Do you ever find yourself watching one of those “health” shows that is basically a free freak show? The show consists of delving into the personal and private lives of people with mysterious and embarrassing diseases that no one would otherwise hear about. Sometimes I feel guilty that I’m getting entertainment from someone else’s pain. Anyway, during one such show, a mom of a girl with one of those taboo diseases said something like, “I wish my daughter had cancer. At least then, people would have actually heard of it.” That sounds terrible, but I really don’t think the mom wished her child had a horrible, painful, sometimes fatal disease. I think the mom was tired of painfully explaining the inexplicable to everyone about her child, reminding herself each time of her reality.
Now, let me say right now, I don’t wish cancer on my child either, and I know that our situation is way easier than a lot of kids, but I identified with this mom. I don’t know how many times I’ve tried to explain to people why Max has gone to so many doctors or why he’s in the early childhood program. The thing is, it’s really hard to explain something you don’t understand. I sometimes wish there was one word to describe Max’s delays and behaviors that would say it all and I wouldn’t have to go into a long explanation. More than anything, I wish there wasn’t anything to explain.
We have this awesome toy that makes all kinds of noise. It plays songs, has sound effects, and talks. The awesome part of the toy is that it comes with three volume settings. The lowest is so quiet you can barely hear it. If you are a parent, you know how blessed that is. Sometimes, I think it would be nice if I could lift up the back of Max’s shirt and flip a switch on his back to “quiet” or maybe “calm”- just for a minute. Then I realize that doing that would be turning off Max’s personality. If we got rid of all Max’s issues, would he cease to be Max? I’d rather have Max than a “normal” kid.
We went to see a psychiatrist today. Even typing that word just seems wrong. Why should a three year old see a psychiatrist?! Never in my wildest dreams did I think I would be taking my preschooler to see a psychiatrist. Of course, I never dreamt I would take Max to any of the places we’ve been. Have you ever played that game seven degrees of separation? That’s kind of what our little trail of doctors is like. We are getting referred to a occupational therapist by the psychiatrist, who was referred by our neurologist, who we found through our pediatrician who kicked off this whole process. I’m willing to bet when we meet the occupational therapist, she’ll refer us to a behavioral therapist. We’ve had a diagnosis train too- from autism to anxiety disorder, back to autism, back to anxiety, then possibly a genetic disorder, then ADHD, and now an impulse control disorder as a possible diagnosis. And guess what? Only one of those is covered by insurance. I bet if my kid had cancer I wouldn’t have to fight with insurance as to whether it’s a “real” medical issue.
Sorry for the rant, but being frustrated is part of life, and I don’t think it should be a hidden part. Frustration is what makes us learn and grow. I know that there is something for our family to learn from all this. There is a reason Max acts the way he does, and there’s a reason we have to work hard at getting help. I keep thinking it has to be hard now because the pay off later is going to be really huge. His IEP team is already taking bets as to whether he turns out to be a world renowned doctor, lawyer, or painter. It’s just hard to picture what’s on the other side of the hill when we’re still climbing. It’s hard not to concentrate each tough little uphill step instead of the overall progress we’re making. …sorry for the whining, I guess that was my round-about way of giving an update on Max.
Tuesday, June 21, 2011
Posted by heatlight at 3:36 PM
Tuesday, June 7, 2011
Don't you just love when a spur of the moment thought turns into a good idea?
I realized on our way home from California on Sunday that Max only had 3 days of school left. I've had good intentions of getting his teachers and bus driver (all wonderful, sweet women) something to show how appreciative we are of all their help for a while, but time got away from me. I thought of cute cookie or candy bouquets and other expensive presents. With a limited budget and an even more limited time frame (why are short weeks always the busiest?), I realized that would be hard to get done. I glanced at my coupons on the way out the door and found a couple coupons for some candy bags. It was fate! I came home (with an extra bag for me and Luke) and made these tags for the bags.
I know they aren't super fancy, and mostly I blame that on my dying printer. But I'm kinda proud of my puns AND it was fast, cheap, and easy. If you can't tell, the York one says, "We 'mint' to say: Thank You". I remember when I was teaching, edible presents were the best and I usually ended up throwing away all the cutesy wrapping that parents probably took forever to make. At least I know my hard work won't go to waste!
His teacher, aide and bus driver really deserve a lot more, but from what I remember from teaching, a little pat on the back goes a long way. We're so thankful for all the help Max is getting at school. It's such a relief to be in a program with great help and great people! We can't wait for next year!
Here's a template if you want to make the ones pictured. Joey did inform me that my "u" on the York tag still has the beginning of an "r"... if that bugs you, feel free to change it. Oh, and I punched a couple holes in the tag and bag to tie with pretty ribbon. I punched the holes in the bag above the seal so they know I didn't poison them :)
Posted by heatlight at 9:53 AM