Until I became the mother to an incredible son with autism, I had always associated courage with someone who exudes great bravery, like running into a burning building or pulling an injured motorist from their mangled car to safety. Being courageous is actually having the moral strength and quality of spirit to face difficulty and persevere. That clearly defines the daily life of my son, Skyler, and every member of an autism family. As we travel this often-lonely autism journey, we are provided the unique opportunity to learn the true definition of courage and strength, narrated through the eyes and experiences of our autistic child.
From Skyler’s first moments of life, he demonstrated the will to fight. With an IV line coming from his forehead and several monitor leads on his tiny chest, he appeared so peaceful and calm as he soundly slept.
Seated closely to his phototherapy bed in the ‘special care nursery’ as he wrapped his bandaged hand tightly around my finger, little did I know how symbolic that moment would be for years to come.
From that day forward, I have loudly advocated in his honor and purposefully fight alongside him as we seek answers and clarity. All the while, he graciously holds my hand and serves as my tour guide through this autism corn maze.
I like to imagine that Skyler wakes up each day without a worry in the world and is excited for the new adventures that await him. In reality, I know that the slightest change of routine, introduction to a new practitioner or therapy program can send him into immediate panic and fear.
During these moments, Skyler requires significant amounts of mental planning and preparation that only he can provide for himself. My assistance is limited to encouraging words and patience while he reassures himself that he can conquer this.
I never doubt his abilities because he is brave, determined and has always persevered when the deck seems stacked against him.
There are countless moments each day where he rises above ignorance or his own personal hardships to illustrate true courage.
Skyler demonstrates courage when battling the restless movement of his body as he attempts to focus and be attentive.
Skyler demonstrates courage when venturing into a public place unsure of what sights and sounds may trigger him and make him uncomfortable.
Skyler demonstrates courage when attempting to communicate knowing that we may never understand what he really needs or wants.
Skyler demonstrates courage when he trusts that the medical interventions we implement are out of love and support to give him the best quality of life imaginable and relieve his pain.
Skyler demonstrates courage when ignoring the stares and puzzled glances of other restaurant patrons as he receives assistance using utensils and eating his meal.
Skyler demonstrates courage and patience when people underestimate his intelligence.
Skyler demonstrates courage, perhaps sadness as well, when negative comments and absolutes such as “he’ll never talk” are made about him, in his presence.
Watching your child seemingly suffer and endure exclusion is nothing a mother willingly signs up for. Becoming a mother requires great sacrifice, unconditional love, unlimited patience and a whole lot of courage to trust your instincts and accept situations for what they are. When you are parenting a child with autism, each of those requirements quadruple.
As an autism mom, it is my lifelong job to never settle for second best, never accept defeat and always stand my ground – particularly where my son is concerned.
Over the last 17 years, I have gained incredible perspective about my strength, resiliency and the power of my voice… all from observing and interacting with Skyler.
Courage as an autism mom means letting go of MY expectations for my son and identifying every victory, big or small, that brings joy to all of our hearts.
Courage as an autism mom means trusting my gut and fighting for my son no matter the cost.
Courage as an autism mom means never giving up on helping him achieve his full potential – whatever and whenever that may be.
Courage as an autism mom means battling the insurance, filing the appeals and insisting my child’s health & well-being is worth the extra five minutes of their time.
Courage as an autism mom often means sacrificing sleep, an immaculate home, date nights and vacations with the confidence that this phase won’t last forever.
Courage as an autism mom means being highly visible at his school or therapy center and not being afraid to ask questions or challenge the IEP / behavior plan. Frequently showing my support and appreciation for everyone who loves my son lets them know we are a team and gives me peace of mind that he’s in safe and caring hands in my absence.
Courage as an autism mom requires kindness, patience and restraint from screaming and yelling some not very nice things – particularly when the noise is unbearable, the aggression causes destruction and countless household accommodations must be made because my son can’t keep his hands to himself.
Courage as an autism mom means carving out some ‘me time’ and focusing on my mental health even when I feel guilty doing so.
From the day we locked finger and hand, I knew that tiny, peaceful son of mine would make a huge impact on the world. Skyler is wise beyond his years and has overcome more in his 17 years of life than I can possibly relate to. Having a child with autism hasn’t made me an inferior mother – perhaps, it’s made me a more courageous one. I feel blessed that Skyler chose me to walk side by side with him through this incredibly eye-opening autism journey.
*As Featured on TODAY Parents 2/22/21