Wednesday, March 10, 2010

Blogstipation


Haven't blogged in over a week. All bound up. Have blogstipation. Need some cerebral fiber.

You are all still on my mind of course, dear readers, enough that I was able to pull together my thoughts enough to dick around with my header image over the past week. I like doing that from time to time.

Not sure why I went with the grayscale scheme this time. I'm sure there is a deep psychological reason for it. Um...yeah. Or, maybe I was just looking for a change.

It's fun to change it up. And also this past week I've peeked at some blogs without commenting. Other than that? Same old.


Last Friday was tough.

Why?

March 5th. The one year anniversary of the first time Bennett had his first EEG and instantaneously received the diagnosis of Infantile Spasms. Which was at that time attributed to Cortical Dysplasia, which I studied hard. Later, after many failed medications and doctor visits, he was diagnosed with a Grade II Oligoastrocytoma, in other words a Brain Tumor, and then he had surgery almost immediately.

Now he has a diagnosis of Autism, or what they refer to as PDD-NOS, which 'falls on to the Autism spectrum', so they say.


I understand VERY little about Autism. Or PDD-NOS for that matter. All I seem to have right now is even more questions that I am not trying to find answers to. Why? Why this time around am I avoiding the research? Why am I hiding? What am I hiding from? Why do I keep my head in the sand over this? Why now and not 6 months ago?

What's it really mean, this Autism thing? Why is Autism different than Mental Retardation? Why is Mental Retardation now a bad thing to say? How do I define to a person in a fast fashion what the deal is with my son when they look at him funny at the mall? With so many different KINDS of Autism, what KIND does Bennett actually have? What caused it? Was he Autistic before 1/5th or so of his brain was removed? Was he Autistic before the seizures started? Or did he become Autistic after the seizures attacked his brain hundreds of times a day for 6 months?


I have WAY too many questions swirling around the vast chasm that is my egg-shaped melon. I will say this...my wife is attacking this whole thing with an intensity I have never seem from her. Books, possible dietary changes, all kinds of things she is attempting to understand. Kudos to her.

So anyway...funk explained. Sort of.

Obviously I have to give it a lot more thought. And research. I have to face it all rather than distracting myself with photographing product or organizing shelves or doing household projects or punching up the portfolio and shit like that. I think, and this is coming to me as I write this, that maybe what I need most is a starting point. Sometimes a journey of a thousand miles begins with a single step, I get that. But in which direction do I TAKE that first step?


That's the real dilemma.

OUT...

12 comments:

  1. I researched the heck out of IS. Knew about all the different medications and alternative treatments. Now I need to get my head around ADHD. Just haven't gone there. It's exhausting. But I really want to try to figure out some natural alternative before I even think about medications. At least your wife seems to on top of things for now. You will get there when you need to be. What is most important is that he is now getting the therapy that he needs.

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  2. Thanks for the update on the diagnosis. At least that puts his behavior in A perspective. I wish I could recommend a book as a starting point, or a research information site...maybe that is the first step...the internet...or maybe it was blogging about it in the first place.

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  3. My mom keeps bugging me to try that Acai Berry juice.

    ...danielle

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  4. You've taken the first step by just asking where do I start. It's all incredibly overwhelming, and I'm here to attest to the fact that it sometimes never ends, the sheer relentless of it. But somehow, one does it. You will, too. You won't solve anything en masse but you will learn, little by little. Keep it little. Keep your ears open and when something sounds right, feels right -- go there. I can honestly say that it was when I began a search for alternatives for my daughter, alternatives and complementary therapies that my life became a tiny bit and then a whole lot better. But I'm taking up all the space with my natter and chatter. Anytime you want to kvetch or complain email me. And blessings to you and that gorgeous kid of yours --

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  5. Tough questions. One may never know when autism entered into Bennett's world. My recommendation is to only focus on that as much as you need to get the proper treatment for him. If it doesn't affect which therapies he receives, then the only thing you probably could do with that information (were it even possible to know) would be to worry about the what-ifs or likely even take more guilt on yourself.

    Wow, a year since the diagnosis. Your family has come through so much since then. Quite frankly, a bunch of it has been sucky. Cancer?! Unemployment??!! My heart hurts for all that you guys have been through, but I am encouraged and impressed by how you just keep going day after day.

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  6. Going 25 years with no explanation of why Colby is "like he is"...I certainly know how you feel...It sure would be so nice to fill in those blanks of when, how, why, etc...But,as Elaine said very wisely, the most important thing is what you are doing today....And Bennett is reaping all the benefits of your's and Jen's good decisions....It is SO hard not to question those things, though..

    I think you and your better half make a wonderful team....

    It seems like one or the other of you is "on it" all the time....What a great partnership!

    Hang in there...Sounds like you are just needing a bit of a break right now...Let Jen run with it for now...Your turn will come soon enough...

    Cyndi

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  7. It's nice to give things a name. But don't stress too much about what you "should" be doing or feeling. Bennett is, above all things, your precious little boy and you are a Bennett-expert simply by being his dad. You guys have been through SUCH a wild ride this past year. I imagine that, at the beginning, doing all that research helped you cope. And at this time you don't crave that like you did then. So let yourself meander a bit, settle in a bit to this new understanding. One foot in front of the other...that's all you must do.

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  8. Hey,

    Two weeks ago my son was diagnosed with PDD-NOS, and disruptive behavior disorder-NOS. I am really struggling with it as well. I can't wrap my mind around it all. I've been thinking about ABA therapy, possibly a school that specializes in Autism. We still have seizures to contend with as well, so who knows. I have heard some great things about some diets. A lot of people start with removing gluten and or cassien. We did that with KC and didn't have much luck, but you never know what will work for which kid. One think I do think, is that with autism, kids can learn to manage some of the symptoms. With kids who are mentally challenged (the pc term I think for mr?) there is only so much growth that can occur. At least that is my understanding of it.
    I hope things get easier for you and your family.
    Oh, and Danielle, if you read this, KC is on Acai berry juice from Monavie. It helped him sleep for a few weeks but then his body got used to it. Now I am not seeing much of a difference.

    Karen
    www.caringbridge.org/visit/kcmahoney

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  9. PDD-NOS is a sort of catch all. Its like the OHI catch all for school. Its a broad label that gets you services rather than a distinct condition with a defined set of things you can do. You are in the world of misdiagnosis and changing diagnosis now. Unfortunately you are not a stranger to that world. Interestingly enough, I read in a number of recent articles that doctors are saying that Jennie McCarthy's child had Landau Kleffner Syndrome (epilepsy) and not autism. Epilepsy is responsible for a lot of autism like symptoms and behaviors and I am quick to blame it for everything. The last year was horrible and this is the kind of anniversary that we don't get cake for. Sorry. Its a reminder of so much pain.

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  10. I think all parents of kids with challenges go through a period of time where they don't want to read about it or research it or anything and then other times (like your wife) they attack it like crazy. It comes in phases in my experience. And it's OK. It's part of the coping/grieving process. No, you probably shouldn't do it forever, but a few months is totally understandable. And your wife may get burnt out while you become energized. It's a trade-off.

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  11. For those looking for help with sleep, try melatonin (in the vitamin aisle -- try just one or two mg at first). As for other natural help with ADHD, maybe try a sensory diet? I have written a little bit about it on my blog if you are interested. Just let me know. It is 10% food and 90% other activities designed to regulate the body. Usually it's just used with kids who have sensory processing disorder, but you could modify it to fit your needs. I use both of these things and medication. My son has Fragile X Syndrome (ADHD, MR, sensory disorder, autistic behaviors).

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  12. learning about something new is always difficult to me. I usually run to the library grab a million books- lose half of them and then pay $20 in fines. But eventually I realize I can tackle the subject a little at a time and i don't have to be an expert over night. Of course this is regarding my own physical ailments- if it were my child I would suspect I would be doing exactly what your wife would do. Zach on the other hand stands still and kinda gets overwhelmed and freezes. Everyone has to find their own way.
    I think blogstipation might be airborne- because I too am suffering. Be well and deep breathing.

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