“I remember the first time I had that ‘punched in the stomach’ gut feeling something was off with my son. To the outside world, it may look like he is too spoiled, too coddled, maybe not disciplined enough, bratty—and to some it may seem like I am an out-of-control mother, too strict or not strict enough. This list could go on and on.
Plenty of times have I been on the receiving end of those looks from people passing by when we are in public areas, and my baby is having a meltdown. When he is high-pitch screeching, or throwing himself on the floor, or hitting himself (or all three…plus some!), and unable to communicate verbally what he feels or wants in the moment. I remember hearing mothers mumble under their breath how I have no control over my child’s ‘tantrum’ and how their precious angels would NEVER do that, or if they tried they wouldn’t get away with it. Sometimes it’s just easier to not go out, to not be faced with the unknown of a meltdown. So when you constantly ask me to hang out and I don’t, please understand it’s just not easy, it’s not me rejecting you.
It’s one thing to get the glares, the stares, and the mumbles from strangers in public—it’s a whole different story when you are receiving this from some friends, from some family, from some people who are in your circle…and you KNOW in your heart and mind they just don’t get it. They tell you to discipline more, maybe a good spanking would settle him down—or say to tell him he HAS to use his words, screeching is not an option. They tell you to read this book and that book about ‘parenting a boy as a single mom.’ They tell you he doesn’t have autism, it’s all in my head. I wouldn’t be surprised if someone suggests an exorcism!
So I breathe, and I breathe again, and I pray and sob on my bedroom floor but I get up, and I remember—okay, people don’t understand autism (for goodness sake, I barely do yet!) and it’s not entirely their fault when they are making assumptions or giving unsolicited advice which may work for a neurotypical child, but not for my baby. So instead of slowly letting my heart soak in bitterness and resentment, I want to talk to those of you who don’t quite get it, but have good intentions.
First of all, when I am in public and my son is having a ‘tantrum,’ it may actually be a meltdown. My son is not seeking attention, or for me to give him that candy I told him he can’t have and therefore is reacting. He is experiencing a meltdown: this is a state of neurological chaos where the brain and nervous system are unable to cope with things. Typical tantrums are often manipulative: a child learns he will get what he wants if he cries or screams, and so he cries and screams. Autistic tantrums are not manipulative, they are genuine cries of distress. Now, let me be clear, my sweet little curly-haired boy most definitely has tantrums like any three year old, but he is able to express himself, he is able to stop, he is in control of his emotions and will respond to discipline when it’s a temper tantrum.
When he is having a meltdown, he temporarily loses control because of emotional responses to environmental factors. They aren’t usually caused by one specific thing. Triggers build up until he becomes so overwhelmed he can’t take in any more information. Other behaviors which may appear are less explosive but are equally common, such as refusing to interact, withdrawing from situations he finds challenging, or avoiding social situations altogether. So please, please remember his brain is processing things differently and his sensory world is much different—sounds, lights, smells—it can overstimulate him to the point where he goes into a meltdown, he is NOT misbehaving in these situations, he is trying to cope.
So, the day finally came. I knew already in my heart and mind what the neuropsychologist was going to say. I already knew, deep down in my heart—this maternal instinct of mine was not mistaken, and I had battled with this thought for over a year already. My stomach was turning, my nails were bitten from days before. And after a six-hour evaluation, I heard the doctor say, ‘It is safe to say he most definitely fits in the spectrum,’ and as she continued to speak about setting up an appointment in four days to receive the formal diagnosis from my son’s neurologist, and therapy options, I zoned out. Immediately I felt relief—thank God I am not a paranoid mother who thinks everything is wrong when it really isn’t! Thank goodness she confirmed my concern for odd behavior, repetitive language patterns, delay in motor skills, etc. Suddenly, I felt like, okay, I am not a bad mother, I am not what people think I am when my child is having a meltdown in public. I am not a crazy, stressed out, over-anxious, hypochondriac, single mom who can’t control her son. I am not a helicopter mom in the park who can’t leave her son alone—he has a poor concept of danger and could easily get hurt.
However, I AM a concerned, intuitive, perceptive, loving mommy, who has cried and prayed endlessly on sleepless nights, who has asked questions to no end, researched, gone to specialists and doctors she can’t afford! Now I can begin to help my boy! As soon as the realization of feeling relief hit me, I sunk down low into this dark hole that spun out of control (and to be truthful I find myself falling into and climbing out of it frequently these days). What if he is verbal now, and then one day is completely nonverbal? What if he refuses all affection and touch from me because of sensory issues? What if he is never able to adequately express his feelings, his emotions, and has constant anxiety? What if he is never able to be independent, live on his own, fall in love, have a wife and children? What if he has to live with me forever and I still can’t bring relief to his mind? Will God grant me 969 years of life, like Methuselah, so I can take care of my son? What if I die soon? And…I took a deep breath, and continued to listen to the doctor tell me what the next steps would be for us.
For those of you, specifically my Christian friends, family and acquaintances, I want to convey a clear message. In no way, shape, or form is accepting a diagnosis given to my son a sign of lack of faith in God. I will not deny the power of God to do anything in anyone, and His ability to change any and every situation. I am not in denial that tomorrow my baby boy could wake up and be a neurotypical child. With this said, I will also not be in denial my son has been diagnosed with ASD (Autism Spectrum Disorder). I do not plan on settling for a diagnosis by one doctor, based on one evaluation, at the age of three. I do not plan on settling on one rigid form of therapy. I do not plan on limiting his future based on a diagnosis. I want to live in the reality my son has a different way of seeing and perceiving the world. That his brain works differently, and as a mother, I will do every single thing possible on the planet to help my child be happy and live an abundant, joyful life, now and as an adult.
This is not me giving into science and giving up on God, this is not me letting go of faith for what God can do. So please, remember when I tell you about his diagnosis—I am also believing for complete wholeness and happiness for my son, but most of all believing in God’s will to be done. Notice I do not wish for healing, because my son is not sick, he is not ill, he does not have a disease. So please, please…I beg of you to not talk about my boy as if he were sick. Autism is a developmental disorder characterized by widespread abnormalities of social interactions and communication, and restricted interests and highly repetitive behavior. These symptoms do NOT imply sickness, fragility, or emotional disturbance. My son is different, and society has tried so blatantly to tell us what ‘normal’ should be.
Telling you my son is sick because he is autistic is just as ridiculous as suggesting you are sick because you are North American and not Asian, and therefore need healing from God. So please, refrain from telling me I need to declare God’s healing over my son. Healing is not the word, he is not sick. However, with that said, I most definitely accept your prayers for God’s touch on his life and body—he does have a disorder, not an illness. So here I sit, as I write this, facing a world unknown, a future unknown, but not alone. I go back to the time the doctor told me my baby had no heartbeat while in my belly and had to be born two months early. I go back to the time where I was told my son may never have brain activity and had no normal response to the electroencephalography…yet a couple days later showed perfection in his brain MRI exam.
I go back to the time he was in coma for 19 days, couldn’t breath on his own without a machine, and God put beats in his heart and air in his lungs and life in his body. I go back to the time they had to revive my baby’s heart after surgery, and right before my eyes I saw my lifeless baby restore life. I go back to the time I didn’t know how I was going to pay a thirty thousand dollar hospital bill and had no job. I go back to all the times I didn’t know how I was going to survive, and God’s unfailing love, mercy, and grace have poured over me time and time again, endlessly, through amazing friendships near and far (you know who you are), who let me fall apart when I needed to, fasted with me, prayed with me, encouraged me. Through my son’s amazing teachers, who have been the daily and tangible reminder of God’s care, love, and presence to us. The unwavering and unconditional love my baby and I receive from the care my mom offers. I put things in perspective and grab a hold of that unwavering faith these years of pain, trials, consequences, and experiences have deeply embedded in my heart, which far outweigh the fear, the uncertainty, the unknown, and even a diagnosis.
While you may be thinking I should just be lucky or happy I even HAVE a son, please remember there is an element of mourning the loss of a neurotypical future I may have laid out in my mind for my son, and I am in the (never ending, continuous) process of letting go of control—over my life, over my son’s life, over our future, over our circumstances. Don’t tell me not to be sad, don’t tell me to just get over it, don’t tell me it could be worse. I know that! For those of you who know me, or my family, you are well aware I know this could be worse, but it does not minimize the pain, the cause for mourning and grief. This does not cancel out— that just because someone else has it worse I have to paste a smile on my face at all times.
My baby is very much alive, but some dreams may very well be redirected or dying. Please don’t tell me ‘he’s not THAT bad, it’s hardly noticeable, it’s very mild.’ Nonetheless, he has something I’m sure you would feel some type of way about if you were going through this with your son or daughter, with your sibling, with your loved one. It is my process to grieve, whether you understand the element of grief or not, it’s still existent. I strongly believe it will also be an element of celebration at moments, that is my hope. So…I remember the first time I had that ‘punched in the stomach’ gut feeling something was off with my son, and now I remember never once were we alone, my loving God and Father has been, is and will always be, with us through every single moment. Who knows, perhaps this is yet another tool God is using which will also continue to chisel and mold me during motherhood.“
This story was submitted to Love What Matters by Melany Gamboa. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more powerful perspectives from special needs moms:
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