Losing a child to regressive #Autism

      5 Comments on Losing a child to regressive #Autism

Update: This post was written on April 08, 2014. Much has changed since then and much has stayed the same. Recently, people have been reaching out because they have shared a similar experience and I believe this post will be helpful to them. It’s raw and emotional but it was the truth as I saw it back then. This was a very difficult time and we still struggle to this day. 

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 relevant.

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.

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About Rob Gorski

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

  


  • H H says:

    My son was diagnosed Autistic at 2yrs 7months x

  • H H says:

    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

  • Teresa_White says:

    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. says:

    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 says:

    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