Tuesday, June 21, 2011

What is "normal"??

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.


MOM B said...

I love you, hon, for being so dedicated to finding help for your child. Max loves you too for helping him. Mom

MOM B said...

Max is blessed to have you and Joey for parents. Hard as it may be, you two are the best parents Max could have. Keep your spirits up. We love you.

Jen Johnson said...

I totally understand what you mean. We still don't have any specific answers for Caleb yet either and it gets harder and harder every day to stay positive. I'm sorry Heather. I wish that Max didn't have to go through all these things either, but just like you said, would Max be Max if he didn't? I keep telling myself not go off of the what if's in life. It's hard but it is helping. Stay strong and I agree. Max and Luke are blessed to have you and Joey for parents. Keep your head up!

Matt N Karen said...

I had no idea you were having such a struggle with Max, and don't worry I won't ask. Anytime you want to hang out with non-normal friends, give me a call...we are definatley NOT normal! Hang in there, you are an awesome Mom!

jessica said...

I hear you, I understand you and I know EXACTLY how you feel! Hang in there! We all love you!!! It's so wonderful to have the perspective we do, sometimes it's just taking a glance up from the trail - in front or behind to realize just how far you've come.

PS - and "normal" doesn't actually exist;).