8th Grade English "Cause and Effect" Project:
An interview with Mrs. Wessels, Sam's mom, by BT
- What does autism mean to you?
To me, autism means my life and the path of my life has been forever changed. For me, the parent of a child with autism, it means that most every idea of what I thought life was to be, isn't. For our family, autism means extreme controversy, an altered, almost alien lifestyle, isolation, desperation, and a fight like no other. It means we will from this day forward fight and battle every system from education, to medical assistance, the state and our government, to ensure the very best possible outcome for our child with autism. For me, autism means being on your A game every moment of every day because autism does not yield. It never rest. Autism fights for control; where as, we fight to control autism. We MUST come together; as a family, as a society, as a community, as a culture. With autism, it truly does take a village to raise him or her into adulthood and beyond.
- How has autism affected your life?
How much time have you got? It has affected every single facet of my life and most likely always will. Autism has given me many priceless gifts, taught me invaluable life lessons, presented me with excruciating anguish, as well as joy beyond measure. Autism taught me to take nothing for granted, no matter how simple or menial it may have appeared pre-autism. Respect and responsibility to self and others, diligence, discipline, strength, tenacity, endurance, true unconditional love, acceptance, empathy, compassion, all have been enhanced by having autism in our lives.
Autism has given me cause for pause. It has demanded I learn to slow down, despite myself, and find another way, no matter the odds. It has insisted; yes, there is ALWAYS another way, a different path. FIND IT or else! So, we look outside the box more than we spend time looking on the inside.
Determination and stamina!! Oh my goodness. Autism is stubborn! I have to be even more stubborn!! Autism works tirelessly, meticulously, to keep my child from me and the world he was born to. Autism keeps my child from me and our immediate surroundings. It captivates him. We, those who care about him and work with him, must stand at the ready, working diligently to draw him back to us, to reality, to life, to his life, not who autism would have him be. Autism has claimed my son; however, I refuse to allow it to own him!
Autism is a HUGE financial strain! Due to the sudden burst in autism diagnosis coupled with lack of funding and appropriate, readily available, services and treatment options, autism has literally driven us to the brink of bankruptcy. As autism continues to explode all around us; states, schools, medical professionals, our government, and even churches are ill-equipped to address the growing needs of individuals with autism, leaving determined, distressed families trying to find a means by any way possible. Autism never rests; therefore, neither can we. We must press on and march forward. WE HAVE TO TRY! How can we not try? He's my son!
If we aged according to the sleep we are privileged to and the stress we are forced to endure, I am quite certain I should have died of old age by now, after a mere seven years of autism. I am confident I cannot even begin to describe how physically, mentally and emotionally draining autism is to those who love and care for any one taken by it. It is something you have to live to understand, and that I wish on no one.
When I was told my son, my only child has autism, a lifelong developmental disability with no known cure, I was reduced to a puddle. My heart was ripped from chest, kicked and pummeled, leaving me in heap. A piece of me died that day. I will never again know that person I once was. Honestly, most days, I barely recognize myself anymore. I had no idea how truly happy I was going blissfully along in life, nearly aimlessly. I had no idea how basic and simple my life was; rarely a concern, rarely a crisis. I was about to find out however. I was about to experience the polar opposite of what had been life before autism.
Out of necessity, I have become researcher extraordinaire; master book keeper; the family accountant; a nearly-never-ending paper pusher (oh the forms.....and just when you think you're done, even more forms); endless therapy, consultation, medical and evaluation transportation provider; in addition to the mostly typical duties of a mother and wife. Did I mention I work full time as well? I have had to grow a thicker skin and learn to ignore those who just don't know any better. I have had to bite my lip, A LOT! I have had to forget the old me; accept the new me, my new life and accept that this is going to be a much lonelier, harder existence than anyone would ever willfully choose to live.
Patience. Autism has taught me a very different kind of patience. Yes, an inconsolable, non-communicative toddler requires patience. The rigidity and opposition to change of the individual with autism calls for extreme patience and tolerance. A constantly confused, scared and reluctant child requires much patience. The insulting comments and ignorance to autism from others requires tremendous patience. The unsolicited, completely useless advise, the sneers, the looks, the whispers all require patience. But there is another kind of patience known to parents of those afflicted by autism. A waiting, an anticipating, a hoping and praying for your child to one day do the things that other children are able to accomplish relatively easily, almost naturally. Like for instance; calling you "mama"; saying, "I love you"; jumping, running or riding a bike; giving you a hug; holding your hand. Just this spring was one such idyllic moments for me as I looked out my kitchen window one afternoon to see my child swinging on his swing set. He was independently pumping his legs, sailing high up into the sky. Something he was never been able to coordinate or master until now. My son is nine. I was so overwhelmed with pride and joy in my heart, it overflowed causing tears to stream down my cheeks. He still is not able to ride a bike or swim or hold my hand for very long or many others things other kids his age can do. Maybe this year? If not, maybe the next or the next after that.....
And then there is my family. A family I never knew existed; I never knew I had. So called "desperate" and determined parents NEVER stop searching for answers, never stop asking for help. Thanks to the Internet, we find it. We find each other. We bond; we share; we scream and shout; we cry and we celebrate each and every accomplishment, no matter how insignificant it may seem to the rest of the world. We share resources; we learn from one another; we lean on each other; we hold each other up. We have a bond not found, to my knowledge, in other causes or communities worldwide. We accept each other as well as our children for our unpredictability and irregularities. We do not allow petty disparities or differing opinions to destroy our love for one another, our need for one another. If we don't know the answers or how to help, we find someone who does. We fight the good fight every single day, together. We stand hand in hand, shoulder to shoulder. We march on together, looking for answers, asking for help, spreading awareness, shouting to the world," We're here! And, we're not going away!!" If anything, we are growing stronger in our numbers, in our knowledge, in our compassion for one another, in our unity. Some have gone before, some come behind. It does not matter. We are a certain kind of militia by our own rights, an army caused by autism. And don't you ever doubt but one day, WE WILL PREVAIL! WE WILL WIN THIS FIGHT!
So, you see, autism has given me many, many things both good and bad, which I would not have experienced or known without its influence.
- Do you think people with autism have a normal life?
Define normal. First of all, I do not necessarily believe "normal" exists. For the sake of semantics, I much prefer the term typical. And my answer is NO! Life with autism is anything but typical. Autism has its own clock, its own agenda, its own way of being if you will. The person enduring autism has a brain which is wired differently, a nervous system which reacts and responds irregularly, a body which is uncooperative, an immune system which is nearly always dysfunctional and so on. Normal? No. Typical? No. Has it become normal to us? For the most part, yes. Although, it still throws us a curve ball here, there and everywhere, for the most part, we are much more prepared to catch it this time 'round. We have adapted. We had to.
- How do you think autism affects a human?
In the course of what I have come to know about autism, from watching and raising my own son, through countless hours of research and from LISTENING to other parents, autism is an all-over body abnormality. Not just the brain is involved; the entire system is affected by autism. I also do not believe in just autism but rather many differing forms of autisms (plural). While I believe there to be many cross over areas and shared symptoms of people who have autism, I also believe that what we call autism is essentially unique and individual to him or her. Just as we are all different, so is every human being with autism. For some autism is merely a quirkiness and social ineptness while for others it is an extremely debilitating disease and illness. Each person with autism has their own strengths as well as weaknesses. They have their own challenges and struggles, no two are ever exactly identical. Therefore, we have to be especially diligent in learning how best to help and serve the person, not the disorder.
Sam's MAMA (Mom on A Mission for Autism)
CL CCC Paraeducator
CL Sp Ed Paraeducator
"I don't think the worst thing that could happen to me is having a child with special needs. I think the worst thing would be to raise a child who is cruel to people with special needs." ~ Matthew Mickelson Butman