Summer days are waning and will soon be replaced by the crisp fall air. The outdoor temperature will gradually become cooler and we will 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.
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
As the New Year approaches, it is human nature to review our misgivings. Perceived character flaws and negative habits are scrutinized as the year draws to a close. Change can be positive and assessing areas to restructure within our lives is definitely important. Unfortunately, focusing on the positive aspects such as goals accomplished, strides already made within our lives, emotional and spiritual growth within us is left on the back-burner. It is common to focus on what needs to be fixed then what does not.
In regards to parents of special needs children, this is commonplace. Parent’s work 24 – 7 to support their children’s development, medical needs, social and emotional needs, special dietary requirements and more.As the children struggle, parents seek ways to assist their children’s growth, development and most of all, happiness. Their children’s challenges are their challenges as well. Special needs parents wish for happiness and success in their children’s lives just like parents of neurotypical children.
For special needs parents, the road is a bit more daunting but the same parental goals for children are universal nonetheless. Parents of special needs kids self-esteem can get bruised through noting children’s physical and emotional delays, behavioral challenges and comparisons to typically developing children.Constant self scrutinization of parenting skills can be resultant in negative self efficacy. In other words, we can carry a negative self-image into other aspects of our lives. This may affect how we see ourselves as a person within society at large. When our children do not meet developmental markers on time, parents tend to personalize this as poor parenting skills when this is not true.My goal this year is to establish a new personal resolve. I challenge other parents to join me. Let’s focus not only on what is wrong within our lives. Focus on what is right as well. We all have areas where change and growth is necessitated. However lets remember that “to err is human” and non of us are infallible.
New Years Resolutions:
1) I will celebrate my child’s strides and not merely focus on what he/she cannot do. (YET)
2) I will acknowledge that I am a separate person from the rest of my family with individual needs. 3) I will remember that occasionally embracing my self and remembering my talents and achievement’s is beneficial to the whole family. If I cannot accept myself, I will be too emotionally burnt out to make positive contributions within my family.
4) I will look in the mirror every morning and evening and recite this mantra three times. I will recite this even on my most challenging days when nothing seems to go right. “I have tried my best today. My best is all I can offer for I am merely human.”
5) I will learn to ask for help from others and accept it graciously from those who offer. I will accept the fact that bringing up a special needs child is a task that takes a village. I am not wonder woman or superman. I cannot perform every function and responsibility alone.
6) I will avoid self-deprecating remarks and learn to accept compliments from others without deflecting them. Special needs parents are more than worthy of praise and worthy human beings.
7) I will rejoice in the part I played in helping my child reach milestones, even baby steps. I will not merely focus on what did not work. Most importantly, I will remind myself of what is out of my control despite effort and measures that I applied.
8) I will learn to laugh at what is unresolvable and attempt to be less of a perfectionist. Laughter is the best medicine, even in the direst circumstances.
9) I cannot control the fate of others nor mold the total outcome of their future. I will attempt to remind myself of this daily. Thus, accepting the reality that I cannot fix other people.10) I will be open to change in my life and changing myself within realistic parameters. I will embrace what is already good and right within my life as well.
I hope you will join me and resolve to embrace yourself this New Years. Accept yourself for the wonderful person you ALREADY are and the contributions you make to your family and society at large. Be open to change but also note your positive attributes that we tend to miss.
Most of all hold your head up high with pride as you venture out and about this year.Happy New Year: and a wish for positive growth, happiness and success. Do not let life define you. Make sure that you define your life.There is a light at the end of the tunnel if you just look hard and far enough
About The Author: (Mari Nosal M.Ed CECE)
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.tinyurl.com/kdspqy9I 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 ventured into public speaking engagements to educate parents , educators and society at large about autism and Aspergers SyndromeI 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 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/kdspqy9If you would like to know more regarding my inspiring journey which led me to become an autism advocate, participate in international interviews via internet, pod casts and more, published author, and blogger