Losing a child to regressive #Autism


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 worthwhile.

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.

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H

My son is 5, nonverbal & has such bad spd I can’t take him anywhere or do anything with him other t… https://t.co/8SI8bnjtHZ

H

My son was diagnosed Autistic at 2yrs 7months x

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.

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

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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