Guest Blog: Tiff Speaks Out About Jack

Tiff told me last week she wanted to write a guest blog for today, so I said no problem. These blogs take time to write, so I’ll gladly take a break! Plus, I missed my flight home yesterday and got stuck in Spokane, Wash., so I guess that as of posting this, my weekend isn’t over so I can’t really post a weekend recap, right?

First real quick, just in case this is your first time here, I’m a father of three and a marathon runner and my middle child, 6 1/2-year-old Jack, is severely autistic. This year, I’m trying to run 60 marathons to raise money and awareness for a charity called Train for Autism. So far, I’m through 33 of the 60. I ran yesterday in Missoula, Montana. You can read my recap here.

And real quick, most of you are very aware of the Chase Community Giving contest we’re in the middle of. If you weren’t, the banner that loaded when you hit the site probably made it pretty clear. Well, today is the last day of voting. And we have a fighting good chance at winning $20,000 if we stay in the top 200. But by no means do we have this in the bag. Lots of groups are making last-minute pushes and I’m worried about what’s going to happen today.

So please, one last time, if you haven’t voted, PLEASE VOTE TODAY! And please share this on your Facebook wall or share it on Twitter. If you want bonus points, copy and paste this into your Facebook status for today:

———-
Today is the last day to vote for Operation Jack in the Chase Community Giving contest. Help this great cause secure the $20,000 it stands to win by voting once at http://operationjack.org/chase if you haven’t already. Every vote is CRITICAL and yours is needed! Please copy this and use it as your status, just for today!
———-

We’re all done with this after today. This is like mile 26 of a marathon, and I always turn it on and power through the finish. Join me and help us make it happen today!

Oh, one last thing — Tiff took this video of Jack. When she says, “say ‘for’,” he heard “four” and said “three” instead. Cute little guy!

OK, on with what Tiff wrote.
——————————–
What does your child call you? Well, most times I’m called “Daddy”, “Miss Ann”, “Miss Doreen” (Miss Ann and Miss Doreen are two of his teachers), or nothing at all. If I prompt him with the “m” sound, then I will hear the music to my ears, “Mommy.”

Nearly seven years ago, Sam and I thought I gave birth to a healthy baby boy and a brother for Ben to play with. And for 18 months we continued to think that. After we were told to seek help for Jack at his 18-month well check up, our lives changed forever and everything has seemed to go by like a flash of light since a fall day back in November of 2006, when we heard the words “moderate to severe autism.” The neurologist told us that if we were to leave the room for two days, Jack wouldn’t even notice. I couldn’t fight back my tears.

Flash forward to 2010 now. I’m changing my 6 1/2-year-old’s diapers, buying him toys in the 18-24 month old toy aisle of Target and most of the time, putting him in a stroller every time we go out. I also wake up for him in the middle of the night a couple times a week to calm him down and to keep him from punching himself in the head from what I think is frequently stomach pain. Other times, I don’t know why he screams and cries. Imagine your child going through some type of pain, and then putting a big piece of duct tape over their mouth. That’s how I feel because he can’t tell me what’s causing him to cry. I’ll lay there next to him wondering, is he crying because he feels like he doesn’t have a voice? Does he feel like he’s trapped inside of his body and no one under stands him?

Tiff wanted me to embed this video for you to play while you read what she wrote. She’s the boss!

At night when I tuck him in, I lay there next to him and look into his eyes. I’ll talk to him and tell him that I love him and am proud of him and sometimes I’ll even say, ”Jack, I know you hear me right now, I know you know I love you and I’m so proud of you.” He’ll just lay there with an empty glare on his face and I get no response. But you never know, maybe he does understand me. And if he does, maybe in the future, he’ll be able to tell me how he remembered me always saying those things to him when I tucked him into bed at night.

I know or at least I think he understands I’m his mother. But what he doesn’t know is that I just took on the new role of becoming his “at-home doctor”. The “doctor” who’s going to fight through any fire, who’s willing to take on the new responsibility of this new DAN protocol. A protocol that involves giving him around 15 different supplements on a weekly basis, from creams, to drink mixes, to B-12 injections. I want to know at the end of all of this, at the end of my life, that I did everything that was realistically possible to save my son from this sad, sick and mysterious disorder.

With autism you don’t know for sure what the cause of it is. There are a lot of theories out there, some even backed by science, but it’s still a mystery. With other genetic disorders such as Downs Syndrome, you know what happened in the body. With autism, you don’t know for sure. Because of that, I feel like pulling Jack out of this is all on my shoulders. The thought that I have a chance to help him “recover” from this is, to say the least, very stressful and very pressuring. It’s all worth it to me though.

I have a magnet on my fridge that reads,”You can’t scare me, I have children.” And that’s exactly how I feel about fighting Jack’s autism. When you’re a mother willing to do anything for your child, NOTHING scares you.

Everyday brings a new challenge for you when you are a mother. My challenges with Jack at times seem to never go away. It would make my day if he would let me read him a book for longer than one minute. Pointing to pictures and getting him to label is how we read books together. Most of the time, all Jack wants to do is look at baby numbers books, often times carrying it around for days at a time.

Another challenge is getting him to eat more food. Jack has yet to eat a PB&J sandwich, or any sandwich at all for that matter. He won’t eat anything he hasn’t eaten before. Well, maybe once or twice a year he’ll try something new. I see kids enjoying watermelons in the summer time or enjoying a piece of their birthday cake and I want so badly for my Jack to be able to enjoy the same thing. Right now, I’m rotating about 10-12 different types of foods.

Just last month I was sound asleep at seven in the morning and was woken up by the sound of my door bell ringing. Jack had figured out how to get out the front door by opening up the top latch with a kitchen chair and a book. I quickly had a dead bolt requiring a key installed on the inside of the door. Now, whenever I need to do something as small as getting the mail, I unlock myself out of the house, making sure I bring the house key with me on the way out. If Jack ever were to get out, he would walk to the next city if he could and he wouldn’t respond to his name nor know how to look both ways when crossing the streets. Letting him out is a risk I can’t take.

I can go on and on about the challenges I face with Jack on a day to day basis. But my biggest challenge I have is getting through the pain everyday. If I really wanted to, if I let myself, I could stay in my house all day and cry my eyes out until I couldn’t cry anymore. In fact, when I do allow myself to let it all out, to let out everything I bottle up inside of me day after day, I lay on my bed usually when the kids are in bed for the night, and I cry. I cry really hard into my pillow and I ask God, “Why? Why my baby boy? Please, please God, wake him up.” I ask God to wake him up because I’ve always looked at him as being partially in a coma. I lay there thinking, is this really happening? It seems like one big nightmare. I know that God blessed us with Jack for a reason and that he’s a blessing. But I HATE the autism. I look at it as an evil monster that I need to fight away.

Looking at baby pictures and watching old videos of your child would make any mom happy, but not for me. When I look at his pictures from birth up to two years old, I think to myself that those pictures were taken before the accident. But there wasn’t even an accident.

Before Jack came into my life, I never had a problem seeing “special needs” adults walking together in their groups with each other. Now, seeing a person sitting at a bus stop talking to himself is almost like looking through a crystal ball at a 50-year-old Jack. On the verge of tears when I see that, most of the time, I quickly snap myself out of it. I get this feeling that comes over me. Some would say it’s denial, but the feeling I get is a feeling of “fight.” And I think to myself, no, that’s not going to be my Jack. To me, one of the worst feelings is the feeling of regret. I don’t want to be a 70-year-old woman one day, looking at my 42-year-old son, thinking, “what if?” What if I’d done everything I was capable of doing to help him recover from his autism?

I realize that opening myself up this way, is also setting myself up for criticism. There will always be people out there who think I’m not doing everything I could be doing for Jack. Or maybe, I’m not doing something the right way. I’m not sure if there is one particular right way to “fix”, “cure”, or “take away” your child’s autism. But I know that I’m doing everything I can for Jack and that my will to try and pull him out of this will never die.

I wanted to write this for one reason — I want everyone to understand WHY they cast their vote for Operation Jack. I wanted it to be more than a popularity contest with the charities getting the most votes winning. All people hear when they support others’ charities is, “It’s for a great cause!” Well, this is for a great cause. I always dream of the day I wake up, and hear on the news that doctors finally found what really is causing autism and that finally, a cure has been found.

Jack has had behavorial services six nights a week, two hours each session since he was 2 years old. We’ve seen amazing progress from it but I’m starting a new journey with Jack now — the biomedical journey. I pray to God that we will see a different, less severely autistic person in the future. I know that constant prayer can be powerful. And I know that the day I’ve been waiting for will come. The day when he comes up to me and says, ”Hi, Mommy. I love you.”