Every time our situation with our son Jack’s autism gets worse, I think we’ve hit rock bottom. It can’t possibly get any worse. And then sometime later it does. I think we’ve hit rock bottom. Again. It can’t possibly get any worse.
My wife Tiffany has been chasing Jack around non-stop since May. Real quick, in case you’ve never been here before, Jack is the Jack in Operation Jack, the only reason I bother with everything I’ve tried to do over the years. I love him to death. I sometimes just sit there and look at him and try to wonder what’s going on in his mind. He’s less than two weeks from turning 9 and really isn’t communicating and he’s still in diapers. He’s like a 1-year-old in a 9-year-old’s body. But he sure does break us down.
Long weekends, like this Labor Day Weekend we just had, are the kind of things young families love. I think. I mean, I wouldn’t know, but it sure seems that way when I see what my friends are up to on Facebook. We feel like we’re trapped in our own personal hell, though. We can’t go anywhere or do anything. He’s always a threat to have a meltdown and it’s gotten to the point that we don’t even bother trying to do anything. Tiff had to leave the grocery store on Monday. He’s good for 20 minutes at the local park. There’s a pretty good chance there’s going to be some kind of explosion on any car ride that lasts longer than 15 minutes.
I’m pretty high strung because of all of this. And I get to go to work every day. Tiff, on the other hand, has a miserable existence. She’s been Jack’s shadow for the past 3 1/2 months since school let out. We’re keeping him home until September 17 as he goes through some therapy. Our other kids, Ben and Ava, don’t know what a typical childhood is so I think they’ve accepted this as normal.
They know they can’t have pizza in the house because of him. They know a lot of times they can’t talk when they want to because he’ll get upset. They know that any time they play a game together, Jack might walk up, destroy it in less than five seconds, then walk away. To Ben and Ava, this is normal. It doesn’t bother them. It’s what they’re used to.
We had a fairly stressful weekend. Jack was having constant meltdowns. He was up in the middle of the night. On top of that, me and Tiff are going through some economic stresses right now, as is probably everybody else in America. Late Monday afternoon, I was out in the backyard and Ava ran out to get me and was screaming hysterically. Something about Tiff needing my help because Jack was having another meltdown.
Normally, she can take care of everything, but this time, that wasn’t the case. Tiff was frantically crying about how it was the worst meltdown she’d ever seen Jack have. It took both of us to restrain him. He was also hysterical and while I’m numb from all of this commotion we’ve dealt with over the past 7 1/2 – 8 years, it’s still sad to see. The little guy just doesn’t deserve this. He wasn’t born this way.
The rest of the evening we were all in a funk. The weekend had taken a big toll on us emotionally. We were drained. We just wanted the day to be over. We were standing in the backyard, watching the kids run around, wondering we can possibly do to make things better. We feel trapped and every day, as much as we hope to escape this, we know we’re not going to.
We eventually called it a night, sapped of every last bit of energy and happiness we had in us. Then, at 2:15, like a newborn, Jack woke up crying. It happens all the time. Tiff went in to take care of him, to calm him down and try to get him back to sleep. Business as usual, our life as we know it. She came back to bed and then we heard a really loud crash. We don’t know what he did, but I’d guess that he slammed his head into the wall out of some kind of frustration.
We both ran down the hall to take care of him. He was pretty out of control. Hysterical, crying, tossing and turning. It’s because of his permanently damaged insides, caused by the four Hepatitis B vaccines that he didn’t need, that he’s always in pain. He’s always in pain and always failing to be able to communicate or understand what we’re telling him. Monday night, it was about as bad as we’ve ever seen him.
It’s probably terrible to say this, but I was looking at him in the darkness of his room, thinking about how much better off he’s going to be when he goes to heaven someday. He’s going to have a sound mind and body that work perfectly and don’t cause him problems all day, every day, all night, every night. We’ve vowed that we’re never going to institutionalize Jack, that this is our mission and we’ll do everything can and make every sacrifice we have to in order to keep him in the home.
But in the middle of the night, in the middle of my crankiness, I started thinking that maybe he’s beyond what we can handle. He seemed out of control and in need of serious, serious help that goes beyond the therapy he’s getting. I told Tiff maybe we should have him hospitalized to have him taken care of. But the medical community doesn’t know how to handle kids like Jack yet. Until they realize that vaccines can cause injury, they won’t be able to truly treat autism.
So she started crying, telling me that trying to put him in a hospital is like one of those movies when the person in trouble goes to the police for help, but the police are actually the bad guys. We feel like we have nowhere to turn. We have a permanently damaged son and there’s nothing we can do about it. And for some reason, it seems like it just keeps getting worse.
When he’s calm and quiet, I look at him and see a cute little human. He means no harm. He has a pure, sweet heart. But I really can’t even find the words to explain what it’s like to look at him knowing he’s permanently damaged, that his life in this world is ruined, that he’s not going to get a fair chance. Lots of other people don’t get a fair crack, too, but it’s my son that I deal with on a daily basis.
We’ve been optimistic for a long time that things are going to get better. But I think we’re finally, after 7 1/2 years, starting to accept the fact that they’re not. It will still always be a mission of ours to do everything we can to improve his quality of life in this world, but we’re coming to terms with the fact that it’s really never going to get much better. So while we thought we’d hit rock bottom, we hadn’t. I’m just hoping it doesn’t get any worse.[subscribe2]
Erin says
My heart is broken reading this. I’m so sorry, Sam. I think about your family and little Jack all the time, and I’m so sorry to hear about this rock bottom. I can’t sit here and say “it’ll get better!” or “hang in there!” because I don’t have the slightest clue how incredibly tough this is on you, Tiff, Ben, and Ava. But thank you for sharing your story with us. I’ve always admired how brave you and Tiff are as parents, and how strong your family is. Tough as nails.
Kirsten A says
I second the comment on your being the strongest, bravest family I know. I think about you all the time … when my kids are having melt downs or I’m having a rough time being a mom … I imagine what it’s like for you and Tiff every day. The way you’ve stood beside Jack and brought the reality of autism to light for so many others is something to truly, truly be proud of. Jack is lucky to be your son. Hoping today is better than yesterday 🙂
gene @boutdrz says
chest bump, man.
props to you for hanging in there, and for letting it out here. i honestly don’t know if i could do either.
Peace….
gene
Rachel says
Honestly, there are no words….
Keeping you and Tiff and the family in my thoughts and prayers. Always remember that you and Tiff are incredible parents and I pray that the number of good days will outweigh the days like the one you described.
Christopher says
I can relate with my daughter it is one day at a time, there are those days that my mind is in that place. But I feel God put me here for her and knew I was strong enough, it takes a lot of tears, but also moments of happiness to survive.
Kari Cranfill says
My thoughts and prayers are with you all. You are truly amazing people for trudging through one day at a time. Keep loving him. Keep loving each other. Keep posting so we can all be there for you when you can’t do it yourself. *hugs*
Peggy says
Wow. My heart goes out to you and your family. I never realized just how much you so continually deal with. You are in my thoughts and prayers.
Layla says
I don’t have any profound words or magical cures, but I just wanted to send virtual hugs to you and Tiff. While this was sad to read, it was also honest — and I think being honest with yourself (and your friends and family) is the best thing you can do.
Teresa says
I definitely can relate and have empathy for you. I swear our autistic children and families sound identical. Thanks for fighting on for the autistic community even though some days are unbearable. I really appreciated Christopher’s words. Thank you Christopher.
chacha says
This was tough to read – I cannot even imagine how your family deals with this on a daily basis. It’s one thing to have an occasional episode every few months or something. It’s another thing for it be all the time. I can understand (well, as best as someone outside can) the situation you are in as far as care goes, because as he gets older, stronger/bigger, without improvement in his condition, it will be harder to manage it on your own. Anyway, I hope you’ve had a better couple days since this post.