Learning To Find The Beauty In The Fears Of Raising Autistic Children
As a parent we are never prepared for the uncertainties that come along with raising our children. I remember the day that I found out that I was pregnant with my oldest son. I was 18 and I assume that the fears that flooded in were mostly normal trepidations, but still doubts nonetheless. I feared that I wouldn’t be a good mother, that I wouldn’t be able to provide the right guidance for him. I feared the absolute colossal upheaval my life was about to go through.
Of course, I was excited and looked forward to motherhood, but I was still petrified. When he was born those anxieties tripled. Here I was with this little human being that I was responsible for. I was determined to do right by him. Then, shortly after he was born he started having seizures and was placed in the N-ICU. From there it felt like a whirlwind. It didn’t stop with that though. I was about to learn true fear as he didn’t develop as a child should over the first 3 years of life. That’s when I first heard the word Autism.
With the diagnosis of Autism came a whole new world I had to learn to navigate. A whole new set of fears that I would experience as opposed to those that I originally had when he was born. Not only did I still have the “normal fears” that came along with becoming a parent; I had a whole new realm to learn and a whole new set of fears to face. He was a bit abnormal from the start, which added to my fears- was I doing something wrong? As a baby he beat his head during tummy time, he would scratch his forehead to the point of it bleeding; and, he was violent to himself and others as a toddler. He beat his head on everything all the time and had zero eye contact. I often wondered if it was a shortcoming of mine that was causing his behavior. That’s when we finally got into a specialist and I started to learn about Autism.
Still though, even with a specialist and therapy he still couldn’t speak. He didn’t even have echolalia’s until he was 5 and no real speech until he was almost 7. All the fears I had of being able to provide what he needed intensified ten-fold. I feared he would never calm down and stop beating me up every time something changed in his environment. I absolutely was petrified that he would beat his head on something to the point that he would hurt himself seriously. A fear that was almost realized when he was two.
I was awoken to the sound of him beating his head on his bedroom wall. Just three hard hits before I made it in there and he had split the wall all the way up to the ceiling; and half way across the ceiling, alongside leaving a 2-liter bottle sized hole from his head. I feared for his safety. We had to put a helmet on him. A move I had never considered when I became a parent. Who gives birth thinking that their child is going to be an uncontrollable toddler and a danger to others and themselves? We give birth thinking our children can and will do no wrong; sometimes when reality smacks us in the face it smacks us hard.
Around the time he turned 2 I found out I was pregnant again. A whole new set of fears set in. Would my oldest son accept my newest baby? Would he hurt him? Would he socialize with him? Play with him at all? Would my newest baby have abnormalities as well? As it turned out- he did. Having two children with Autism has really opened my eyes to the fears of special needs parenting. Elopement, strangers, meltdowns, doctor’s appointments, school meetings, homeschooling two special needs children, setting up a proper routine, Occupational Therapy, Speech Therapy, their cognitive levels once they hit adulthood; the fears I face seem endless.
I also feared for them socially as they grew. A fear that is still real for me. When they were smaller I feared that they would never look me in the eyes or others. I feared that they would never be able to function in a school setting with their peers. That they would be the target of bullies their whole lives because of their idiosyncrasies.
You see, real fright is more than simply fearing your own inadequacies as a parent. Terror is genuinely not knowing if your child will ever live on their own, if they will ever develop relationships with others that are genuine. Fear is having an Autistic child and knowing that you can’t live forever when you really need to be able to. Anxiety is facing the unknown amongst a world of doctors that are still figuring things out. Fear is knowing that your child is an experiment to some extent.
Every course of treatment that we choose is a game of hit or miss. We never know if it’ll really work and much of the time it requires multiple tries to find the right medication. That’s fear. Having to give your child medications for them to be able to function and not knowing if they are going to work or if they will do long term damage. It seems fear is subsequent to being the parent of a special needs child. We fear everything.
My point is, we all have fears as parents. Every fear has an answer that accompanies it, I promise you. Granted, special needs parents have more deep-seeded fears than a normal parent, and that is perfectly normal. Each fear still has an answer and each develops character in us as parents. Whatever your fear is- know that it is normal to fear the unknown in the world of Autism. Just remember that other parents have fears too. None any less valid than the next.
That is what parenting is- learning as you go and always wondering if you made the right decision. Those uncertainties will evolve as your child ages- as I imagine any normal parents’ fears evolve. With my oldest son, I still often wonder if he will ever be able to live on his own and if he will socially fit in as an adult in this hard, cruel world. Will he marry? Have children of his own? Will I prepare him adequately to take care of himself after I am gone? He stills needs me for just about everything at the age of 14. My youngest I don’t worry so much about. He is higher functioning and I do not foresee any long term extreme issues with him.
One thing is for sure though, through all my fears over the last 14 years I have learned one point. Fear is a beautiful thing sometimes. Through it we learn to appreciate the smallest things in life. The first time my son made eye contact with me I cried my eyes out! I still cherish that day. To most parent’s eye contact is no big deal. Their child has it from almost the beginning. I feared to no end never experiencing eye contact with my children. Like most parents of Autistic children, I fought for my children’s eye contact. I will always cherish the moments when they look me in my eyes.
Not only that, their first words were hard fought for and that made them even more bittersweet when I heard them. My biggest fear for almost 7 years was that my son would never speak. That I would never hear his voice. I am happy to say that through embracing that fear and facing it my son learned to speak and is still verbal to this day. That doesn't take away from the fact that every step my oldest has taken in life has been hard fought for and entailed great fear from me; each moment worth the trepidations that accompanied them. So, with that said, I think that maybe it’s time we start embracing our fears as the parents of Autistic children and not let them hold us back. Search for our answers to our fears and face them. Don’t let them hold us hostage. Maybe, just maybe, it’s time to appreciate the fears that accompany parenthood instead of dreading all of them. Maybe we should celebrate all our courage in living this life instead of groaning about it!
As Nelson Mandela once said, “I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.”