childhood disintegrative disorder Archives - Page 184 of 276

I’m so fricking stressed out this morning

The boys are supposed to be in a run this afternoon and I'm not sure what we're doing at this point. It's currently 40°F and it's been raining all night. The roads are drying up at this point but it's still very cold out. Everything was free so it's not like we're losing any money. I'm worried for a couple reasons. Emmett doesn't like getting his feet wet Emmett will only wear crocs and no socks It's cold, cloudy and raining on and off Elliott cannot find his wind pants If Emmett's feet get wet, it's going to get ugly There are a few people coming with us and I don't want to cancel at the last minute because we're holding out hope for something that's not practical At the…

0 Comments

April 28, 2018

Autism Parenting Confessions / Gavin / Inspirational Posts / My thoughts

I’m a Special Needs Dad, guilty of losing hope

I haven't written a truly heartfelt piece in a very long time. Writing has been such an intrical part of my life for so long now but I feel like I've lost my voice. Writing has lost its meaning and I've lost my passion for it. I'm working to rebuild that part of my life and it's not easy. There are roadblocks I've yet to overcome and others that cause me to veer off course, at least temporarily. That being said, and reasons I can't explain, I feel compelled to talk about hope. I'm not writing about it in a way that's meant to be inspiring to others, at least I don't think it is. I'm writing about how I've lost hope. I'm writing about something very personal and painful…

17 Comments

April 26, 2018

5 Things / Inspirational Posts / My thoughts

My 5 biggest #Autism Parenting worries and how I’m addressing them

If being an Autism parent was a video game, the difficulty setting would the three or four notches above the highest setting. That's not meant to be a joke. Autism Parenting requires more from a human being than most human beings are capable of. My wife and I are no exceptions to this. Over the last seventeen years, we've had to constantly triage our life, shifting our priorities on a daily basis, in order to meet the needs of our kids. It's an exhausting way of life because there's always so much to worry about. I wanted to address some things that my wife and I worry about as Autism parents, as well as, how we're addressing them in a positive and productive manner. I'm focusing on things that I…

2 Comments

April 23, 2018

Gavin / Vivint Gives Back

Making changes to keep Gavin from hurting himself at night

We've been having some issues with Gavin, particularly at night. The other day, Gavin got up about 9 PM to use the bathroom. Lizze was still reading to the kids and I was in the living room. All of a sudden, we heard a really loud thud. I thought Emmett had fallen off the top bunk but Lizze headed right to the bathroom cause she knew it was Gavin. Gavin swears up and down that he never fell. He claims he only put his hands on the floor to keep himself from falling. Everyone in the house head the thud and no one believes it was from him gently putting his hands on the ground. The problem is that for some reason, his bedtime medication is making him very sedated…

2 Comments

April 12, 2018

Inspirational Posts / My thoughts

I will NOT be swallowed up by the negative in my life and here’s why

I'm so stressed out that I'm feeling sick to my stomach. Truthfully, I'd be sick to my stomach anyways cause of this stupid Paxil withdrawal but stress makes it so much worse. Rather than continually being swallowed up by the negative, I'm working to focus more on the blessings and here are a few examples of what I mean. It's all about perspective and the following are things weighing very heavily on me but there are hidden blessing in each situation. ☺ Our house sucks and the neighborhood is dangerous, but we have a roof over our heads. There are people out there who don't even have that. The car is literally rusting through, falling apart, no longer worth fixing and is too small to fit everyone without causing problems.…

2 Comments

April 3, 2018

Autism Parenting Heartbreak / Inspirational Posts

#Autism breaks my heart in more ways than I can explain

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…

5 Comments

April 2, 2018

Gavin / My thoughts

It’s getting harder to cope

I'm having a harder time coping with Gavin lately. God forgive me but he's driving me fucking crazy and I simply don't have the patience he deserves to receive from me. It's important to understand that Gavin's isn't necessarily doing anything wrong. He's just being Gavin. The emotions I'm experiencing in regards to coping is probably two fold. It's part frustration because Gavin's functioning at maybe fifty percent of what he was, say two years ago. The other part is pure, unadulterated heartache because he's only functioning at maybe fifty percent of where he was two years ago. The frustration and heartache are very real. They are very, very impactful emotions, that are at odds with each other. I find myself frustrated by his behaviors and exhausted by how difficult…

0 Comments

March 26, 2018

Gavin / My thoughts

There are times as his father, I have to turn away and cry

Lizze and I had a fairly decent night to ourselves. The E's were at their Grandparents but Gavin was home. It's not really a night off, even with Gavin being the only one home. Gavin is becoming more and more difficult to manage. That wears heavily on us both physically and emotionally. It's physically exhausting because it's physically exhausting. It's emotionally exhausting because it's painful beyond my ability to articulate, seeing Gavin decline to the extent he has. Heartbreaking is probably a better word choice. Gavin is such a sweet kid but he's 18 years old and we have to seemingly micromanage his every move. We have to make sure he doesn't hurt himself doing something he shouldn't. We have to make sure that all the things that he doesn't…

1 Comment

March 25, 2018