Resentment,Grief and Guilt (A very honest post)

This is how I will always remember him

I want to talk about a very personal situation and share my feelings on this particular subject. Most of my posts revolve around Gavin, my 11 year old son. Honestly, that’s because Gavin’s behaviors are one of my single biggest source of stress. Please, notice I said “Gavin’s behaviors” and not “Gavin”.  Gavin is a very unique and very complicated person. I want to be very honest about my feelings in this post in order to give the world a better understanding of what our lives are like.

I also want people to understand that it’s okay to feel the way you feel. Raising a child on the spectrum is no easy task, but in the end, is totally worth while.

Gavin came into my life when he was about 15 months old. His biological father and my wife’s ex-husband,  was a drug addicted, alcoholic, wife beater and child abandoning loser. While that may sound harsh, every bit of it’s true. I said I was going to be honest. This is me being honest.



When Gavin and I met we bonded instantly. I grew to love him more than anything in the world (I would even fight, in court to protect him, for the better part of a decade at great expense).

One day, when he was 3 or 4 years old, everything changed. We put him to bed one night “Gavin” and he woke up someone else.

Most people won’t understand what I’m talking about and honestly, I don’t fully understand it myself. The truth is, it literally felt like he changed overnight. I know how crazy that sounds but it’s the God’s honest truth. He looked exactly the same as he did the night before, but it was no longer him. I remember thinking that someone must have come into his room in the middle of the night and stole him from us. In exchange we were left with someone we didn’t know.

This person looked just like Gavin, but at the same time, wasn’t. The light in his eyes was gone. His entire personality shifted and he became disconnected, violent and mechanical. He was a different person.

No matter how I try to explain this it will never make any sense and likely come across wrong unless you have experienced this tragedy yourself and even then…… That said, I’ll do my best to explain.

The Gavin I knew and loved, the one I had raised for almost 3 years had, for all intents and purposes, died. I hate reliving this because it is so incredibly painful to remember. Few people will ever experience this unique type of loss and I’m thankful for that. This type of loss is truly a torturous one, because while the child you loved is essentially gone, their body isn’t. Every single day I wake up, I see my son and for a split second, I forget what happened. However, without fail, I come crashing back to reality the moment I try to engage with him.

Even after all these years, it never really gets easier.

We sought the help of anyone and everyone that could tell us what had happened and how to fix it. When we heard the word Autism for the first time, it was like my world had been made of glass and with one word, shattered into millions of tiny pieces, never to truly be put back together.

We learned that Gavin was very rare and that he may continue to regress (which he has). I will never forget that feeling or that moment. I thought putting a name to what had happened would make it easier, but it doesn’t, it just gives you something to hate. For those of you out there, that for some reason consider Autism a blessing, I’m sorry if this offends you. I hate Autism. I hate Autism with every ounce of who I am.

However, let me say that while I hate Autism, I draw a very distinct line between Autism and Gavin. Gavin is my son and Autism is the force that has censored him, for lack of a better word.

As the years went on we battled this force, this Autism that had taken him from us. During this battle, we have discovered other forces at work as well.

Gavin has been diagnosed with Schizoaffective disorder, Pica, ADHD, OCD, PTSD, Sensory Integration disorder, Psychosis, Primary Immunodeficiency and a yet to be identified Degenerative Neurological Disorder.

Honestly, this battle has come at great cost and has been largely fruitless. It seems that no matter how much we poor into Gavin, not much seems to really stick. We have seen countless experts from Akron Children’s Hospital to the Cleveland Clinic, however, we are left with more question than answers. The only consistent thing we hear, is that no one has really ever seen a child like Gavin. I can’t tell you how frustrating it is to hear that over and over and over again.

When it was just Lizze and I, we were the only ones that paid the price of that fight. Now we have Elliott and Emmett to worry about as well. All 3 of our boys are on the spectrum and all unique in their own way. Elliott is very high functioning Aspergers. Most people would never know he was an ASD child. He does however, have a ton of anxiety, and as of late, has begun to struggle a bit. Elliot has nightmares because of the scary things Gavin tells him.

Emmett is pre-verbal and significantly developmentally delayed. As such, he has limited ability to communicate and is also sensory nightmare. His world is very difficult for him to navigate. We are involved heavily with early intervention and are currently battling the school system on his behalf.

Gavin’s behaviors effect the entire family. Gavin can be very violent. Usually it’s toward himself or his surroundings but on the rare occasion he can attach those around him. Until recently it was believed that some or most of the behaviors were outside of his control. However, it is very clear that most of Gavin’s behaviors can be willful. It has become clear that Gavin’s purpose is to simply disrupt his environment and those around him. He is more prone to outbursts but typically, he’s incapable of controlling himself, he just doesn’t……

In fairness to Gavin, none of this is truly ever his fault. Sure he makes the choices he does but there is so much more going on underneath the surface. The largest one being the extent of which he is emotionally delayed. Gavin is pegged at about 3 or 4 years of age, emotionally. This means that Gavin is basically a toddler trapped in the body of an almost teenager. When he gets angry, upset, happy or sad, he responds like a 3 or 4 year old would. So while he is making the choice at times to be disruptive, it’s just not that cut and dry.

The problem is that while he may only be 3 or 4 years old on the inside, he is much bigger and stronger on the outside. If a 3 or 4 years old had a meltdown or temper tantrum they would be nowhere near as dangerous or destructive as Gavin can be.

It’s challenging enough trying to raise a child on the Autism Spectrum. However, when you have child with Autism and an ever growing list of other problems it becomes ever more challenging.  The other major thing that factors into this is when he is purposefully disruptive as means of manipulating a situation. We are very compassionate and understanding when things are outside of his control. Where the compassion ends is when he terrorizes everyone in the house with his meltdowns. The resentment begins to form after years of being a prisoner in our own home. For so many years we have been held hostage by Gavin’s meltdowns and that only adds to the feelings of resentment.

The other side to the coin is that we are a blended family. Trying to blend two families into one is a challenging task to begin with. Instinctively, I want to protect Elliott and Emmett from Gavin’s behaviors and influence. My relationship with Elliott and Emmett is very different than my relationship with Gavin.

As much as I truly hate to admit it, there is a difference between Gavin and my biological children. Maybe it has to do with the fact that my Gavin, the Gavin I knew for so long, has gone away. Regardless of the reasons, it doesn’t make me feel any less guilty about it. I’m told that this is very normal. That no matter how much I love Gavin, there simply isn’t that biological connection. This is very difficult for me to deal with, but it’s something I’m working on.

I hate the fact that Gavin continues to behave the way he does.  He doesn’t seem to care how it effects everyone around him. There is talk of Gavin heading down the road of becoming a sociopath. No one knows what he is even capable of feeling, if anything at all. Simply typing that last sentence makes me feel sick to my stomach. Believe me, I know how bad that sounds. I also know how horrible it feels hear that about your son in the first place.

A really good example is when you get a hug from Elliott or Emmett, it’s warm and genuine. However, if you get a hug from Gavin it is mechanical and empty. It’s very uncomfortable and often times creepy. It’s heartbreaking for me because it never used to be that way. It wasn’t like that before Autism.

I don’t always know what to do with these feelings of resentment, not to mention the subsequent guilt.  All of the people involved on a more intimate level tell me that feeling this way is normal. After all, I’m only human. Gavin is sinking the ship. The question becomes where or not he knows he is and if he does why is he doing that to the only people who have stood by him through everything. Why would he want to hurt us? The simple and crushing truth is that it just isn’t Gavin anymore. The problem is that no one knows for sure what is going on and what his motives are. It become “easy” to resent the stranger in the house that is hurting Elliott and Emmett. It becomes easy to resent the behavior that has cost us our freedom and safety. It is also easy to resent Autism for taking Gavin away from us in the first place and leaving us with a shell of who he was. The irrational part comes in when I resent the Gavin that is here with us because his being here cost the life of the Gavin that was. There is so much grief and guilt that I feel everyday. What did I miss? What did I do wrong? I wonder all the time if Gavin is still in there somewhere locked away.  Everyday is an internal struggle to try to keep a perspective on everything. I have chosen to embrace my feelings both good and bad because if I don’t then the resentment could grow into something more. I understand that it’s ok to resent his behaviors and the choices he makes. It’s ok to resent the fact that he does these things on purpose. Sometimes it’s ok to even resent him for doing everything he does to every person in this house. But just because I feel resentment doesn’t mean I can’t still love him. Loving Gavin isn’t always easy but it will never go away…

Take a second and answer today’s Autism Parenting poll

What do you do when you get a break from your child with #Autism?

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About Rob Gorski

Father to 3 with Autism and husband to my best friend. Oh...and creator fo this blog. :-)

  


  • Marc says:

    What could i possibly say that you haven't already heard a thousand times before?? Sometimes it just can overwelm you,no matter how strong you think you are……My advice would be for you and the Mrs to think seriously about some meds to help you two cope with the incredibly stressful situation you find yourselves in right now……No shame in needing something to take some of the edge away so you can tolerate some of the stuff a little easier for a while.Its amazing how alone you feel at times, isn't it??So called "normal problems" seem so trivial anymore to me.I hate autism with all my being and i truely feel your pain and frustration over the situation. I just wish i had the magic answer we all so desperately need.

  • Robin says:

    I'm a first time reader on your blog tonight but you've completely hit home with the two posts I've read. Our dd added a second diagnosis that has really raised the stress level and the resentment. Treating autism was time consuming and expensive and required special planning for leaving the house. That was hard enough but very livable. But last June she began to develop new symptoms and has continued to get worse ever since. After 8 months we finally got in to a pediatric neurologist who diagnosed her with Tourette's. He explained that she is having tics and although she can sometimes delay them or slightly change how they're expressed, essentially she has to do them. Her tics include shouting, screaming, kicking or pounding on herself, household objects and occasionally other people. The stress on myself has nearly destroyed my health and, obviously, been very hard on my husband and her two typical brothers. The resentment of what she has done to our family is almost overwhelming at times. It seems no one ever wants to hear the ugly side of things but sometimes life is ugly and I thank you for saying it.

    • I know. Gavin, my oldest is dealing with Aspergers (he actually floats on the spectrum) and schizoaffective disorder. Life for us is barely survivable at times. I hate candy coating this in order to make "other" people feel better about "our" lives. The truth is the truth whether we admit it or not. I truly feel for you. My wife's health has significantly suffered as well. The only thing I can say is that you need to take care of yourself. It's ok to put yourself first sometimes. Also I have been in the situation before where I have to choose between my kids. The best advice I have ever received was that at some point "you have to preserve the health of the healthy". You and your family will be in my prayers. I'm not an overly religious guy but I will say a prayer for you. Hang in there. If you have a blog could I have a link. If you don't, think about starting one. It can be very therapeutic and it's a safe place to vent… Please take care…

      Rob

  • LeftCoastDad2Two says:

    Rob, reading through this, I found myself nodding my head and audibly concurring. Our life has been similar in so many ways to yours. The physical and emotional stress, the grief, the guilt, the anger, the hopes (and frequent lack thereof). The exhaustion and fear…the list goes on, does it not? Wow. Thanks for sharing. You're really prodding me along to get real and share our life with people around us (including my blog). Intellectually (?) I know we're not alone in the journey, but in the throes of a full-force meltdown and in the subsequent hangover, it is so easy to isolate. Thanks.

  • J Steinmath says:

    My dear friend-who-I-haven't-met-yet, I wish I could send you something of my heart to assist you and buoy you up. It seems that Autism has struck your family with the same basic effect as a volcano – killed someone you loved, injured others, and has in Gavin's case become something that you will probably have to amputate in order to preserve what is left of those you love.  It has become mental gangrene on all of you.
     
    Please, I beg you, find a way to distance yourself from feeling of guilt or blame regarding anyone involved – including the child Gavin you once knew.  This is no one's fault, and nothing you could have done or undone would have stopped it.  Strengthen your heart with the belief that you, as a human being, did all you could to shield your family from the lava.  You have learned to spot signs of eruptions, and how to mitigate some of its damage.  If the force that has possessed Gavin's body becomes too strong for your family to manage alone, please know that any moral "judgements" made from outside your family group do not matter.  You and you alone have the right – the privilege – the curse – of knowing what you are enduring.
     
    Oh, heck, I don't know what I'm even trying to say, except: go with your heart, your mind, your instincts, and do not be afraid to decide what to do.
     
    One of my favorite quotes is from Orson Scott Card's "The Worthing Saga."  Two characters are discussing a decision that one of them had to make regarding his mother's future:
     
    "You had no choice."
     
    "No.  But you would be surprised how many people act as if they do, and lose everything, because they could not bear to do what had to be done."
     
    Hang on to what you have, and do not obsess about what you are unable to achieve.  "Positive thinking" cannot overcome all.  It's okay to be angry, sad, frustrated.  If you do what you, at the time, believe is truly the best (even of all bad alternatives), you are doing well,
     
    I also believe that there is an afterlife, and that all our pains will be remade into joys.  We're finite humans trying to make our ways through an infinite universe.  Sometimes, this long view helps.