I Hate Autism, Part 257

2:57 is a time I liked a lot when I ran the Boston Marathon in 2011. It was a new personal best for me, the first time I was able to cover 26.2 miles in less than three hours. 2:57 is a time I really hated yesterday, though. It’s the time I woke up yesterday morning to hear my son Jack having a meltdown, hitting his head into the wall in his bedroom.

If you’ve never been here before, click here to see why I even have this site. It’s because even though I don’t have autism, like Jack, I will fight autism for the rest of my life. I will fight it because Jack has it. Severely. He’s about five weeks from turning 9 and he doesn’t really talk and he’s still in diapers. Some people like to throw out the cliché he might have autism but autism doesn’t have him. That’s not true, though. Autism has him. It controls him and owns him and defines his every day. But I’ll get back to that in a minute.

He woke up at 2:57 a.m. Maybe actually earlier than that, but that’s when I first heard him. I was going to be getting up to run at 4:30 a.m., so when he wakes up in the middle of the night like that, my wife Tiffany goes and takes care of him. Usually, that just means laying down with him until he calms down and goes back to sleep. It takes an average of 30-60 minutes. For most parents, that kind of stuff stops somewhere around 6-12 weeks after your baby is born. Jack turned 464 weeks on Tuesday and we’re still getting up several times a week.

This child was not born with autism.

That’s part of the territory of parenthood — you never know what you’re going to get and there are no guarantees. But that doesn’t have to make me like autism. Tiff went and stayed with him and for whatever reason, I just couldn’t fall back asleep. The more I got antsy about not falling back asleep, the more wide awake I became. Tiff came back to bed after maybe 30 minutes or so. I couldn’t fall back asleep, though, and at about 3:55, I finally just decided to get up and get on with my day.

So, on 4 1/2 hours of sleep, I got up and got going with my day. The first thing I do every day is read a devotional I get in an email and forward it along to my wife, along with some comments talking about how I think that devotional applies to our life. I also draw her four little hearts, one for her and each of the kids, because I’m a cheeseball like that. I never share these with anybody, but today, I’ll post what I wrote to her yesterday, because it’s kind of relevant to this blog. The devotional talked about showing compassion to those who need it.

In reading this, I thought, man, we’re the ones in need of compassion. We’re just getting beat up and beat down on a daily basis and it gets tougher and tougher by the day. I don’t even know what to do or say or think any more. All I can do is pray that God makes it better for us and Jack. I don’t even know what to think any more. I think for the first time ever, I mentally threw in the towel on my life this morning, thinking that it’s always just going to be exhausting and miserable until I die. I don’t even know what to say. I just need to be stronger and find the blessings in every aspect of everything I do.

Sorry for being such a downer. This is the first time I’ve really felt this much despair. I don’t even know what to think.

I’m probably not going to run. If Jack doesn’t fall back asleep, I’m going to lay down with him. I want you to get some sleep and be well rested today, plus really, I’m probably too stressed out to go run anyways.

I love you. :)

@-}—– <3 <3 <3 <3

And sure enough, Jack wasn’t going back to sleep, so I went back upstairs to lie down with him a little before 4:30. He wanted to get his day going — I caught him out of bed. But he knew to lay down when I went in the room and when I’m up there next to him with my arm around him, he doesn’t try to get up. So I just stayed there. I started getting upset. In general, I’ve been numb to the whole autism experience. It is what it is. I just move forward and do the best I can with what I need to do. Tiffany gets upset enough for the both of us.

I pray every day for Jack. Please God, please help Jack with his autism. Please let him learn how to talk and communicate with us and play with his siblings. Please cure him from the internal problems he has every day. Please take away his pain.

But yesterday morning, that changed a little bit. Please God, please do ANYTHING to help this poor little boy! I look at him and wonder what goes on in his mind. It upsets me to know that he wasn’t born this way. 3,250 days in this world and he’s cried during every single one of them.

It’s a nightmare than him, Tiff and me will never escape. Ben and Ava will move on and have their own homes and lives and families someday, so they’ll be OK. This will just be a part of their childhood and something that affects their brother and parents. It won’t consume and overtake their lives like it does for us.

Anyways, eventually Jack fell back asleep. As did I. I didn’t run. Like I cared.

Tiff had to wake him up a little before 9 a.m. He spent one of the final days of the summer break following his third-grade year with two separate sessions of intensive ABA therapy. Tiff has spent every spare minute she’s had over the past week or so preparing for an IEP meeting we have for him on Friday. This isn’t normal. But it is in this home.

I know that other kids have worse disabilities. I know that other parents have buried their kids. But I still hate autism. Always will. I’ll never find the positive in it. I feel like my son, while still alive, has lost his life. It’s given me an avenue to use some physical gifts I’ve been given to help kids and make the world a better place. It’s made me and Tiff stronger people. But that’s not enough.

When I was putting him to bed last night, I just sat there looking at his eyes and his flickering eyelashes as he stared at his iPad, watching a Baby Einstein video (which are geared toward kids around 2 years old). I was wondering what goes on in that little mind of his. I was mesmerized by his innocence. He started to make a little bit of a noise under his breath that seemed like frustration and I took my glasses off just in case he decided to head butt me. He does that, and it hurts. I’ve gotten black eyes from him in the past and I’d rather have that than broken glasses.

Jack at bed time last night.

Nothing happened, and a little after 9 p.m., 18 hours after the day began, he went to sleep.

This morning, he was up a little after 3. I think Tiff went in with him for about 30-40 minutes but she was exhausted and needed to come back to sleep. I went in with him for a few hours and he didn’t fall back asleep. It’s 7 a.m., I’ve been up for 3 1/2 hours, no running (like that matters) and I’ve gotten one vicious skull-to-skull head butt so far. Tiff is making coffee and she’s going to need it. She has a few meetings today to prepare for Jack’s IEP, plus Jack has therapy, plus we have two other sweet children who probably wouldn’t mind some attention.

Just another day in the vicious cycle. Here we go again. Reason #257 that I hate autism.

Comments

  1. Kaleigh says

    I know exactly what you are going through… My little brother, who just turned 9 last month, also has autism and is still in diapers and has random and sometimes violent out bursts with his tantrums. His social skills are very limited as well. Reading your blog reminds me that were not the only people out there having a tough time. You always read the stories about how amazing people’s children with autism are doing, when in actuality it’s not all the simple. Hang in there the roads get tough, you just need to keep your friends and family close and talk to others who will understand you and your family and have open ears…
    ~Kaleigh

  2. says

    I hate it for you, your family and everyone else affected by it. There are no words. I admire your honesty to share such raw and emotional stories. Your little Jack has such a sweet little face. I pray there are more 2:57 finish times and less 2:57 wake up times in your future.

  3. Jake says

    If a genie ever showed up on my doorstep and would grant me one wish, I know what it would be.

    Keep going Sam. You & Tiff & Jack are there every day, but know that you’ve got an army behind you. Praying and hoping and wishing and working and running to support you along the way.

  4. Heather says

    Being strong people is kind of a cold comfort, isn’t it? I mean, I’m guessing you would totally take being way less strong, if it meant life wasn’t this? I sure would.

    But it is what it is. You do what you can, find happiness where you can, and deal with everything else. Because there’s not really another choice.

    And sometimes, days like this, they just happen. Yesterday, getting off the freeway after work, I hit a red light, and just started bawling. No reason, nothing new or different was happening. And I am not a crying type. But I guess, eventually, it just happens. You can’t just accept it, every day.

    I guess I have nothing really helpful to say, just.. I had that same day yesterday. I hope his IEP goes well, and you all get some rest.

  5. Cherry Misra says

    Thankyou for this very very honest account. I wish more parents would do the same. This pretending to be positive is just stupid, when peoples lives are being destroyed. The public health, medical, pharma cartel must just love the positive people; it helps them to keep getting away with this epidemic which they have caused and covered up. One other result is that many people, including doctors have absolutely no idea what autism really is. They think it is some cheerful little toddler, sitting playing in a corner, not answering to his name. In my opinion, the parents who want to maintain an ever positive attitude, are confusing their own approach with what the child feels. The two are completely separate issues. Some of these kids know very well that they are experiencing a really lousy life and experiencing a lot of pain and discomfort . It is cruel to pretend that because you are keeping a positive approach this does not exist. For the child it exists. I do understand that a parent may do this in order to maintain his own psychological well-being, but we need people who can face the truth and come out into the ring fighting. Whenever I go to the U.S., I am shocked to see the parents who go on denying the reality of this epidemic. Im sure they go on blythely feeding their children fish laced with mercury. Would it be nice for parents of diabetic kids to feed their kids sugar with a spoon? We can go to Mars, but our scientists cant even understand simple chemistry and the folks in charge make sure that the mercury toxicologists are not invited to the forums of discussion. Will a civilization that behaves like this not collapse?

  6. Stop the lies says

    Ugly truths, beautifully written. Thank you for sharing, and I wish Jack progress, and alleviation of his suffering. Send a copy of everything you write to your legislators. The 3 autistic members of the federal autism committee (IACC) claim autism is something to be proud of. You need to help keep it real for our elected officials.

  7. says

    Have you had Jack scoped to see if he has autistic enterocolitis? Too often these kids are in pain and they scream and cry and adopt odd postures or stim to try to cope. Melatonin can help if this is a simple sleep cycle issue…Good luck. Yours in Autism Hating, Janet

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