Saturday, November 29, 2014

Once you notice you've walked off the cliff

In cartoons, often characters walk or run off cliffs, being chased or chasing someone.  In their world, unless you look down, you don't fall---you run along nicely in the air.  It's only when you notice you've left solid ground that you fall.  I've been feeling like we've looked down, and we are no longer able to walk on the air.  We are thinking non-stop about when Janey comes home, and how we will be able to keep running now that we've noticed we are off the cliff.

I tend to wait until the last possible moment to seek help.  When I was pregnant with Janey, and taking the supposedly safe for pregnancy blood pressure medication Aldomet, it took a week of even increasing severe signs of allergy and reaction for me to finally realize I needed medical attention.  By the time I did, I had a high fever, a very low white blood cell count and a liver that was showing signs of severe distress.  That reaction, at 12 weeks into my pregnancy, is one of the prime candidates in my mind for what might have caused Janey's autism.

With Janey's increasing agitation and aggression to others and herself, I feel like I again waited too long to realize how bad the problem was becoming.  In fact, I'd probably have waited forever, had the school not pretty much insisted I take her to the hospital.  By the time we did, two weeks ago, it was highly apparent to almost everyone that there was a serious problem.

Why am I like this?  Part of it is a fear of crying wolf, of saying there's a problem beyond what there really is.  Part of it is a feeling that our children are our own responsibility, that we need to care for them on our own, without help beyond school.  And part of it is denial.  If you don't want there to be a problem, you don't seek help for it.

But now, we have looked down and seen we are in a tough position.  I don't know how long Janey will be at the Bradley hospital.  I got another of the letters today, the ones I am supposed to not worry about, saying she was approved to stay two more days, until the 27th, which is of course two days in the past.  We miss her so much, but we also see they have barely had a chance yet to really get to know her.  They have eliminated two of her medications, which hopefully will help, but nothing new has been added, and we don't know any new techniques to handle her.  When she comes home, I have no real reason to think she won't still be hurting herself and others.  And what do I do then?  I'm certainly not taking her back to Children's Hospital to start another round of waiting for a placement.  I think that would hurt her, and us, more than anything.  She could not take another period of time shut in one small room.

I am scared.  Not scared of Janey, although I don't like to have my hair pulled and my eyes gouged at and my hands bitten, but I can handle that if I need to.  I am scared FOR Janey.  I am scared of what the future holds.  Will it be an endless round of cycles of calm times and then horrible times like the past month?  Will her school still be able to handle her?  Will we?  What will become of us all?  that is what I wake up in fear of.

I said, before this all happened, in a post the day before she went to the hospital, that I wasn't sure there was any help out there.  Now, I see that there are places like Bradley, places besides home and school that can delight in Janey while dealing with her difficult behavior.  However, her time there is very limited, even if she is able to stay the few more weeks I hope for.  

I don't know what is going to happen next.  I don't even know how I'm going to pay all the bills from this current go-round (although this GoFundMe site has made that much less of a worry---have a look here if you are interested)  I want to think Janey will come home my same wonderful girl but with changed behavior, and it will be changed for good, and we all will live happily ever after.  But I don't think so.  One clue to this is how often we have been asked "Is this her first hospitalization?"  I guess there usually isn't just one.

If this whole experience teaches me anything at all, it's going to be to seek out and accept help a little more readily.  Even if it seems like help isn't available, I can see that might be at times because I am extremely resistant to ever saying "I can't do this any more".  I still am.  It makes me cry to think of our family not being able to care for Janey on our own.  I hope we can.  And even if we can't, I'm not sure we have a choice.  I think sometimes I need to stop looking down, to just keep on walking on the air.

2 comments:

Angela Conrad said...

I read your blog all the time. I always want to leave you comments but I almost never do. Thanks for sharing your story on your blog about life with Janey. You have been in my thoughts so much lately. My heart breaks for you and what you have been going through with Janey. I read your last comment on my blog and I am glad you don't mind I have your blog on my blog. I should have asked you before I did it. Hope you all have a good week

Angel The Alien said...

I think its important to ask for help when you need it. Parents with typically developing kids can get help from other family members, babysitters, after school programs, etc. With kids with more complicated needs, it is more complicated to get help, but you still need and deserve it!