Where are the mornings when I could savor the aroma from the fresh air and look outside to the welcoming rays from the Sun? Where are the less stressful moments, when almost every encounter with love was not a battlefield or a melt-town waiting to happen? "Please bring back the sleep; I just want to get at least 5 straight hours of undisturbed rest."
These are the frequent questions and thoughts that goes through my mind when I think back of my many challenges during the past 11 years raising a child with a disability.
I'm certain, "who feels it knows."
My next few statements are not meant to cast criticism but to shed light on the many experiences, looming questions, wave of emotions felt by many of us Autism parents or any caring for someone with a disability.
More frequently than not I wonder, "Those who are on the outside looking in, those who have or know a friend or relative raising a child with any disability, do they really understand the scope of mental and physical toughness associated with actually living the life of an autism parent? (most often, single Moms) Do others really understand the trials we face?
Most say they understand, but in actually, they've not fully grasp what it really takes.
Much love and appreciation to those who show loving concern and offer their support in anyway to us in this fight. However, being an autism parent takes so much more. It takes gut, will-power, patience, sacrifice, sanity, love. It's a fight to shape someone's life for survival in a world foreign to their understanding. It's a fight sadly most do not understand.
Though I cannot speak for everyone else as each has their individual stories, however, I write about the things I feel and have experienced with the hope that some of you will to relate and possibly identify to a few of my concerns.
Shortly before my sons diagnosis I became a single unemployed mother of two children. As soon as I received that diagnosis, almost like a flash of lightening, my life took on a life of its own. It became a spinning wheel of numerous hurdles, of steep levels to climb, each with its own challenges to overcome or cope with.
After the initial shock and tears, one of the greatest challenges I faced was understanding the spectrum. During my learning process, I had to help others understand my child's condition and what it entailed. I felt like many people ask questions to know but not to understand the condition. Questions like, "what is wrong with him?" Others make comments like, "He does not look autistic" was frequent; comments that can send an autism parent up the wall. "Does Autism have a special look?"
I've had many instances when I go out with my child and if he was having a meltdown or acted a certain way, people accused him as being ill-mannered and felt he lacked discipline. Many have turn up their noses; some look at me funny, making disgusted gestures even saying unkind words because they think he is being unruly. And even if I identify him as having autism, most feel he should be scolded anyway. I know most people speak out of ignorance but others are just plain mean. As much as I try to ignore the negative comments and gestures, sometimes it still hurts. I know I do my best as a mother but most times such comments have me questioning my ability as a parent to raise my child in the correct way.
Others do not understand child's occupational needs and will stay things like, "if he was my child he would have eaten what I give or put on his plate." As much as I know we have to encourage our children to try out other foods and so forth; and we do. However, this is a struggle for most of us parents with kids on the spectrum and situations like these often does not go well. To this comment I will ask, who will help bear the physical and mental stress of enduring two hour melt-downs? Who is present to say, "I will take you outside for a walk or a ride? Who will help redirect and offer something else in return? Who will be there to give a break when needed or take the initiative to spend a day with him to understand a day in my shoes? Who will see me dragging with fatigue from a broken spirit and sleepless nights and care to offer a hand? Most are afraid to deal with it and others would rather watch from a distance and cast their opinions.
I have spent countless days simmering down melt-downs and tantrums, sometimes hours on end and then repeat the following day. I have dealt with aggression, things being thrown or broken. I've had a child literally in my face from 30 minutes to 1 hour because something broke or he could not find a part to a toy, lego or puzzle pieces. I've dealt with the sleepless nights and more times running on empty than even half full on energy going back and forth to maybe 3 or 4 appointments every week; I've had to decide whether or not my child was in pain because he could not speak while battle my own plight. Most times I was on my own. This does not even touch the surface of the many challenges. Still I am left questioning, "Am I a good parent?" "Am I doing enough within my means to shape him for the future?" "What will happen to him when I'm gone?" Do people really care to understand the sufferings? The doubts, the anxieties, the fears that are paramount each day. This is compounded by another problem: the single in single parent.
Being single is hard enough not to mention the loneliness that comes with it. For most of us, it's hard to find a mate or even have someone look at us. They will empathize with us but for the most part, it feels like no one wants to take on a woman with a added responsibility of caring for a child with a disability. Yes, I've heard it! That makes it difficult because we have needs as well. We, just like everyone else even more so need love, support, someone to share our frustrations with in the darkest moments, someone to cry and lean on, someone to help release that tension, someone to take the wheel when we no longer have the strength to carry it physically.
Though my faith and reliance on my God keeps me going, however I must admit the need for companionship and physical contact is much needed especially when Autism has won the day; when I'm so physically tired I can't think; when my spirit is so broken, that I'm struggling to breathe, when depression is has me isolated from the world outside.
Most times the feelings of inadequacy within, I cower in shame. Not that I'm a coward but feel that I will be looked down on because of my situation or my child's. It is said that Autism parents experience stress levels comparable to combat soldiers. We need help, support.
Having a child with a disability is not a plague for any single parent. We learn lots from our children including unconditional love and heightened patience. But are we understood? Are we given the credit deserved? Do others care to understand us or what we face every single day? We are definitely in a fight to be better understood! What are your thoughts?