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|
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)|
|Off to our first day of preschool we go!|
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?
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.
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|
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|
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-
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)