Lizze was talking about one of Gavin’s many heartbreaking diagnoses and how she’s been researching Childhood Disintegrative Disorder. She wasn’t necessarily wrong in her understanding of what little is known about this absolutely devastating and rare form of Autism, but it rubbed me the wrong way.
Childhood Disintegrative Disorder is very, very rare and absolutely devastating. I’ve heard it referred to as the absolute worst diagnosis a psychiatrist can make. Basically, the child will develop typically until about the age of four years. Seemingly overnight, the child will begin to regress and lose much of what they have learned. There’s zero treatment and no cure. The prognosis is always bad. The rest is a bit blurry because there’s almost no research being done because it’s so uncommon..
That’s the gist of it.
Before I continue, it’s important to provide you with as much backstory on CDD as possible. Please click here to read everything I’ve written on the subject thus far.
For some reason, I became very angry with her approach to it and her outlook for the future. I can’t explain why I reacted like this, at least I couldn’t in the moment.
Lizze was guilty of nothing more than being a loving Mother, who’s maintaining hope that the condition has reached a point known as a plateau. This is essentially when the condition stops progressing and he will stop regressing.
What kind of monster am I to become angry with the Mother of my kids for holding onto hope? What the fuck was wrong with me?
It took some soul searching but I soon realized the problem wasn’t Lizze or her hopeful outlook for Gavin’s future. It was me.
I was sitting in the parent pickup line a few days later, waiting to pick up the boys from school when it hit me. I broke down and cried. It was one of those soul cleansing moments and it became clear what had happened. I’ve lost hope.
I’ve lost hope that everything with Gavin will be okay.
Over the last fifteen years, I’ve been to every single doctors appointment, every single specialist and asked countless questions. I’ve researched and written countless words on this subject. I’ve even connected online, with other families who are living through the same thing.
The outcome is always the same and it’s anything but positive.
I’ve lost hope because maintaining it is so incredibly painful for me. So many times along the way, I’ve been carrying the torch and so many times I’ve had my heart ripped out. I can’t bare the thought of losing Gavin and to me, the only thing worse is pretending the situation is anything other than it is.
I don’t know if that makes me sound like a terrible person or if it even makes sense?
Everytime I have hope and inevitably find my world shattered anyway, it’s like a piece of breaks. There’s a song by OAR called Shattered. I’ve embedd the video below.
In the song, Marc Roberge asks how many times can I break till I’m shattered. That’s exactly how I feel. How many times can my heart break before I can’t put it back together?
Grief doesn’t always follow a logical path to acceptance. You are grieving the hopes you had for the baby Lizzie bore, the son you were eagerly waiting. You continue to grieve every lost bit of ground. Over and over. But you have also been guilty of rejoicing every gain, celebrating progress and loving a child that needs love, believing in a child who needs believed in and supporting them all even to the detriment if your own well being. Please remember that also.
It says you are human. I think the same way.
Please don’t lose hope! As someone on the spectrum myself I can tell you your kids need and appreci… https://t.co/kS43LdjKwC
Thanks for sharing ✌☺
Thanks for reading. ☺
Simply, Rob, it says that you are human. You are grieving the life you wished for. I go through that many times a year, and as long as we recognize that these feelings make us human, as long as we legitimize our feelings, we can move past them. Some people push them away and down and out of our consciousness, but they always creep back up, usually worse than before.
I lose hope sometimes, too. During a particularly hard few weeks (I have Bipolar and was in a pretty bad low), I thought to myself, “I hope I outlive my kids, because who will take care of them when I am gone?”
I am being brave by making this thought public, but the truth is, society is hateful. Society will not take care of my children if they need mental health and autism services. I do not have faith in society right now.
My solace, was seeing my daughter perform at her preschool program this week.
If she can stand on a stage and perform with her classmates at age 5, I am pretty sure she will be okay, at least for the near future. As long as we support her as she grows into a young girl, then a young woman, maybe she’ll be able to function as well as her older brother (18, with Aspergers).
I still fear for their futures, however, the feeling of deep desperation has faded.
We are human, we love our kids, we want the best for them… we wish the best for them… and we feel sad (or worse) when we realize that what we wished for – probably won’t happen.
It hurts us. Because we love our kids.
I get it and you’re right. Being human is something we have no control over and embracing these feelings is really all we can do. Thank you for sharing your story. I really appreciate it..
Hi Emily, Thank you for expressing some scary things – that’s hard to do. As parents, we hope to bolster/teach/provide our children enough so that they can survive and thrive, but we still live with some pretty scary ideas in our heads. Not always easy to handle.
Just a question for you: what do you mean by “society is hateful”? Are you talking about society’s indifference to those who have special needs? Or maybe something worse? (Just clarifying as I thought it was an interesting comment)
Hang in there. You are doing some very hard work and it’s tough.
Dotdash, Unfortunately right now, I think American society as a whole is enjoying a lot of hate-filled activity, and with the current administration, bullying is all but encouraged. I have hope that the young people today are changing the world, and hopefully my children will benefit from a better future, because the young voices roaring right now are voting, and hopefully the vile underbelly of racism and hatred will go back into the closet.
I think particularly ugly sections of society are empowered right now and can spew this hate all over. Saner and kinder voices will prevail, surely. (well, I hope so. I guess people in Berlin in 1930 hoped so, too, and that didn’t work out so well)
I totally agree with this statement. Without delving to much into politics, the current administration has publicly taken joy in making fun of people with disabilities. They don’t condemn extremists and have publicly called nazis “fine people”.
It’s scarey to think of our kids trying to navigate this world but like you, I believe in the new generation of voters, who are fed up with this hate..
Just wanted to share this nice story about keeping hope with autism – “Facing the future with serenity”:
All the best.
I don’t know Rob. It’s perfectly ok for you and Lizze to feel differently about this. And maybe just because you’ve lost hope doesn’t mean you can’t still take comfort in the time you have with Gavin.
Thanks Becky. We began focusing on quality over quantity a little while back. It’s more important to make sure we make memories, than stress out about the future