Before we get started, I wrote this a few days ago. It is an honest telling of how I feel and that feeling is often dark. I feel like the diagnosis triggers the feelings of loss, but instead of getting over it in time, I feel it is more like a carousel that we ride. We float from the stages of grief, and I tried to capture that here. Like I said, it’s honest and was probably the hardest piece yet easiest piece I’ve ever written. Without further ado.
I am going to vent, and try, and put into words what I feel. This isn’t easy for me, but it’s high time I dig deep within myself and say the unspeakable. I am angry all the time. It boils beneath the surface of my everyday life, and I do my best to hide it. That gets harder and harder every day. In the quite places of my mind, it simmers as I seethe about what my life is and has become.
I love my son. I want that to be clear from the get go. I wouldn’t trade him for anything. Do I wish that I would wake up and find that he’s no longer autistic. Absolutely! I don’t think there isn’t a special needs parent that would not open a vein to bleed the cure for what ails their child. To do something that would ease the burden they face and will face in life. Because in that scenario, there is at least something to do. You aren’t just sitting there managing the illness or condition waiting for improvement. It isn’t a hurry up and wait thing. You can physically do something. The inability to do anything to affect your child’s burden has to be the hardest pill to swallow. Everything else stems from this one thing. Your child is nonverbal? You can manage it. You can do things to help it. The child can improve, and you bust your butt to make that happen. However, in the back of your mind you know that it could all be for nothing. You are fighting for a chance all the time. A chance that this thing you are doing will make some sort of difference. Moreover, you are working so hard at it, that it feels like you’re going to break. Then that dark voice in your head says “This isn’t working. You’re wasting your time.”. You try and tell that dark voice that it is wrong. That this time will work, but you can’t hardly convince yourself. It’s frustrating. That frustration is the heat that works upon your pot of anger.
It is sufficient to say that helplessness is the primary feeling here. That leads to frustration. Then on the dark days, which there are many, worthlessness appears. You feel like a bad parent because you feel like you should be doing more, but there isn’t more to do. So you reach out for help, for resources, for a cute little Etsy sticker that makes it all okay. It isn’t okay! And, you know it. Reaching out does help, but it creates other problems. You either learn that you are wholly ignorant of so much that could have been helping your kid all along, or confirm that you are in the hurry up and wait spot. I find there is little in between. So, you’re back to feeling either worthless or helpless, and that cranks up the frustration propane tank.
So, you are dealing with the issues of your child. You feel like crap because there isn’t anything more to be done to erase the pain and hardship your child is facing. Everything little thing in your world revolves around this thing that you can’t help nor control. That brings the flame to a roar. Now you are talking to other parents, specialist, friends, family, and anyone that will listen of your issues. Everything revolves around your child’s special needs. I relish any conversation that has nothing to do with autism. Because, your child is autistic, but you are the one drowning in it. They will never know what it’s like to not be autistic. They don’t have memories that show them a life before it, and I get sick of talking about it. It is necessary to talk and vent that out, but more often than not, I just want to escape it. Autism is the bomb that destroyed the life I had been building. The what-if monster loves to prey on that. I long for a time and life where not everything revolved around this one thing. There is no escape. There is barely any hope, and yet I am expected to truck on. I will continue to truck on, but that doesn’t stop the fantasy. Because, in that fantasy, I am not carrying this one ton lead blanket on my shoulders. In this fantasy, my wife and I can be married without being shell shock from the mortars of autism. I can have a family where I don’t have to explain my son to everyone. I could have a “normal” life, and not have to feel like I am disappearing. I am convinced that special needs is an emotional and social solvent that eats away at the parents. Every time someone ask an ignorant question, every meltdown, every time I read an evaluation report that says my son is “profoundly delayed”, I get dipped into the battery acid of autism. That frustration heats the lead of that blanket until its molten rage.
I suffer at the hands of a label. If it were just me, I think I could cope with it better. I could adapt better. However, it isn’t just me. My wife suffers. My marriage suffers. My child suffers. Their suffering is unforgivable. I try to be the bedrock of strength and support that they need. I want to be that for them. I have to be that for them. I give of myself to them and those around me to the point of having nothing left for myself. Every scrap of positive fighting energy is spent, and the demand far exceeds the supply. I can’t generate enough fast enough to keep up. So often, I am left with nothing but my negative feelings and my obligations. I am a failure as a father. If I were better, my son would be better. I am a failure of a husband in a failing marriage and it is my fault. If I took more time for us, was more romantic, supportive, we would be closer. I am a failure at my job. The needs of my family prevent me from being the worker I can and want to be. I am left feeling like every aspect of my life is done halfway. That burns me deeper. It burns to a point that I can’t contain nor control it. It colors my expectations and actions to that of a sadistic cynic. That isn’t me! Nevertheless, it is who I am becoming. Feeling unloved by those around me. I don’t know how much heart ache one mortal man can endure, but I feel like I am setting a record. Moreover, if setting the record brings solace and comfort to someone else, then by God I’m going to keep going.
I am left raw and speechless at the brutal honesty of this entry. We feel just as helpless and hopeless in knowing how to lift you up and encourage you and Courtney. You have a tremendous load upon you as the provider, as the husband, as the Daddy. I know your love is what drives you on. You are stronger than you know, and everything you do counts. I love you, and I am praying for you. There IS hope… ~sjm