Sunday, August 10, 2008

No more waiting!



I keep waiting for something really great to talk about, or for anything that just gives me the itch to blog. It hasn't happened, so I thought it was time to get back to it.

Life has been very nose to the grindstone-ish lately. Lots of working, lots of taking care of the chillins' which absolutely hasn't been easy as of late. Leah is not in preschool at present, so her life is out of sync. She thrives on schedule and consistency. When things get upset with the order of things, so does she. In like order, we all suffer. She's unhappy, so she does a bit more than rock the boat; it's a bit more like taking down the Titanic level of operations from her. That's not a perfect Analogy, since she's not just floating around like a giant iceberg. She can be a force equally to be reckoned with, but she would move through the water more like a Katrina like Hurricane. I love Leah more than life itself; it's just that she wreaks (sp?) havoc on all of our lives when she's unhappy, struggling to communicate or get what she wants. etc.

Hannah would be nearly perfect if she would sleep a few more hours each night and not do what she can to aggravate her sister. It's understandable, seeing as how the first year to 1 1/3 of her life, Leah spent terrorizing her to the fullest extent possible by being an uncontrollable bully on her very little baby sister. In Leah's defense , having Autisim and perhaps other mood disorders, etc. it's not the easiest for her to reason out the best decisions for the welfare of others. Having said that, now that Hannah is still much smaller yet more capable to fight back, (though the fight is far from even still) Hannah does her worst to push, pull, gouge, steal, etc. etc. etc. when the opportunity presents itself. She's basically got her big sister's number on almost all her buttons to push. Revenge is bitter sweet, since Leah can still dish it back to the power of 10; being extraordinarily strong for any 4 year old. She's also very big and tall for her age.

I just spent 20 minutes trying to find some video footage that we took of Leah on our digital camera that only does 2 minutes of video at a time. I know we had two different times where she was absolutely spiraling out of control on camera, but I couldn't find it. I didn't want to put this on here at my daughter's expense later in life, (and I guess it doesn't matter anyway, since I couldn't find the footage.) but I thought it might be worth the risk. There are a few close associates of ours that only seem to see Leah when she's not in her comfort zone to let it all loose, which is usually the case when she doesn't know someone all that well. Anyway, since that seems to be the only time she sees these people, they think sometimes or act like we're jus making all of this up, or that since she doesn't do it when they're around, then the problem must just be us as parents, and not anything serious that is actually going on with Leah. I was hoping to let the camera speak for itself for our friendly and family doubters, but I guess it wasn't meant to be, at least for now.

This doesn't help for sibling relations, nor does it help when she decides it's time to throw a 11.0 size tantrum on the temper scale out in public. Leah Looks like she's almost 6 and not disabled, so when she unleashes her worst, Carrie and I end up looking like the kind of parents that need to have their kids taken into custody by the authorities and put into foster care from the prospective of the general public. It's quite understandable. I mean, why haven't we done our job as parents and taught this perfectly normal yet obviously extremely neglected child how to behave and how to act? No one can know the hours we've spent reading, researching, searching for help in a state that wants to pretend that children and adults with problems like our daughter just don't exist. If they do, and if there are people like us that can't pay enormous piles of cash out of pocket, to get Leah treatment, then it would be the state's responsibility to step in and assist. Since the status quo of the Local political philosophy is ignore and hope it will go away so we can keep taxes low, there isn't funding available from the state to fund social welfare kinds of programs. Because of this, we suffer, and therefore, Leah suffers because she's not getting the kind of treatment she diserves.

O.k. I know that there will be a few of you out there (not everyone, but I know you exist because you've talked to me and shared your views.) that would say; there's help available where you live or somewhere nearby. You just haven't looked hard enough!!!

Don't go there. I will remove your comment from the blog, and I might block your e-mail address from my inbox. It's nothing personal, but I've "...climbed every moun tain, forded every stream...searched high and low, and (we haven't) found (our) dream..."

The small silver lining is we did locate someone who is very qualified to offer in-home ABA tharapy for Leah. It's absolutely free, but it is unfourtunately, only once a week for an hour. Leah needs about 2 or 3 hours, about 3 times a week or so.

Obviously this is better than nothing, but it wasn't quite what we need just yet.

Sorry. I had no intention to go off like this. It was somewhat therapeutic. Hopefully it wasn't also a snoozer, or really annoying to read.
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I'm too tired to edit this post, and if I wait to post it until I have time to make it better, I'll likely never post it. Sorry for my sloppiness.

4 comments:

mrswade said...

Brian,

I want you to know how much I believe in both you and Carrie and your parenting abilities. I have no doubt that you've turned over every rock in the search to find help for your daughter. I don't know you well, but I know Carrie. And I know two things about her. One, she wouldn't have married you if you were a loser who gave up. Two, she doesn't give up.

You two are amazing and wonderful. I'm here for the both of you. I also wanted you to know that I'll soon be starting the book on autism that Carrie recommended. I want to understand the situation better and be a better ear for listening. Hang in there. You two are good people and good things are going to come to you. Believe.

Brian said...

Thanks Shannon. You're great! I'm really thankful that Carrie has you as a friend.

Carrie said...

Imagine what you would have written if you wrote this today, when things got so much worse. Must be those crappy parenting skills again...

Thanks for being so supportive, Shannon! You have no idea how much that means right now. We feel very alone.

mrswade said...

Hey, I'm just trying to hold on to that friend badge.

Just kidding. I'm certain that the answer is near. I don't know why I feel that, but I feel it strongly. I feel like someone/something is just around the corner and it's going to be the answer you've been waiting and praying for.