Pre-Trip #35:
Better Than Xanax...
I was talking with my employer’s “significant other” (read: girlfriend over 50) the other day, and she inquired about Billy. I proceeded to give her the details of his recent seizure and how we had immediately discontinued the medication that had been prescribed for his OCD. We also talked about how difficult it was living with someone who suffers with behavior issues (her mother is ninety and has Alzheimer’s.) Then she joked that perhaps
we were the ones who should be on the prescription meds!
I laughed because she’s probably right! Sometimes Billy’s stimming and OCD behaviors get so bad, it really can drive me up the wall. Yesterday after he came home on the bus, he was fixated on going to the library again. Well, I had things to do and after all, we had just been there two days earlier and he hadn’t even watched the DVDs he had taken out. He just liked to carry them around in a little tote bag, taking them out from time to time to read the back covers and stack them in a pile. But, he loves the children’s DVD and video section of the library. He would spend hours perusing all the offerings and making his selections if he could. He’ll take a video off of the shelf, open the cover, look at it, close the cover, read the back of it and put it back on the shelf. Then he’ll go on to the next one that piques his interest and he’ll do the same. Sometimes he can go back and forth several times before he will decide to put one in his tote bag. And we always need six; he knows that six are the limit he can take out, so we must always choose six.
Needless to say, then, a trip to the library with Billy is not a quickie.
Tricia doesn’t mind… she loves to read and after checking out her books she just sits down in one of the comfy chairs and reads until we are ready to go. It’s a bit different for me. I need to stay with Billy because he gets so utterly consumed with what he is doing that he doesn’t realize that other children are there and want to look at the videos and DVDs, too. He’s a big boy and will just walk right into a smaller child and steamroll right past him on the way to his next conquest. I’m afraid he will accidentally knock another child down, so I stay with him and orient him to the existence of other kids when they are standing nearby. Sometimes I have to stop him from grabbing a video right out of a smaller child’s hands… and then give the customary “please excuse my son” explanations about his autism to the child’s parent. In other words, he needs constant supervision.
As I said, I had things to do and dinner to make, so I explained to Billy that he would just have to be patient and wait until tomorrow.
Uh…yeah right, Kathy, that’ll work!
“Go to library?” No Billy.
“I need the library!” Tomorrow Billy.
“I want the library, please!” Sigh.
I am not kidding when I tell you he did this for
two hours. Oh, sure, he would stop for brief periods if I re-directed his attention to a different activity: doing his homework, jumping on his trampoline, spinning on his dizzy disc. Tricia even let him use her Video Now player in the hopes he would forget about the gosh-darned library.
“Go to the library!”
“Mom,Tricia, go to the library!”
She came into the kitchen and gave me an imploring look. “Mom, he’s driving me crazy!” she said. I gave her a hug and told her that I felt the same way sometimes, which is true.
Now of course I realize that there is no “magic pill” that is going to cure Billy’s autism. Even thought there always seems to be someone on TV or in a magazine telling parents like me that they “cured” their autistic child with diet or vitamins or something-or-other and now the child attends regular school and “no one can tell” that he’s autistic. Well, not to sound pessimistic, but I think that’s wishful thinking. These therapies may help, but they are not a cure. Billy is autistic and there’s no diet or vitamin supplement that will change that. Been there, done that, know it for a fact.
But, I do have to admit that I had been cautiously optimistic when he started taking the medication for the OCD behaviors. As a nurse, I know that psychotropic medications do work and they can do a lot to improve a patient’s quality of life. If something could be done to just “fix” this one little piece of Billy’s autism, it would do a whole lot to improve the entire family’s quality of life. Well, he was on it for four months and none of the behaviors changed. Then came the seizure, which is included in the list of possible side effects of the medication. So….there goes that.
It is a bit depressing.
Somewhere I remember somebody saying, “If Mama ain’t happy, aint nobody happy!” It sounds funny, but in fact, I think its true. As the mother, you are really the heart of the home. And even when that heart is aching, it needs to go on beating strongly for the sake of the family.
I am really blessed in that I have been able to work only part-time in recent years. I work three, sometimes three and a half days a week and one Saturday a month. It’s the best of both worlds. I get to practice my profession and get out of the house and mix with adults. Those of you who have ever been home 24/7 with babies or young children know how refreshing that can be. And of course, the second salary is important to the family finances and the Disney Fund.
But, I also get a day or two each week when the kids are off at school and I am home. That is so very therapeutic! The doctor’s friend joked about it, but I feel these regular little “breaks” from motherhood do more for my mental health than any pill. Just having a few precious hours of freedom to do whatever I want to do, whether it’s work or relaxation. If I want to go shopping for a new pair of shoes, I can do it without dragging the kids along to the mall. If I want to go back to bed for another hour of sleep or sit in my pajamas and read trip reports on the DIS, I can do it in peace. I can make a hair appointment or a doctor’s appointment if I want. I can take Aimee for an extra long walk if it’s a nice day. And yes, I can even do laundry if I’m falling behind. The point is… its my choice how to spend my time and that makes the many hours in which my time is not my own more bearable. Yes, I am truly blessed.
Now, if I only figure out how to put that into a pill so all mothers could take it… I’d be a billionaire!
Kathy
Coming Soon: Pictures of My Loot (I was going to write Pictures of My Booty, but immediately thought better of it.)
I am so relieved that he can get checked out before we leave for WDW....
The cuties lanyard just did me in... I think those are adorable! I 
Eeyore. 
soo happy you got an appointment for Billy.
That was wise in this crowd.
