Losing a child to regressive #Autism


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 pour 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 me, 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 a 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.

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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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