Autism is one of those human conditions that impacts every person touched by it in a different way. Sometimes those differences are not so big and other times those differences can be so profound, that you may wonder how they can all fit underneath the umbrella known as Autism..
Each of our three kids is impacted in different ways by Autism. Gavin is easily the most profoundly impacted though.
Gavin has an extremely rare form of Autism called Childhood Disintegrative Disorder.
There’s almost no research or support for this blacksheep of the Autism Spectrum family. Most people haven’t even heard of Childhood Disintegrative Disorder or CDD.
Unfortunately, CDD is absolutely devastating and based on what little is known about this disintegrative disorder, there is never a good outcome. The reason this is so devastating is because a child is born and develops typically until roughly the age of four years. At this point, the child will begin to regress.
In our case, it felt like we put Gavin to bed as Gavin and when he woke up the next day, he was someone completely different.
In reality, it wasn’t necessarily overnight but that’s how most parents, including myself, describe it. It truly feels like that’s what happened.
The pain is unimaginable because you have a typically developing child one day and seemingly out of nowhere, the child youve known and loved, slowly slips away. Please forgive how incredibly terrible this sounds but in our case, CDD stole Gavin from us many years ago, and the person left is a shell of who he once was.
Gavin’s recently turned eighteen and while he’s an adult, at least chronologically, he’s far from it in reality. The heartbreaking truth is that Gavin will never be a functional adult. He’s incapable of living on his own, and has so little self-awareness, that he will walk around the house with food or toothpaste all over his face, and not even know.
My wife and I will always have guardianship and make most, if not all of his major decisions. That’s a tremendous amount of responsibility and stress. It breaks my heart in ways I can’t explain.
As time goes on, Gavin continues to regress and that means loss of speech and language. It means loss in cognitive ability, problem solving skills and even motor function. His memory is failing and single step tasks are often too much for him. He wasn’t even able to finish high school. He didn’t make it past his freshman year because of his overall failing health.
To give you a better idea of how bad things are for him, he was granted a Wish this past Fall. It was the very first family vacation we’ve ever been on and it was an absolute blessing. You can read all about this trip and browse all the pictures.
It’s absolutely awful and the only silver lining is that Gavin is not very self-aware. That’s a blessing in a way because generally speaking, Gavin is blissfully unaware of his regression. He’s happy with his Legos, tablet and 2DS. We do find some comfort in that because he’s not afraid, stressed or in pain.
We have been advised as to where this journey is going to end. Between his failing emotional health and his life threatening, physical health issue, we’re under no illusion. What we don’t know is what the journey holds as we make our way towards what feels like an inevitable outcome.
Life with Gavin is getting more and more difficult. This is true for a million different reasons. The most obvious being, he’s essentially a six year old, in the body of an adult. When he gets upset, he responds as though he’s a small child and that can prove to be very challenging. We have to stay ten steps ahead of Gavin because he has very little impulse control and almost no self-awareness. He doesn’t remember things and we have to stay on top of him, to ensure he doesn’t accidentally hurt himself or someone else.
We have to keep Gavin as active as possible. He does chores around the house and is learning basic life skills. It’s important to keep his mind active and his body working in conjunction. This also serves as a way of gaging how well he’s doing. Over time, chores he had once been relatively proficient at, he now significantly struggles with. We have to keep him practicing these things and working with him in order to help him maintain as much as he can, for as long as he can.
It’s a daunting, frustrating and physically/emotionally overwhelming for us as parents. It’s excruciatingly heartbreaking and these are just the things in the Gavin column on a good day. There are endless things we have to worry about in the Elliott and Emmett column as well. I’ll share more about them in a dedicated a post.
It’s really tough to find the words to describe what this is like. You will probably never get it and frankly, that’s a good thing because it means you’ve never experienced this devastating condition, slowly steal your child away. Please consider that you don’t get it as a blessing, because I do. I wouldn’t wish this on anyone.
Rob….you have pretty much sacrificed your life for your kids…my respect is unmeasurable because I don’t think I’m strong enough to handle what you are going through. My boy is higher functioning,meaning he knows what he wants, but doesn’t have the ability to get there. It’s heartbreaking to think he will never have a wife, a job, be able to drive…..stuff that when I was his age was so taken for granted. I’m betting that you are like me and beat yourself up because we can’t fix our kids and we are always thinking of what more we can do. And then there is the when we are gone problem that sucks the life right outta ya. Prayers man, many many prayers to you and yours.
Thanks Marc. ☺
Hi Rob, I have high-functioning autism but I actually wasn’t born autistic either. I was totally normal until I was 18 months old, with absolutely no developmental abnormalities. At that point, I lost my speech, started to become socially disengaged, and started doing the autistic repetitive behaviors. I stopped talking altogether just after I turned 2 and I did not speak again until I was like 6.
I graduated a private mainstream high school as a valedictorian and I’m now studying at university.
And you said Gavin is still regressing?!?! And he is still having all these major health issues getting worse!?!?!
I know vaccines have no part in any of this But, by any chance, did you even entertain that Gavin could look like he has CDD but has a progressive nuerodegenerative disease like Sanfillipo Syndrome? Did you have him tested for such genetic diseases?
I read that in a few cases of CDD, both CDD and a rare nuerodegenerative disease, can be present.
Thank you for sharing your family’s struggles on this Easter morning Rob. Your writings open up iss… https://t.co/KpXn1Edax5