By: Inas Younis
Its takes strength to hold on, but it takes even more strength to let go. But I am a mother and I could only do what came naturally, and so I held on. I held on as tight as I could without hurting him. I held him when he tried to jump out of moving cars. I held him when he tried to attack the neighbors. I held him when he tried run out into streets. I even held him as a form of therapy known as holding therapy. And although he is now gone, I am still holding on, and I just don’t have the strength to let go. Whoever said mothers are strong, did not really understand the meaning of strength.
But now the time has come. Blinded by tears, and deafened by an inner voice which keeps reminding me that mothers never give up on their children, I am going to let go. But before I do, I must throw myself before a jury of my peers and ask for their forgiveness. I know what you are thinking, only God can forgive me. But I don’t need forgiveness from God, for he has been on and by my side since day one. He was there while I screamed and cursed at the heavens for making my son autistic and epileptic. He was there when I begged for a miracle every day for ten years straight. He was there for the countless sleepless nights when my son screamed in pain. He was there when my son had his first seizure. He was there when I had my first panic attack. He was there then, and he is here now. I don’t need his forgiveness, for there is no sin in coping. And I do not need forgiveness from my fellow man, who was completely oblivious during the beatings, the fecal smearing, the screaming, the property destruction, the insanity and horrors of my life which I hid from their innocent eyes and ignorant hearts. No, what I need in order to let go, is forgiveness from a jury of my peers. A jury of mothers who have suffered some measure of the horrors I have for the last sixteen years. For only they can understand, and not because they have been through it, but because many of them are still going through it. They are my heroes, and after you hear my story, they will be your heroes too.
So please allow me to plead my case , starting with the most obvious defense. I tried everything!
Was I aggressive enough with his therapy, his special diets, his medications, you ask? Well let me see if I can remember, because as most of us mothers with special needs children know, we all suffer from a bit of amnesia. It’s our brain’s way of dealing with trauma. I think there is an acronym for it called PTSD. The world of autism is full of acronyms. There is GFCF, SCD, ABA, ASD, IDEA, ESY, and my all time favorite, WTF. But luckily, I kept very detailed journals, so no worries. Of course at the time, I kept them because I was trying to decode the mystery of autism and in my case severe autism. I micromanaged his every bite of food, supplements, medications, and therapy in an effort to isolate cause and effect and determine patterns of behavior. But no patterns emerged except for one; I was going crazy. I submit to the jury the following Journal entries.
October 2003: I am in autism hell, which right now means hiding out in my bathroom while the devil has his way with my son. According to my notes the only thing I introduced in the last couple of days to his supplement protocol is an orange flavored fish oil. Therefore, no more orange flavored fish oil. Note to self: use alternate fish oil. To do list: email the following fish oil companies until I find the purest fish oil known to man.
June 2004: I am at the bottom of empty, hopeless, but doing whatever is necessary to survive. Where have I gone wrong?! I am knee deep in shit, literally speaking, because of all the accidents he is having. WTF. Tomorrow, diet revaluation. Take more copious notes. Don’t skip supplements! You are a miserable mother. Get it together!!
September 2007: Dear God, There are mothers watching their children get blown up by land mines. And all I have to deal with is an aggressive, non verbal child with bowl issues. I seriously need a dose of perspective, and a double shot (of espresso). Note to self: Stay away from drugs and alcohol.
Dear God, what the hell!! I spent all day praying. My forehead has been glued to this cheap carpet begging for some sign of your mercy and you send two Jehovah’s witnesses to my door. Is this some kind of cosmic joke! Anything, anyone, any denomination, any religion, a Girl Scout with cookies would have been more merciful and meaningful than two teenage boys with starchy white shirts. Are you testing me? If you insist on this kingdom of heaven, then hold the elevator, cause I wanna go down!
Dear Diary, 2012: Autism hell take two. We had a “good” week, then wham bam, he went postal. It's going to be okay, because it’s already a prolonged case of not okay. There is no place lower to go. I am already in hell, and its cold down here.
Dear God, cure my son. Thanks in advance.
These are just a few of my many journal entries. Yes I was going crazy. I was a mother, and that’s what mother’s do when they are forced to watch their children suffer. They start to lose it.
Before I go into the many other ways and means I employed to help my son. I need to be clear to the many faithful members of my jury that I tried the God route. The dark night of my soul came and went. I had my crisis of faith. I did heed the advice of every denomination and religion, mainly my own. I went through the four stages of grief (I skipped acceptance) and the five stages of spiritual growth. And every time someone told me to find Jesus I had a blasphemous urge to say. Find Jesus?! I am being crucified every day on the alter of altruism and sacrifice. I suffer everyday in total futility with nothing to show for it, and for sins I did not commit. I suffer and I do it without taking vengeance on nature or God or my fellow man. Find Christ? I am Christ!
That’s what I am tempted to say, but I do not say it for fear that I really might get crucified by my Muslim community. They do not take kindly to such irreverence. I am confessing all this because I ask that you refrain from advising me to turn to God. I did turn to God and he said that no one is immune to the laws of nature. He said that if it were his design that we should suffer, he would not have equipped mankind with a mind to circumvent disease through the application of science. Bad things happen to good people, because it’s the good people who will make things happen. Necessity is the mother of invention for some, and superstition for others. Nature wins, gravity wins, you lose!
And so I decided to abandon superstition, and embrace logic and science, even if it had yet to find a cure. But my effort to think outside the science box while sitting in it would backfire. A mind will not permit contradictions to comfortably co- exist because it was confined by the laws of logic. So if I wanted to find a place where no boundaries to my delusional thinking existed, the place to go psychologically was not a thinking place, but a feeling one. That is why God resides in the infinite space of the human heart rather than the finite space of intellect. I needed God, but not to perform a miracle and cure my son, but to help me to maintain the delusion that I can do it. So I stopped turning inward and started reaching out, not just to science , but to other human hearts.
Dear Doctor, I am desperate. I will do anything. HELP! Any guidance you can offer would be greatly appreciated.
I went from begging God, to begging doctors, to begging other parents. I researched constantly. I was going to find a cure or die. My eyes started blurring from all the hours I spent researching on the internet. My fingers ached from texting and emailing on my iphone. So you can imagine my glee when one day a parent responded to one of my many emails, offering hope.
Dear Inas, I have two sons on the spectrum who have lost their diagnosis. Would you like to come over and visit with us?
I drove up a small dirt road as two perfectly healthy boys excitedly ran up to my car. They urged me to come inside. I hesitated, because my son was in the car and I was afraid he might hurt them or destroy something in their home. A heavy set woman came out reassuringly waving me to come in. “ You will get no contempt from me” she said. “Bring him in.” My son and I walked in and she immediately disarmed him with her loving embrace. She asked her boys to play with him while we sat down at a small table littered with toys and papers. She was a home schooling mother of five. Two boys autistic, now recovered. She gave me a tour of her home and her kitchen, where vats of coconut oil, homemade kefir made with raw milk , and fermented vegetables lined the kitchen counters. I already had my son on a very restrictive special diet. But apparently there was so much more I could do.
So began my new obsession, this time with food. Within six months I had weaned him off all medications, and had him on a specific carbohydrate diet. Within one year we hit a honeymoon period. Something happened. He started to calm down, seizures stopped. He was happier and more manageable, which meant less dangerous.
Dear God, Thank you. Exhale for ten seconds, and enjoy the calm before the storm hits. And it did hit , like a tsunami - hello puberty.
Along with the demons of puberty came growth, the physical kind, and seizures, the unpredictable kind. He was getting heavier and taller and I was shrinking in more ways than one. And for the first time I realized that if things became any worse, my unspoken secret fear might be realized. I might lose my son to a fate I believed was worse than death. I might lose him to that obscure, frightening, non -entity, commonly referred to as - the system.
So I went into a panicked state of doing everything to make sure that no one caught wind of what was happening behind my closed doors. I became the outlet for his OCD, doing whatever he wanted to stave off a meltdown. I micromanaged his every need. Slept at the bottom of the stairs to keep him from running away in the middle of the night. I put locks on the inside of the house. Took away all sharp objects. And resigned myself to a life of isolation.
But the inevitable was about to happen in spite of my efforts. That phone call that every parent dreads finally came. But to me that phone call was not a call to inform me that I was about to lose my son, but that I was about to fail him.
The director of his therapy Center, refused to release him to me. She said that she could not in good conscience leave him with me and risk my getting seriously injured. So we went from his therapy center straight to an in-patient facility.
I have spent much of my life trying to avoid that very moment. I had finally reached a dead end. My denial had become almost as severe as his autism. And I suppose I am giving you the sordid details to alleviate my debilitating guilt.
But I do not think I really want to be exonerated, for I am guilty as charged. Maybe what I really want, is not your forgiveness, but his.
It will have to be enough that I learned a lot from my experiences. I learned to scream, I learned to care, and I learned not to care. But most importantly I learned the meaning of love, the unconditional kind. One of the happiest moments of my life was after an incident where my son bit my hand so hard he broke my skin. I looked at him , and pointing to my bleeding hand, and not expecting a response I asked, “why did you do this!?” But instead of his usual oblivious demeanor, he looked me straight in the eye and said in the clearest voice I had ever heard him use and in a tone not unlike that of a typical teenager’s, “ because I do not like you. ” All the pain, both physical and emotional melted away, because I had just heard the most coherent full sentence he had ever spoken in his life. I was so overjoyed that I did not care that my son had just confessed his bitterness towards me. It was more important to me that he was able to express himself than whether or not he liked me. And that is the meaning of a mother’s love. She loves even when she is not loved. She gives even if she does not receive. She lets go even if she wants to hold on.
It takes strength to hold on, but it takes even more strength to let go. Gravity wins. Let go.
Inas Younis is a freelance journalist and mother of three. Her opinion pieces, book reviews, and personal essays have been published on various websites and magazines. She was a regular contributor to Autism spectrum magazine.