Long time no write! I’m glad I remembered my password to get in here. Last time I blogged was in December, the day after the second-annual Operation Jack Marathon. I thought I was going to write a follow-up blog the next day. Yeah, maybe not.
Quick standard disclaimer, if you’ve never been here: I’m an ordinary guy, married father of three, and I go to work every day. My claim to fame is that I was the state math champion in the 6th grade. I also ran 61 marathons in 2010 to raise money for Train 4 Autism, because my middle child (8-year-old Jack) is severely autistic and there is nothing I wouldn’t do to take lemons and make lemonade.
In all fairness, I’ve been a little busy since then. Something about getting a new job and relocating my family to the Denver/Boulder, Colorado area. I started a new job here on March 1. But I got here three weeks before my wife and kids did, so I had to do everything I could in a hurry to prep for the move before driving out from California. Then, I spent three weeks trying to get settled in.*
* Getting settled in: I slept on an air mattress, ate oatmeal and frozen burritos and pirated wi-fi off a neighbor from my vacant house. No TV, no vegetables and no furniture other than two bar stools.
It’s been a bit of a transition for us, but we’re getting used to our new home/school/job/routine/etc. and I felt like finally blogging again after what we went through yesterday. I miss sitting here on the couch typing away while my wife watches terrible TV shows (I dumb be getter by background hearing Real New Jersey something Housewives). Maybe this will get me kickstarted into blogging again? Or maybe nobody cares, not even my mom!
Anyways, now that April is gone and Autism Awareness Month is over and everybody is putting their blue candles away, I felt like posting something about how autism still sucks, as evidenced by what we did to ring in May.
Yesterday: Traumatic x 1,000
We set up an appointment to get Jack an EEG. There’s a chance he’s having seizures and that’s something we need to get checked out. So, we had an appointment for yesterday morning. To prep Jack, we needed to bring him in as sleepy as possible, per our doctor’s instructions. Tiff texted me during the day and told me that we had to keep him up until midnight and wake him up at 4 a.m. On paper (well, on phone screen), that seemed like something we could do and we’d just deal with it. The way we did it was to throw him off his routine by feeding him meals late, bathing him late, keeping the house bright and throwing a movie party for him.
I wasn’t looking forward to everything, because I knew it wouldn’t be easy, but on Monday night I came home from a softball game at about 9:40 and it broke my heart to see him sitting there watching a movie and eating popcorn. Not only did he have no idea what was coming, but he should have been comfortable up in his bed, getting some sleep. Instead, we had to wreak havoc on his body clock for his own good.
He was a trooper, as was Tiff, staying up waaay past me. And they both got up waaaay before me. Tiff wanted to be up with him when he went to sleep and when he woke up, and will be the first to tell you that if I have to go to work, there’s no sense in us both being super-exhausted and tired.
Anyhow, we took him in to Children’s Hospital here and everything was fine. And then we went back into the room. I had to physically hold his head in place while the EEG tech put 25 little electrodes on his head, plus a couple on his chest. Tiff had to straddle him and hold his arms and legs down. I would say he was upset, but that would be an understatement. He had a look of fear in his eyes that will stick in my mind and make me lose sleep.
Because of the severity of his autism, we can’t communicate to him that we’re actually helping him. We told him “Mommy help head … Daddy help head … ” over and over, but it was no use. He was crying so much, his ears were filling with tears. I looked down and couldn’t help but think to myself how unfair his existence is. Now, I know, plenty of kids have it worse than him. But here he is, 8 years old, through no fault of his own going through this.
He should have been at school, out on the playground, playing basketball and talking to his friends. But this was his existence, Children’s Hospital, some EEG room three hallways back, his parents physically restraining him while a stranger stuck things on his head. He had no clue what was going on and couldn’t say a thing about it to us. All he could do is cry. And as Tiff always says, he cries every day — way too much for a kid his age.
Once all the electrodes were on and they wrapped up his head, he calmed down about 10 minutes into the procedure. Tiff stayed up there on table with him to keep him comfortable. They collected enough data to make the procedure worthwhile and we’ll find out more within about a week. So, it was a success, I guess. A deeply upsetting, traumatic experience for the three of us, but a success for all intents and purposes.
It just kills me that we go through this. Well, that he goes through this. Unpredictability and sadness come with the territory when you choose to be a parent. One thing I want to add is that when it was all done, he started to get happy and giggly. You’d really have to know him and Tiff to understand, but I sat there and watched as he looked at her. She has become such an incredible mom since I met her 17 years ago when she was an 18-year-old hottie who caught my eye. It just blows my mind what she’s turned into. My kids are blessed to have her, there’s no doubt about that.
The thing, though, was the way he looked at her. I can see his unconditional comfort and confidence and trust in her and it’s beyond words to me. He needs some comfort in the cruel world he lives in and he gets it from her. To be able to stand four feet away and see that is priceless, something that makes parenthood and marriage worth all the gray hair I’m getting.
Anyways, that’s all I’ve got for today. I’m still running and doing charity things and I’ll try to touch on those in my next post … hopefully tomorrow? Can I actually make a habit out of this?
Thanks for reading and have a great Wednesday!
Rachel says
Of course, I’m crying as I respond. Thank you for sharing this as the more you share with the world, the more people understand autism. Over the past year, I see autism-related stickers and signs everywhere and I always think that you (and Tiff and your kids) are a big reason why more people are gaining awareness and trying to do something to help those directly affected by it. It kills me to read about Jack undergoing the procedure but you are right- Tiff is an incredible mother for bringing comfort to him during that time. I hope the test yields results; continued thoughts and prayers go out to you and your family.
Alma says
Just like Rachel, I too am crying. Thank you so very much for sharing your lives and personal experience with autism. From what I do remember about Tiff, yes she is an amazing person. You are all very lucky to have her in your lives. 🙂
Heather says
we go through the same thing every few weeks for Gab’s chemo – every single time she requests no sleepy medicine, and every time, she gets it, and she’s pissed. But we have a finite date that this should all be over. Man. I can’t imagine how much tougher it would be in your shoes.
You and Tiff rock.
Missy says
There are so many different realms and difficulties when having a child with autism. We do need to keep talking about it and keep making the world around us aware.
I pray that you are able to find some answers.
Evelyn says
My fourth child was born with ceberal palsy mental retardation autism and he had every seizure disorder that excist He passed away 8 yrs ago coming this oct he lived to be 29 yrs old .I can only say stay strong and never give up these children are a gift from God.
I would do it all over again if I had to I Jamie was no 4 of 6 kids.
It was not easy my marriage broke up my older boys resented all the time I spent with him.But I had two children after him and they were a blessing my daughter was the youngest and she helped me until the end.
It was not easy but as Jamie grew and meds were straightned out and good drs and my job.It became good the lat 10 yrs were the best my son only cried once in his intire life but he learned to laugh and he was full of fun as time went by.
I miss him dearly he made me to be the person I am today there is a reason for all things.I am now 64 and I still feel the pain in my heart from his loss .
I want to incourage you that you are the right parent for a special child like ours
God know what he is doing and he will not give us more than we can bear even though we feel we have had enough.
Love your child forget about house work fight for better programs and cry it out when you have to one of my older sons was border autism he is now a police officer and the father to two wonderful boys.
Childhood with him was awful but he made it.
God bless you and may God send his angels around you sincerly Evelyn
Jason says
Sam – Seven years ago, I could have written this very same account of the EEG test. All the blood testing, EEGs (a week in the hospital for two of them,) therapies – speech, behavioral, nutritional, etc… it is maddening. Jack is blessed to have involved parents that love and care for him. You’re right. Autism still sucks.