Fear

What if James doesn't get better because I’m too afraid? Because I have so much fear of what the future is going to bring that taking that first breath in the morning is something that I have to motivate myself to do? There are so many people out there who know what I’m saying and know how that feels.

But I do get up, I take my shower, get dressed, let the dog out and make Chris lunch. The part of my day that is so simple and normal, so easy, I’m lucky to get to start my days like that.

James swinging in the back yard wearing his particular socks

After that the real day starts and the constant anxiety over what MIGHT happen that day. The worry over the things that could happen. The dread of what will happen. What if today is one of the days that James has a hole in one of his socks (he has a certain kind of socks he likes)? What other socks will I be able to get him wear? How are we going to pay for new socks to replace the ones with holes? What if today is the first Tuesday of the month, when we have to pay preschool tuition? What if today is the day that Chris’ car finally gives up the ghost on his way to work? How are we going to be able to get him a new car? How are we going to pay for all the little extras that comes with life? If I don’t get up and I don’t start the day then I don’t have to face any of that.

Is dreading the status of my son’s socks worth getting him dressed in the morning to go to therapy? The sock thing is a more recent behavior of his, so until this point, on the day that I did find a hole in one of his socks, I didn’t have to worry about where I’m going to get $5 to buy him a new pack of socks. But now I do.

While he was at work we heart attacked daddy's car! (2011)

The day moves forward and after getting the twins dressed Chris leaves for work. Now this one is scary, a frightening kind of fear. Chris’ car is literally falling out from under him. (It was some spring thing by his wheel; Chris said that if you laid down on the ground you could see it.) What am I going to do if something falls off again and Chris or someone else gets hurt? And if everyone is fine what are we going to do about the car? How are we going to be able to fix it? How are we going to be able to afford fixing it? Or worse, what are we going to do if we need to get Chris a new car? I try really hard not to think about this. But we do have Chris’ dad, who has been able to teach Chris a lot of car maintenance so we’ve been able to take care of it the best we can. I just close my eyes and knock on wood that it will make it to the end of therapy, to the end of the day, without totally falling apart.

Off to our first day of preschool we go!

Every Tuesday and Thursday come with more fear. Preschool.

I drop him off and then it's two hours that I pretty much sit staring at my cell phone, usually while sitting in my van, waiting for that call. The call that tells me to come pick him up because they can’t get his behavior under control, that he’s being too “autistic.” Then I would pick him up and we would go under a rock and hide (most likely coming out to grab Lily so she can come under the rock too). Thankfully this hasn't happened. Yet.

Why am I sending him? The rock sounds so much comfier than the outside world. Here he won't disrupt the class or impede the learning of other children. We were able to find a great teacher who was willing to, and wanted to, work with us (she actually taught James' uncle who did ABA when he was James' age). But if those things happen will it ruin it for the next child who needs a place to learn? Why risk it?

James has a therapist that goes with him to school. Having her there costs more than preschool tuition for Lily and James combined (she's worth it though). Sending that check with the twins the first Tuesday of the month makes me want to think that what I’m doing is just pretend. Is preschool going to be worth all of this if his behaviors don’t stop? What if his crying gets worse? What if he refuses to do the things that the rest of the class does? What if they ask him to leave? Should I take Lily too? Do we give up? Do we try again next year? Will my fear of all those things happening be the reason that will cause James to not be a part of society?

James and his shadow, Jenna, doing an art project  at school.
We are more than lucky, we are blessed, to have Jenna in our life, to be with James, to go to preschool with him and be his contact to the outside world. She knows James better than anyone else, she's what makes it possible for me to send him to preschool. She's confident in him and in me. We love her. (Now if only I could give her health insurance...)

But he has to do it. He has to learn how to interact with his peers, and with other adults. He has to learn to follow someone else’s schedule. Learn that there is a world on the outside, and that we’re doing all this because we want him to be with us. We’ve been working so hard, putting all of our time and money, and the time and money of other people, into this. What if I am so afraid of what James MIGHT do that I decide not to send him and I waste all of it?

Left: Gizmo one week after surgery.     Right: Gizmo five months after.       

Can you tell? Cause I can't.

Then we bring in all the extras, things like the dog or getting Lily a new dress for church. When Gizmo hurt his eye a few months ago, he had a “crater-like” laceration that would need a graft to fix, it was going to cost A LOT. Removing his eye would have cost almost as much. Putting him down would cost a tenth. Gizmo was the first thing that James recognized as “alive” other than humans. He’s only five and has a lot of miles left in him, he’s not a disposable dog, but fixing his eye would cost almost as much as a month of therapy. Here is where the fear comes creeping in, does fixing Gizmo's eye mean that I’m choosing my dog over my son? The fear of the situation, of deciding what to do, was one where I couldn't stop the tears. I did consider putting him down, I did. It was so much less money. The loved ones around me made me banish the thought. And we were so lucky. Five months later and his eye looks great, you would never have known, and the vet’s office turned out to have interest-free financing. I am so grateful for those who told me it was ok to fix Gizmo, and that doing it didn't mean Gizmo was more important than James. I am so grateful that I didn't have to give up my puppy.

Lily needed a new dress for church. I couldn’t find one at goodwill and her cousins didn’t have any that fit her. Then Sunday comes and we go to church and during the quiet parts James starts singing the ABC’s. Yes, it’s cute and everybody understands because they know that James has autism but it’s still scary. What if James falls off the wagon and loses it? What then? Stand up and leave? So what does it matter if Lily has a new church dress if we’re just going to end up missing church because those things that might happen are going to be too disruptive? Thankfully we have Costco and a loving auntie.

Lily's new church dress from auntie

James being silly during therapy

Here comes the time to write out the budget. It's not even a budget, it's a list of stuff that we pay to each thing every month, no setting anything aside for fun or the future. Those numbers make me wish that I didn't know how to do math. More fear and more dread. I look at those numbers and think, "If we cut out James' mid shift each day we'll save this much each month..." "And if we do that, we could cut out Friday and Saturday nights because no one wants to work those times anyway.” Right there you have a car payment, the payment for Gizmo's eye, and preschool tuition.

Jenna and James on a preschool field
trip. 

Thinking about that money makes me think about the week when 3 of our 4 therapists were sick so James ended up missing 6 shifts plus a day of preschool. It's compliance that James loses. He won't do anything we ask him to. Once we do regain his compliance we spend so much time reviewing things he has learned (to jog his memory) that we aren't able to progress in any of his programs.

All the fear keeps coming back, circling the one topic that sometimes seems worse than James’ diagnosis. Money.

I wish my fear came from haunted houses and not paper.

Keeping Gizmo company after his eye surgery

James couldn't say Gizmo’s name this time last year. I remember when we had had days where we hadn't heard James' voice at all. Not even a grunt. The thought of him walking into school and having him say "Hello" to the teacher was one that was completely foreign to us.  We would have never thought that James would be saying "Hi" to his grandpa and uncles while they're singing with the choir at church. He didn't know these people, he didn't know that these people loved him.

Money, no matter how much it scares me, how much fear the math puts in me, the anxiety it brings me, the nauseated feeling I get from dreading the future, and no matter how much it makes me worry, has to be spent. I have to put my fear aside because I know that it's going to be worth it.

At this point, money for therapy is what will make the decisions in our life, but hopefully, HOPEFULLY, happiness is what will someday make the decisions in our life. And James' voice WILL be part of those decisions. His happiness WILL matter and the size of our bank account won't.

They love each other, can't you tell?

There are links on the right side of our blog where donations can be received. Here is our post explaining more about how to donate: http://blog.heuerfam.com/2012/09/donations.html (And Chris wrote this post, he's such a good daddy.)

We also have a donation jar at Maui Chill in Lehi, Utah-

mauichill.com
Maui Chill has been great. On James' last birthday they let us
come in before the store opened so we could take him there
without having to worry about a public meltdown. We were
able to try to get James to try different flavors of their frozen
yogurt, he wasn't too keen about any of them and we ended
up with a big cup of toppings. They also helped arrange for
James to meet Santa Claus. Santa came to Maui Chill but we
didn't go because I was too scared to take James to a place
where there were going to be a lot of people. So Maui Chill
brought Santa to us (Santa came to our house).

(James at Maui Chill on his 3rd Birthday)