops to staff, management teams, and parent groups. I offer tips on curriculum development and behavior modification within the classroom and through in-services. I am 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. I have recently ventured into public speaking engagements to educate both parents and educators on autism and Aspergers Syndrome
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, as 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

Linda Mastroianni of Speaking Autism :

In our second collaborated piece, Mari and I continue to work together to raise awareness and acceptance about autism along with the challenges that many children and adults face on a daily basis. We hope that our collaborated efforts will resonate with others.
Thank you Mari for this wonderful opportunity.

As a blogger and autism consultant, a great deal of what I do is on-line; I blog about my life and that of my teenage son with autism.
The whole purpose to starting my blog and my consulting business was to raise autism awareness, foster acceptance within the community, help families and individuals living with autism and to be a voice for my son until the day he can advocate for himself.
Social media has become a very powerful platform. People share their stories and offer brief glimpses into their lives. They share their anecdotes, their knowledge and their passion.

Some have taken to post many photos of their children while talking about a certain topic or story that is relevant to their blog/website/social media page.
But at what point does “sharing” become “intrusive” perhaps even a violation of the child’s right?
I am no different. I share our story of what life is like for us living with autism. But I heed extreme caution to what I share. I constantly take pictures of my son and every single one that I take makes for a great post, a valid point to the constant struggles we face with autism along with our triumphs and joys. However, as soon as I take the picture my son asks to see it and 90% of the time he’ll say “don’t put that on the computer”, so I don’t. On the occasion that he’s okay with it he’ll say “that one is good”. Whatever I publish on my blog or post on social media, it is always with his consent.
There are many parts of our story that will never be mentioned mainly because our story is really his life and keeping his integrity and respect intact is more important to me than raising autism awareness. I can still raise awareness in a myriad of ways.
While I consider this blog and my social media page mine, they are all about my son. If tomorrow he would ask me to throw it all away, no more pictures and just delete everything, I would do it in a heartbeat.
Children have their own identity and showcasing them in our personal social media pages without their consent or knowledge can have serious consequences in the future. The images and videos that are shared on social media without their consent can come back to haunt you but more importantly can come back to haunt them.
Children grow into adults and regardless of their challenges nobody can predict what the future holds for them. Many children with special needs have grown into independent adults, working and contributing to society. Some never become independent and need continued support and assistance throughout their adult lives. Regardless of where they fall in terms of challenges or special needs, they are worthy of equal respect as anyone else.
It would be unfair for them to have a history of photos about their challenges chronicled online without their consent. Imagine a potential employer doing a Google search and uncovering some of these images that this person had never consented to. It’s a slippery slope to climb.

Now I’m not talking about the family photo at Thanksgiving or the picture of a bunch of friends celebrating. I’m talking about the photos that put the person in a very vulnerable and compromising position without their knowledge. I have seen photos posted of children taking a shower in an effort to demonstrate how well their child is doing with their independence skills. While the event itself is a huge milestone and definitely one worth sharing, one has to question if the photo attached to the post was necessary.
Unless the child can appropriately approve and completely comprehend what is being posted on line about them, I believe posting very sensitive images without their permission is wrong.
While the images provide a more profound visual impact, words can be just as damaging. Unwise comments written in a moment of extreme fatigue and overwhelming emotion can have long lasting effects.
Everything that is posted on social media pages can then be re-shared a million times over. It is impossible to control who can and can’t repost something once it has been done. So the image of the child that one believes is just being shared with a few of their friends can actually be re-shared by total strangers all around the world. One needs to be certain before putting anything on line if what they are about to post is something they would be comfortable seeing on the front page of a newspaper. If the answer is no, then it would probably be wise not to share it at this moment.

The digital foot print left behind lasts long after one has stopped their online sharing. While there are measures that can be taken to start deleting ones digital foot print, it is impossible to completely delete everything because you don’t know who has re-shared or even saved the images originally posted.
I honestly believe that when people share too much information they are doing so with the kindest of intentions without realizing what they’re doing. I believe they want to share their experience with others in an attempt to offer support, to give a chuckle, to connect with others and even to get some advice. While there is nothing wrong with offering support or getting advice we must always remember that the privacy, dignity and respect of the children is what is most important.
Thanks for stopping by…

Linda Mastroianni
I am founder of http://www.SpeakingAutism.ca and contributing blogger for Huffington Post Canada.
I provide support, resources and information to families and individuals living with ASD. I am also a certified life coach specializing in autism, blended families, divorce and remarriage.
I have two sons with autism spectrum disorder and I have over 19 years’ experience with autism.
My unique background and personal experiences puts me in a very good position of understanding the challenges my clients face on a daily basis, as I have gone through many of the very same issues. When my son was diagnosed with autism almost 15 years ago, my world was turned upside down. There wasn’t nearly as much information back then as there is today. I felt alone and isolated.
Today I’m helping families so that they don’t feel isolated or overwhelmed. I want them to know that they are not alone.
I have been an active advocate for the education of special needs children that includes a well-developed IEP program. I have been part of the school governing board for many years and have attended and assisted in numerous IEP meetings.
I share with you my techniques to strive for a positive attitude, to live and not just survive and most importantly, show you how you can live and thrive with autism.