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Losing a child to regressive #Autism

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The purpose of this post is to help educate the public as to what it can feel like to be a special needs parent. Well, what it feels like to me to be a special needs parent. I have tried to put into words what it felt like for me to lose my oldest son to the regressive form of #Autism. I wrote this a while back but I think it’s still very relavent.

My words may not make sense to some of you but I hope that they at least bring some understanding. There are many special needs parents out there that have experienced grief and live with these same feelings that I express here in this post. I want you all to know that it’s okay to feel how you feel. Please don’t ever let someone tell you that you’re wrong or even a bad parent for feeling a certain way. 

At the core of every special needs parent, beats the heart of human being. This means that while we are capable of amazing feats, at the end of the day we are still human beings and can become overwhelmed, frustrated and even resentful…yes, even resentful. It happens, it’s normal and it’s okay. 

What matters is what you do with those feelings. What matters is that regardless of how overwhelmed you may feel or how resentful you may get, you never give up and you continue to love and care for your children. instead of being filled with guilt for feeling these things, I have chosen to embrace them and recognize them for what they are, just feelings. 

I chose to use these feelings to help me remember that simply because I may be faced with superhuman challenges, that doesn’t mean that I’m superhuman. 

I hope this makes sense.


Losing a child to regressive #Autism

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 attack 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 has become The question becomes whether or not any of this is within his control, and if it is, why would he do 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 becomes “easy” to resent the stranger in the house that is hurting or scaring 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…

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About the author

Lost and Tired

I'm Rob Gorski and I started this blog in January 2010 as a means of sharing my family's real life journey raising 3 boys on the #Autism Spectrum.
It's important for people to understand what Autism can really be like and the impact it has on the family. We aren't a TV show and there are no actors. This is our struggle, our journey...and it's all true.

I am "Lost and Tired" and
this is "My Reality #Autism".

Permanent link to this article: http://www.lostandtired.com/2012/04/08/losing-a-child-to-regressive-autism/

3 comments
Teresa_White
Teresa_White

I know you wrote this over a year ago, so I'm not sure if you will ever see this comment. I just wanted to tell you that the first part of your story brought me to tears. My son Tristan who will be three this June is also a victim of regressive Autism. I will not say I know exactly how you feel, because we are dealing with totally different child, but on many levels I totally understand. The process with my son was not over night like some children. It was more gradual, he changed around 14 months. My son was your everyday toddler, a bit of a puzzle master compared to his peers and still is. But he talked in 3 word sentences, could tell you he was one, responded, engaged in your conversation, he was charming in every way. He still is a very sweet little boy. But he is not the Tristan he was. It is more than heartbreaking. I love my son with all my heart and more. I totally relate to you about grieving as if a death occurred. I feel this way everyday, I don't think it will ever go away. I do not allow this to affect my relationship with my son in no way, shape or form. But it affects me personally. I want to know where my son is, is he trapped with in his own mind and body. I don't understand where he went. Parents of the Children who are born with autism of course grieve as well. But I believe those of us who have children with regressive autism grieve in a totally different way, that no one will understand, ever. If your child is born this way, then you grieve the loss of your hopes and dreams for your child. But when it's regressive, you truly grieve from the loss of a child you once had. It awful, it eats me up inside. Of course I'm truly blessed to have my beautiful child in my life, I'm so glad he is here on this earth with me. That in itself should be enough, but it doesn't take away my pain, from losing Tristan as he was. When I was a working mom, I would go to the bathroom at work, lock myself in and just break down and cry so hard. I wanted to fix my little boy, I cursed and blamed myself. I went through denial, anger, the deepest pit of sorrow, I myself was becoming and empty shell of my former self. I choose to cry and battle the autism demon at work, because I didn't want my little boy to see mommy like that. I'm not sure if he would have understood that I was upset anyways. He does not respond to others emotions for the most part. He respond to laughter, which us awesome. :-). I truly feel for you and your family. I wish that there was a way to fight back. If the doctor called me tomorrow and said hey we found a cure for your son, you must come in an have your arm taking off to cure him. Well guess who would be walking around with one arm? I would do anything, I would scarifies any part of myself so that Tristan could have Tristan back, and so I could also have him. Thank you for sharing your story. And you are not alone with your feelings of grief.

T.E.
T.E.

This is a beautifully written, raw, and honest post. I do not have direct experience with a child on the autism spectrum but I can understand the conflict you are feeling. It is very human and very normal to feel this way and I applaud your courage to write about it. Others who feel this way need to know they are not alone. Thank you for baring your soul.

autiesmama
autiesmama

Rob--while every parent "mourns" the "child who could have been" when they get the autism diagnosis, your loss is, I think, far more palpable and more concrete than most. And your "loss" continues to an unknown. Good God. I can tell you that even though I am a teacher and I knew full well in my heart that Daniel was autistic, when we received the diagnosis, I feel the hell apart,. Just broke in two. Nothing had changed about my child. He still was the one who sits closest to my heart, but The Words were too much. And I mourned. And mourned. Annnnddddd mourned......(you get the idea). Now, this is nothing compared to what you're handling and what you're facing. I suppose I remember "before autism," and how that was, but that's my demarcation--my child didn't change one bit. And for all that I mourned, we've been blessed to get so much of that "before" child back--you know how you give up all hope and then rejoice as the child makes progress--well, Daniel has blown us away like that.. Thank God. Seriously, Thank God. Because I cannot fathom personally surviving what it is like to watch a child "go away" right in front of your eyes, in spite of your love and nurturing. I am so very, very sorry that this is in front of you. You remind me that my burdens are really pretty light in the grand scheme of things and I wish you didn't have that job, no one should have to be contrast like that. I understand the resentment, to a degree, and oh yeah, I would be resentful and angry at the child you face--not a great thing for a parent, but a real thing, just one we're not supposed to mention outloud, maybe? Your honesty with yourself and with your readers is a a gift, and I thank you for that. We could do with more of it. Best--Leslie My recent post He’s a Tree

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