Parenting a child with special needs to adulthood has been fraught with a hodge podge of ambivalent feelings. Bringing up a child with Aspergers syndrome and co-morbid challenges has provided membership into a club that I did not choose to join. I choose to call it the club for special families. My choice of special families for the title is because having special needs children affects the whole family. Children, parents, siblings and others struggle with individual 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.
I possess a Bachelor’s 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, tt 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.
While performing my functions within my classroom and other professional responsibilities provided me with a set time to go home and leave behind the professional world of special needs, my parenting responsibilities do not. Parenting special needs children requires a 24 – 7 commitment which has no end date. Young children require constant assistance in assisting them with acquiring skills that will provide them with some semblance of normalcy as they grow. Parenting special needs kids into the world of Adulthood will provide parenting challenges as well , while attempting to jettison them down the road to independence.
We deal with challenges that parents of neurotypical children take for granted. When our children have a meltdown the size of an earthquake that could register a 7 on the Richter scale in a public place our self-esteem can be torn apart in a nano second.This holds even more truth when the child’s meltdown is not appropriate for their chronological age. Individuals who witness our children’s behavioral issues may give parents dirty looks, ask them why they cannot control their child or worse (and yes I have heard this comment, (“What your child needs is a slap”)
It is not easy to have free time as babysitters are difficult to acquire. Our child’s special challenges which may be medical, behavioral, intellectual or emotional can cause caretakers to refuse care so parents may have a moment of respite with their spouse or one on one time with other children. Money is generally in short commodity as therapists, physicians, special diets and more can command the brunt of a parent’s income.
Special needs parents and their children have the same needs as other families. We want and attempt to be attentive to our children thus providing them the best parenting and opportunities that we can. Both special needs children and parents seek acceptance, support, understanding, tolerance and friendship just like any other parent or child. Thus, It would behoove parents of neurotypical children to learn about our families rather then ostracize special needs families like they have a communicable disease. You cannot catch special needs like a disease. Who knows, once you get to know them you may like them.
Without a doubt another special challenge for special needs parents is watching other children develop on an age appropriate timetable while your child lags behind. This is a heart wrenching issue for parents of adults as this is a time when the lag between chronological age and emotional/physical development is extremely noticeable.Other young adults are getting married, getting the jobs of their dreams and moving down the road to independence while the special needs adult lags behind. A myriad of emotions may arise, low self-esteem, self blame, sadness, envy of other families, self-deprecation regarding your parenting skills.
At this point allow me to emphasize those special needs children will develop. However it will be on their own time frame, to their own level of growth, on their own terms, not on the ones that we as parents define for them.From the perspective of a parent that has and does walk the walk of special needs parents, please heed this advice. Do not worry where your children will be in twenty years. Focus on where they are today, at this very moment. Do not focus on what they cannot do, focus on what they can.
Instead of looking into the future and worrying about what will be, look into the past and look at what was and what is. Focus on the strides your child has made. What you note in terms of growth may not be large bursts of growth. They may be taking place in baby steps, in your child’s time frame and on their terms. Please remember that all the baby steps will eventually be indicative of a new noticeable skill.
On the days when you feel like you have failed your children as a parent, you feel alone and like no one understands you, when you are of no use to your child and you want to help them but it is as if your hands are tied behind your back please remember this. NONE OF THESE FEELINGS ARE TRUE.
You are providing the best care, love and assistance to your child as is feasibly possible. You did not cause your child’s challenges. By providing your child with constant support, your love, guidance, and yes even the fact that you worry; this is proof of what a wonderful and capable parent you are. You love your child unconditionally, challenges and all. Kudos to all of you.
On a positive note, despite the challenges special needs parents deal you are a better person for having special children. Your priorities are less materialistic and more spiritual. You appreciate development in your children that neurotypical parents take for granted. You have learned to be more accepting to mankind because we gained an awareness of human fallibility through our special children. You have gained emotional strength by taking care and advocating for children with challenges. At those moments when you thought that you could not go on you have.
You and your children are an asset to society for you are role models and educators for society at large. Carry on, hold your heads up high and know despite having one of the toughest and lowest paying jobs in the world you never back down. You are warriors and do not walk alone.
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 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. CECE
Thou shall not avoid my family. Autism is not a communicable disease. It’s a way of life. (Mari Nosal)