As we recognize the month of April as Autism Awareness Month, I felt it befitting for all the newly minted mothers whose children have been diagnosed to share a simple thought, YOU ROCK!!!! We commissioned a calendar that expresses how we as mothers feel, month is May and the picture is entitled FUNKY, in a good way. We hope the calendar shares hope and inspiration is many ways!
The words that change your life…”Your child has autism“. They tie mothers together in a way that others can’t really understand. Because autism crosses all social, economic and cultural boundaries, autism moms come from countries all around the world and all walks of life. I’ve met autism moms on Facebook, in autism support meetings and in school. Some are acquaintances, and some I am honored to call close friends. I am struck by their love for their children and families, and I am continually inspired by them.
From running support groups to advocating on behalf of our children, these women are passionate, fearless and a force with whom to be reckoned. When I look at the autism moms I know, it is easy to see commonalities despite their many differences. So my fellow autism Moms, here’s my 5 top reasons why you rock:
You are Fierce
In life, there is just no fiercer woman than the one who emerges to protect her child. Whether it is healthcare or education, autism moms are ultra aware of what is happening to their child, good or bad. They are passionate about helping their children and supporting each other. These “warrior moms”, as some have been called, fight for services, the right for their child to receive an appropriate education and the freedom to make healthcare decisions for their families. They seek facts, the truth and regularly challenge the status quo .
Sit around the table with autism mothers, and you will hear them sharing war stories. We may go into battle alone but we know there is another mom somewhere who has been there and can help support us. Through their voices and conversations, you will hear the relentless devotion to their children and families. These fierce mommas will not be taken lightly when it comes to the well being of their children nor should they.
So whether I agree or disagree about a particular subject with another autism mom, I give her my respect. She fights her own battles. She lives her life. She protects her children and her family. Call it fierce. Call it whatever you want. But never underestimate an autism mother. Autism never leaves our families, and we never leave our children unprotected.
You Have Strength Within
While autism moms often focus on how autism has changed our lives, we readily acknowledge and own the strength this path has given us. That being said, I am not sure I agree with the saying, “What doesn’t kill us, makes us stronger”. Yes, sometimes autism makes mothers stronger people. But it also can break a mother down to her very core. Autism has a way of toughening up even the softest of souls. We live life filled with stress, often in a state of “flight or fight”. But regardless of the emotions at hand, autism moms learn to get it together and get strong, because that is how our children need us to be.
Autism moms know there may be many battles ahead…with schools, doctors, insurance companies, the government, intolerance, etc. However, we never know who may, directly or indirectly, attack our children or try to cause them harm. Like a battle-worn soldier, we throw up our emotional walls to protect us from the hurt. We wear our armor never knowing what enemy could strike in any day. And even when a small battle is won, such as having a successful IEP meeting, we know the war is not over. So we enjoy our time with our families and friends, but the guards we have built around us never truly recede. For we know that at any time, the shoe could drop and we are back into battle once again. That is why autism moms are often some of the strongest women I know.
You Are Smart Cookies
Once you get a diagnosis, you soon find out you need to be a CEO, doctor, lawyer, and teacher all rolled into one. While I may be exaggerating a bit, there is a ring of truth to my statement. Autism moms often do much of the coordination of the child team and are making important decisions almost every day.
Many mothers are forced to learn not just what autism means to their child but also spend hours reading the latest autism research. If we are expected to agree with physician recommendations, we must be educated in those matters that pertain to our children. Sit in on a support group and you will hear discussions about bio-medical treatments and interventions, medications, sleep issues, fine motor issues, sensory, social skill curriculums, etc.
Once your child enters the school system, autism mothers become acutely aware that they must start learning the laws that govern the school systems. If parents want to ensure that their children get a free and appropriate public education (FAPE), learning the basics of special education law and how it affects their children is a must. Some of these “mom-advocates” I have met can go head to head with the best of Special Ed administrators and get education that is truly appropriate for their child. And when autism moms don’t know what to do, they know another mom who can help them find an advocate or lawyer.
Educated. Persistent. Smart. Autism moms do not have the luxury to be anything less. And to this day, I continue to be amazed by these mothers who do it all in the name of helping children with autism.
You Never Take Anything for Granted
The ability to communicate, ride a bike, swing on a swing, swim, eat whatever you want or to have a friendship, are all milestones and activities that many parents take for granted. Yet parents of children with autism are not afforded this privilege. Maybe our child will ride a bike by themselves; or, maybe not. With intervention, maybe our child will learn to create and maintain a friendship. Or maybe our child will have no friends and we will struggle to help our kids with social skills and friendships. Whatever the milestone, little or small, autism moms don’t take the[SAM1] little things for granted.
During our children’s lives, milestone achievements becomes a miracle to be celebrated not just a tally on a doctor’s list. Autism moms take it one day at a time and revel in accomplishments that for others come easily. I remember telling my own mother, “I wish he could say “Mommy””. So basic the need to communicate but sometimes so remote you can only see a flicker of it. And now, that my son can say “Mom”, several times a day, I know how blessed my son is to be able to do something that everyday people take for granted.
Appreciation. Gratitude. Thankful. Really none of these words can express the feelings of joy we feel when our kids make their goals. And perhaps that is why these moms don’t need to be told to slow down and appreciate things. They live autism and should they ever forget not to take things for granted, they get daily lessons from their children.
You Know No Boundary When It Comes to Love
Autism moms love their children beyond words. You will often hear moms say that even though they do not like the autism, they love their children. And it is true. No matter the behaviors or difficulties, these women openly express their deep love of being a mother and how much they love their child with autism.
Autism moms often go to great lengths to sacrifice…emotionally, financially and otherwise, to help their children make progress. We know there is not much room to make mistakes. Our kids are already starting off with a disadvantage, so we often feel the overwhelming need to get it right the first time. The autism moms I know accept their children for who they are yet never stop helping their child achieve their goals. Love truly is patient and kind and there is no boundary or conditions.
Love is…raising a child with autism.
Mothers with a Cause
Many autism moms face challenges every month with grace and support each other in a way I have never seen. When one of us falls, as we often do, these women are there to help pick each other up, brush us off and set us back on our way. There is no way to describe this “sisterhood” of autism but I feel we are all probably changed by the diagnosis. Are we better? Maybe yes, maybe no… depending on the day or to whom you talk. Sometimes we are strong. Sometimes we break. We are fighters and protectors of our families and children.
In the end, autism moms inspire me to be a better person. To try make the world a better place for our kids. To continue the fight. To get through another day, month, year. Whenever I feel the least bit sad about things, I can easily find another mother raising a child with autism who can show me “strength”. She can show me the path to help me fight another battle. She can lift my spirits and show understanding that only an autism mother could do. Yes, they do indeed rock!
In My book “From Autism to Beyond- A Mothers Journey of Hope” chronicles my specific story yet focus on how we as mothers are perceived and cope normally is not the focus. In Atlanta we commissioned a photo shoot and calendar the share our feelings in the journey. I labeled mine “funky” because that is how I feel about where my son is today!!