Childhood Disintegrative Disorder Archives

I’m losing my son to Childhood Disintegrative Disorder

This was a very difficult video to record. I did my best to hold it together but talking about Childhood Disintegrative Disorder and how it's impacted my oldest son, Gavin, is incredibly painful. CDD is a very rare and regressive form of Autism. A child will develop typically, hitting appropriate milestones and then one day, around the age of 4, everything changes. You can read more about CDD here: https://en.wikipedia.org/wiki/Childhood_disintegrative_disorder https://youtu.be/ac-TKjVm8x8

1 Comment

May 31, 2018

Childhood Disintegrative Disorder / Gavin / My thoughts

Childhood Disintegrative Disorder is stealing our son from us

This post was started on Friday and has taken me this long to finish. It's been a long weekend and I apologize for my absence. I was largely absent here today because I'm struggling a bit right now. I'm having a hard time coping with certain things at the moment, Gavin being one of those things. I'll be the first to admit how terrible that sounds. I can assure you, it feels worse for me to say that. Gavin is driving me crazy and it's taking a toll. As time moves forward and his overall condition worsens, it becomes harder and harder for him to think. He has a much more difficult time trying to think his way through even the most one dimensional situations. These are things like figuring…

4 Comments

February 26, 2018

Childhood Disintegrative Disorder / Emmett John / Gavin / My thoughts / PFAPA

New health concerns for 2 of my kids with #Autism

I haven't had the energy to catch you up on a couple of things that are causing us to be concerned, in regards to the kids. I'll start with Emmett because we learned something new about his fever disorder, while we were at the immunologist the other day. She is the doctor that handles his fever disorder, as well as Gavin's Immunodeficiency, everyone's asthma and seasonal allergies. She also handles Elliott food allergies. When it comes to Emmett's fever disorder, we have been chasing this thing since he was roughly a year old. Fever cycles consist of many different and evolving symptoms. What we refer to as a flare up, presents with mouth sores, joints that are hot to the touch, massive mood swings and sometimes a fever. These symptoms…

10 Comments

April 8, 2017

Childhood Disintegrative Disorder / Gavin / My thoughts

How many times can one father’s heart break? Too many. The answer is too many.

I don't feel really positive right now and that bothers me. Unfortunately, the reality is that sometimes life just sucks. Life is unfair and cruel at times and it feels like Gavin has had a disproportionate amount come his way. Gavin's still hallucinating and frankly, things are getting worse. He's becoming very preoccupied with his visibly challenged group of super best friends and is spending less time in the reality that the rest of us live in. His friends are always coming with him now and he's involving them in his decision making. This morning he drew a picture of Twilight Sparkle's Midnight form. Twilight Sparkle is one of his visibly challenged super best friends. Before he drew her in this particular form (seen below), he told me that he…

18 Comments

August 26, 2016

Childhood Disintegrative Disorder / Gavin

Gavin has been officially diagnosed with Childhood Disintegrative Disorder #CDD

It's been a really long day and I haven't felt like writing tonight because I'm trying to process everything. I was going to do a Periscope broadcast and I probably will tomorrow at some point because sometimes it's easier to simply speak. I'm going to try to write this but my brain is sorta on overload at the moment, so please understand that I'll write something more coherent later. Anyway, I didn’t want to talk much about this until I had spoken to my family first. I spoke to Lizze and most of my family. I'll try to talk to Lizze's Mom again at some point to explain what's going on as well. I just didn't want people reading about this before I could tell them myself. The image above…

17 Comments

October 6, 2015