I am just a parent. This statement is echoed by special needs parents worldwide. Just a parent you say? I wish to form a rebuttal regarding that statement. Parenting special needs children is one of the most difficult jobs in the world, and yes, it is a job. A job that has no set hours. Job requirements to be a special needs parent require a willingness to be available to their child 24 – 7. Responsibilities include availability to work under pressure; sleep deprivation, putting a child’s needs ahead of your own, and ingesting large amounts of coffee…extremely large amounts of coffee. This job has no end date and quitting is nonnegotiable.
No one can fill your role as your child’s most important advocate and cheerleader. You may occasionally wish to run for the hills while mumbling unintelligible sounds and pulling your hair out of your head. However your kids need you and running for the hills remains a figment of your imagination living in the confines of the mind and never truly acted upon. You fall down and get back up every day of the year. Reason being, you are fierce protectors and advocates of your offspring. Backing out on your kids despite bags under your eyes, and an occasional zombie like demeanor from sleep deprivation is not an option.
You are fueled by a fierce non – judgmental love for your kids. You see through your child’s deficits and understand the child with promise who resides beneath. They are children with needs just like other kids, a wish to be loved, included and most of all accepted for their disabilities and talents combined.
True, parenting is a difficult task for any family. For special needs parents, society can take for granted how difficult it is for them to balance all of their responsibilities everyday. A parent who’s autistic child requires constant supervision at an age when other children can be left to their own devices my not have the luxury of taking a shower, putting on makeup, cleaning the house or another related tasks for that manner until their spouse returns home for the day.
If a special needs parent is single or lacks social support they may not be able to tend to their own needs and responsibilities until their children are asleep. Hence, working into the wee hours of the night to accomplish task that parents of typically developing children take for granted and complete during normal daytime hours. Thus ensuring the parent with neurotypical children a full nights sleep. Sleep that is deemed a luxury by many special needs parents.
These parents must put their own needs aside to monitor an autistic child with no sense of safety from bolting out the door when they turn their back, keep their child from self harming, shadow a child with pica all day to ensure they do not eat non edibles, monitor a child with medical issues such as seizure disorders, feces spreaders, kids with compromised breathing issues and more. In these and many cases turning your heads for even a moment could be a life or death situation for the child. Why do I understand your plight? Because I am not only a professional educator but a special needs parent of an adult son.
Googling and studying special needs and claiming to be a specialist does not suffice.. I possess a bachelor’s degree in psychology and Masters degree in education. My degrees providing me with academic knowledge and application of said knowledge. However, my kids have been my best teachers, equipping me with experience that did not come from my books. Kids do not appear out of manuals. Professionals who do not have special needs children, have the ability to leave work behind at the end of the day.
They may stop at a restaurant and possibly have a drink with friends to vent about their day. I and other special needs parents had and have no such luxury. If we work outside the home, special needs parents goes home at the end of the day to start their next job which is caring for kids who cannot care for themselves nor speak for themselves. I will re-emphasize, special needs kids often require care that their neurotypical peers do not due to medical, physical and emotional delays. Special needs parents often have to accept that their children may never posses the skills that the Jones child down the road has.
Special needs parents are your neighbors, co workers, professionals, and everywhere within society at large. Special needs parents and parents with typically developing children coexist side by side.
While focusing on creating behavior plans, the I.E.P. , social groups, development of independent living strategies for special needs children, parents needs and input can get put to the wayside. Parents’ needs and involvement in the child’s development are neglected not only by professionals and society, but by special needs parents themselves.
Parents are the strongest and knowledgeable advocates regarding their children’s welfare and emotional well being. It would behoove professionals to seek them out for input. Parents do not underestimate the impact you have on your child’s life. Speak out to all involved in your child’s life, be it professionals, friends or family members. Your input is valuable. Feeling isolated, guilty, anxious, and even useless at times like a speck of dust on the wall can create feelings of low self-esteem. Please hold your heads up high, be proud of your accomplishments.
Your job is the most important in the world. You are in charge of creating an environment that will ensure your child’s optimum growth and independence that is feasibly possible for them. I will emphasize here that optimal growth is contingent on optimum development that the child is capable of. Not parameters set out by parents and society……. Their time frame, their pace, not ours. Perceive your responsibilities in this fashion. Many employees would quit a job at the first hint of half of the challenges special needs parents are exposed to. Unlike the employee, you do not quit and cannot quit. You go on and forge forward each and every day fueled on your fierce love for the kids, although the pay stinks.
From my perspective, special needs parents are silent heroes. Through your unselfish love and constant guidance for your special needs children, society is provided with a gift. You are role models who display the purest meaning of altruism. You see your children like a diamond in the rough. Diamonds are black and unattractive when harvested. Yet after intense polishing a shiny diamond resides below the dark black coating. Like the diamond you see the beauty and greatness in your children that resides hidden within the disability. Through you, society can learn how to perceive the beauty that lies below. If I possessed the capabilities to do so, I would provide all special needs parents with an award for being societies warriors.
To parents with typically developing children I request one thing from you. If you run in to a special needs parent while going about your day, notice the strength, unconditional unselfish pure love they possess and strong will. If they feel defeated, noting what an inspiration they are to those who have the miracle of witnessing their actions first hand will remind special needs parents to hold their head high and walk looking straight ahead. Because special needs parents have the most important job in the world. They are parenting the next generation of adults. The kids will thrive because YOU special needs parents have the unique ability to see the humanness of your children look beyond what others in society would consider deficits and focus on the positives in your kids. Believe in your children and they will believe in themselves. HMMMM……perhaps special needs parents abilities to see not only deficits but positives is indicative of individuals who embrace the world with a seventh sense that many in society do not possess. Perhaps some in society can be judgmental and they possess a larger disability than special needs children, blind eyes.
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 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 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 http://tinyurl.com/kdspqy9
Mari Nosal M.Ed.