Silly me, writing yesterday about how I thought we might have hit rock bottom with Jack, our 7-year-old son who struggles with severe autism. We had a train wreck of a weekend, but I thought he was turning the corner. He had a fairly peaceful night on Sunday and then a relatively decent morning on Monday.
I got home from work last night and got the rundown on how everybody was doing. All three kids had been well behaved and were sitting on the couch in the front of the house. Jack was completely calm. Ahhh, what a breath of fresh air.
Not more than two minutes later, he started having another meltdown. He started hitting his head and escalating his crying. It was so out of the blue, we had no clue what was going on. It was totally bizarre. Of course, everything has been bizarre lately, so maybe that’s normal. At one point, he put his hands on his stomach, so we we figured he had a stomach ache.
Poor little dude with the leaky gut. Internal pain is the story of his life. As I’ve mentioned, he has a life-altering disorder above the neck, but he also has major problems below the neck. He seems to always be in pain. His body is battling itself. If he could talk, I’m sure he’d tell us he’s miserable.
He slammed his head against the window, but it didn’t break. That was the second time in three days I saw him do it. I started to think that sooner or later, he was going to break that window. There are two concerns with that. One, he’s going to hurt himself. Two, that’s a big window that’s going to cost a pretty penny to replace. Don’t get me wrong — I’m more concerned about my son’s health than my checking account. But our resources are finite and that’s something we have to keep in mind.
About a minute later, he popped up on the couch and I could tell he was going to bang his head, so I got him down. He was upset, but he calmed down. Tiff was over there near him, and he seemed like he was doing OK. She was keeping a close eye on him, as was I while I was in the kitchen, about 15 feet away.
About five minutes later, out of the blue, he calmly popped up, and we could both immediately tell he was going to slam his head. In that split-second that took forever in our minds, we both dashed over towards him, but it was too late. He hit his head into the window. This time, the glass broke.
That’s when total chaos broke loose. Jack was instantly upset. Tiff and I made sure he was OK, and he was. But it was so frustrating, because it seems like he’s destroying everything in our home. Nothing is safe with him and he seems like he’s out of control. There’s no real need to second-guess this one, either. There’s really only so much you can do, and detaching yourself from the rest of the family and watching him like a hawk from 3-4 feet is reasonable.
Benjamin and Ava started freaking out. Ava was scared and upset about the broken window. Ben was upset because he had just sat down to eat his dinner and now the commotion made things miserable. He relocated upstairs. We got Ava to go upstairs fairly quickly. I started yelling some things that were inappropriate, because I was completely upset and frustrated. I’m ashamed of that, but at the same time, I know I’m human and imperfect.
We have a man coming to replace the window this morning. It’s 46 inches by 57 inches, a pretty good-sized piece of glass. With the house call and the labor, we have the privilege of parting with $150 we could have used. We were all numb from the experience the rest of the night.
You know how sometimes you just have a shocking event, and then you’re numb, and then the next thing you know it’s time to go to bed and the night passed you by? Yeah, that was last night. Silly me … I thought things were getting better.
On the bright side, Tiff recorded this video of Ava while she tucked her into bed:
I guess there are some positives to this parenthood thing.
Well, I hope you have a good Tuesday. And quite frankly, I hope my family does, too.
Edit: One of the main reasons I posted this is because I wanted to paint a little bit of a picture of autism from my perspective. I see a lot of people put positive spins on autism, because they love their child despite their child’s autism … well, I love Jack as much as any parent loves their child, but I refuse to put a positive spin on autism. I’m not politically correct in that regard. My son is autistic. Some people say you’re not supposed to say that, because autism doesn’t define somebody. But that’s delusional. Autism DOES define Jack. And Tiff. And me. Jack is autistic, and there’s nothing good about that.
John A. Atilano II says
I don’t know what to say but wanted to write a comment to show my support. Reading today’s post, I felt helpless. I cannot begin to imagine what you, Tiff, Ben, & Ava and Jack are going through. You are all in my thoughts. I hope tomorrow is better.
Mandy says
I am amazed at Ava, and I could tell by Tiff’s voice and comments that she was, too. After such a traumatic evening, the weariness and wisdom coming from that little girl….wow. I’m very glad Jack wasn’t hurt by the window. I hate that the situation happened at all, of course. Praying for you all still….and sending my love.
Sarah R says
I have been thinking about you guys since your post yesterday. I don’t even know what to sat, but wanted to let you know that I am praying for better days.
Jamie Fellrath says
I don’t think the people who always try to paint the rosy picture about autism, and “how much they’ve learned from it,” or “I just have so much more patience now,” or “I just feel blessed that God thought I could handle this,” or whatever have a child with the same level of autism as Jack. It’s too easy for them to judge when they haven’t walked in your shoes.
I know I verbally lose my patience with Duncan on occasion. I feel like crap after I do, but there’s only so much a man can take sometimes. You guys have my ultimate respect and admiration for how all cope.
Michael Busch says
I can’t say I know what you are going thru, but I can say that my thoughts and prayers are with you and your family. I just can’t imagine the strain on all of you and the overwhelming sadness you must feel often. Darn I just wish we could somehow figure out what is behind this dreaded condition known as Autism!!! I just wish and hope for your family, and Jack to find peace, and for you to experience the calm of what most of us face on a daily basis. Those of us who don’t have to go thru what you all go thru tend to think we have it bad some days, but I just can’t imagine how much you must long for Jack to find peace, and for everyone in your family to enjoy it with him.
The other day I was on a run, with my OJ shirt on, and a woman struck up a conversation with me while I was stretching post run. I know the cost is prohibitive but I thought I would send you a link to a camp here in Colorado that she mentioned. It is: http://www.adamscamp.org/
I did tell her about Jack and your family and she complemented all of you on your courage. Sam, I can’t take away the pain, but only say that I would if I could.
gene @boutdrz says
Thoughts and prayers headed your way. Times like that are tough! I totally understand where you are coming from with regards to calling Jack Autistic. He is. I think that accepting that reality is helping you, as well as him, in the long term.
Stay strong, stay flexible.
Be Well,
Gene
Jason says
I agree, Sam. Autism sucks. I hate what it’s done to and taken from my family. What happened with the window reminds me of all the “things” that were either broken, or thrown out because they posed a danger of some sort to our son. And as much as I like to put that positive spin on every speck of progress, there’s always a specter of what autism has taken away… yes… much of it is my hopes and dreams for my son. However, my son deserves to thrive in this world without pain and seizures. He deserves to be able to communicate with the world around him and to be understood completely. He deserves to have endless opportunity… but, I have to admit… the opportunities (like the finances) are finite. Keep up the fight, Sam. You are doing a great job!
Tina Seina says
Love Ava’s explanation of Autism. My boys watched it with me and they asked more questions about my cousins little boy who has Autism. Ava is a smart little girl and its very obvious you guys are not “neglecting” your children.
You are in my prayers!
Ben says
Really believe you guys are doing all you can. Only wish the best for you and the family. Ava is adooooorableeeeeeee.
Willis says
Hi Sam. I’ve been out of touch for quite awhile now – because I’ve been really busy with a infant – 10 months old now.
Just wanted to send my support over to you and let you know how incredibly impressed I am that you’re managing Jack through all this. I can’t even begin to imagine how hard it is – my baby is hard enough, and I only have one! I have no clue how you manage running, let alone run marathons (I’m hard-core, and I have no friggin’ chance with the infant) as well as you do.
Kudos on keeping up the incredible family life, running and getting Operation Jack together. After seeing all that you do, I’m humbled – you’re an incredible person. Hang in there, and best of luck with all the family and running. I hope to see you at a CA race in the very near future.