Wednesday, October 2, 2013

Forced Shutdown of the Very Needed Kind.

My laptop battery dies, taking with it the sounds and activities that have been consuming me since the school bus pulled away from the house. I had, probably, three or four tasks running and around nine tabs open in Firefox.

Ignoring my Sony Vaio's warning messages -

10% battery life remaining 

7% battery life remaining 

I thought if I could just hurry and get this one thing done, then I'd get the cord.



I happen to be sitting on my bed, so I close the lid and lay my head back, closing my eyes. I hear things: a bird chirping right outside my bedroom window. The ceiling fan directly below in the family room whirring rhythmically. A lawn mower in the distance. One of the dogs chewing on a bone in the room somewhere. I've never been so grateful for an electronic failure. My own forced shutdown.

The realization that this minimal sensory input is so inherently more fulfilling ironically hits me like a bomb.

Gut check.

I ignore that critical low battery warning in my own self every day that comes in many forms - some blatant, some more subtle.

I have a lot to do today here at home, errands to run, and not nearly enough time to do it all before I have to be at work this afternoon. There is never enough time in the day or enough energy in this mama. Some people work part-time; some people work full-time; some work over-time. Moms work all-time.

And moms with special needs kids work *&#$+h*&^%-time (symbols indicating a word that doesn't exist in our language).

During my son's (with Asperger's) therapy session yesterday, the therapist turned from him, looked me dead in the eye and said, "Do you know you have ADHD?" 

Ya think?
Yeah, I know. And I pay dearly for it - the least of which is the $150 medication that I take to help me function. I tried going off of it for three months earlier this year to save money  and - let me just tell you - when the neurons and neurotransmitters in your brain don't work properly, don't stop taking the med that corrects that. It nearly wrecked me. And you probably don't want to ask my husband about it at all. I think he's blocked that time out, and we don't wanna go bringing that to the surface.

It was kind of amusing that she said that in the middle of a session about something else, but on a deeper level it was validating that someone who knows the brain and how it works (besides the doctor who diagnosed me) can spend time with me peripherally while treating my son and see it. She's either that good . . . or I'm that bad.

ADHD is such a flippant diagnosis these days that it has become like a dirty little secret for those who truly suffer from its sometimes crippling effects. It's as if hearing that come out of your mouth, whether it's about you or one of your children, suddenly undermines your credibility - as if that's your excuse for what's going on here.

Aaaaaand we're back. (See how this ADHD thing works?)

Ignoring the critical battery message isn't even all that much about balancing everything for me - it's about convincing myself to pick and choose what I need to do and what I don't. Or more honestly, prioritizing what really is important versus what I just simply have to let go.

And forced shutdowns? Yeah, that needs to happen more often for me or I'm going to be no good for anyone.


Monday, August 26, 2013

The Silent Killer

As I watched my two younger boys march out the door this morning, this mama prayed a prayer similar to others I've whispered thousands of times for them - for acceptance, for the ability to process their surroundings and emotions and react well, for simple friendship, for them to be able to connect with someone today and laugh. This is the prayer of a mother with children on the Autism Spectrum.

More precisely - children who are in the desert area of Autism - those who have overcome Autism Spectrum Disorders just enough to fall into the abyss of "out of sight/out of mind." And it is silent but deadly territory.

They do not flap their hands or bring attention to themselves in those obvious autistic ways. People do not look at them and instantly see that a deeper compassion and understanding is needed. They can even fly under the radar of teachers, who have IEPs in their hands chock full of information about the child they have in front of them.

They do not hit other children, or scream out in emotional tantrums in public anymore. They are doing "so well!" by outward, obvious standards. They function, they engage in some normal, age-appropriate activities. They. Don't. Stand. Out.

Hallelujah, right?!?

But you often don't see them or their parents at any of the local kids' sports league activities. They may have tried at some point, realizing that it was too much. You probably don't see them at extra-curricular activities because just getting through the day can be taxing enough (and can take the entire evening to even out from). All of the "on the outside I'm just one of you, but on the inside I work twice as hard to regulate what's going on" is exhausting. It literally is.

Evenings and weekends can be some of the toughest, most emotionally-draining times for these families because of this exhaustion. This is when these kids are among those who will love them no matter what. This is when they unload in order to be able to face the next day, week, month, lifetime of being on the silently deadly part of the Autism Spectrum.

The challenges these kids face are just as monumental  - and crippling - as those whose issues are outwardly obvious. We spend just as much time and money and emotional and mental energy on therapies, programs, doctors, specialists, etc., on our children as those who have much more visible physical and mental disabilities, yet we are mostly left behind.

As parents, we do everything we possibly can to help our children overcome this disability every waking moment of every day - including trying to find people outside of our family to be parts of their lives so that they feel understood and accepted by others who choose to engage with them. Because believe it or not, they are awesome human beings with hearts that are amazing.

My heart breaks thinking of the people who have at one time or another taken the time to do just that only to drop out of their lives for one reason or another. These people have no idea the devastating effects this has on an emotionally fragile person already questioning daily why God made them so different on the inside.

There is no one waiting at the church door to take kids on the "silent spectrum" under their wing so these exhausted, on-the-edge-of-tears parents can sit for an hour and listen to a sermon; because outwardly, their kids just seem like weird pains in the butt who don't want to engage with kids their own age - not emotionally charged children who have an incredibly hard time sitting down with other kids and just talking.

There is no one always ready to help you because every time they see your child they are reminded of their disability and what you must endure in everyday life.

No, we just seem like average people who can't handle the rigors of everyday parenting and working and life. Because as parents of these children who are silently suffering, we are silently suffering as well. And the isolation is crushing.

Why, you wonder, don't we be more vocal? Ask for more help? Make our situations known?

Well, have you ever been around that "Hey, what about me?!" person? The look-at-me, look-at-me person? The one who always seems to have something wrong to ask for prayers about, needs help resolving, can't handle ... Exactly. That's why.

And on some delusional level, we just wish the people who "know" us best really did know us. But at best, we are stressed-out working parents with kids who always seem to have some kind of crappy issue going on that needs dealing with - and who wants to be part of that? I don't even want to be a part of that. Friends have been lost along the way because even though you've tried to explain how difficult the life is, when you drop off the face of the earth when things become too overwhelming - no one comes looking for you.

So we silently suffer among ourselves and the people we pay our last dime in savings to in the hope that they can try and help us. And yes, I mean us. Because if one or more people in your family is on the Autism Spectrum, you are all on the spectrum. It attacks and attaches itself to every fiber of your family and every member suffers from its effects. And it is a roller coaster ride that you know you'll never get off of, but wish it would break down so you can just have five minutes of peace before it starts up again. 

There needs to be more awareness for this part of the Autism Spectrum in addition to Autism in general. We've gotten the public to somewhat understand what these parents are going through with their screaming, non-verbal kids (which one of mine started out as), now how about a movement to understand there is a whole group of people on this largely unrecognized area of the Spectrum where many kids wind up suffering alone, misjudged and outcast.

It really does take a village to raise children, but the system breaks down when your family speaks a different language than everyone else in the village.

photo by sanja gjenero

Thursday, June 27, 2013

Doggone Those Breed Lists!

As you may or may not know - I manage a dog daycare. That's right - my degree in journalism has been so useful here. However, my heart is soaring.

You can imagine how many canine magazines, blogs, webzines, etc., that I read for pleasure and to keep up with the latest in the dog world. Some of what I come across is amusing, some helpful, some amazingly intriguing, and some frustratingly inaccurate.

There is one topic that comes up over and over, year after year; and - unfortunately - I'm sure some put a lot of stock into whichever version they read.

Top 20 Breeds for Families, or 10 Best Breeds of 2012, or how about What Are The Best Breeds For New Dog Owners? You get the idea. Some cite who their "experts" are on these topics, some do not. When they do, it is most often vets they have derived this information from; and why not? Who else would know more about different breeds of dogs than veterinarians?

But let's think about this for a minute. Of course vets know much more than the rest of us about dogs. Well, dogs' health, that is. But when it comes to behavior, even most vets should be able to acknowledge that they see individual dogs - even if they do see every single breed - alone. One on one. In an exam room. They do not see the dogs interact with other dogs, or their reactions to other people (other than the vet techs and their own parents). There is an entire side of dogs that many vets are not privy to. I LOVE my vet, but even she admits this.

When I read some of these "best breed for ..." lists, I almost always end up with my jaw gaping in disbelief at what some list as "great dog for families" or "good breeds for first-time dog owners" as well as their reasoning behind these declarations.

So I have an idea. How about for some of these lists and discussions on breeds where behavior is concerned, they gather their information from people who actually spend their time with 20-30 (or more!) different breeds on a daily basis - experiencing them interacting with each other, reacting to strangers, etc.

Talking to those who see many breeds of dogs interacting under many different circumstances, I assure you, would make a very different list of Good Dog Breeds for Families, or Easily Trainable Breeds. Certain underlying traits for particular breeds or breed mixes make themselves known pretty quickly in the daycare environment; and I can only assume that they do in other group dog environments as well.

These lists are fun to read, and should only be a small consideration when making an important decision like adding a pet to your family. But a little more real-world information would go a long way in making sure the right pets are matched with the right people - and that fewer dogs end up being given up or euthanized simply because the owners' expectations were not met.

And with that, I have big group of dogs to go manage!

Tuesday, June 11, 2013

Worry It Out, Work It Out, or Walk It Out

I used to be a person who would get stuck in my ways. MY ways. Then God gave me children. Then he revealed those children's places on the Autism Spectrum. And then I believe he may have sat back and snickered a little, knowing full well that he wouldn't let me go *all* the way to the point of my head exploding before revealing something even more important - that my way is not THE way.

Which led to my quickly having to learn to lean on others and their knowledge and experience of concepts I knew nothing about - and never thought I needed to. Come to think of it, it was quite an egocentric life I led way back then.

If something didn't work for me, then I'd get mad and pitch a fit. If I had a problem, I tried to solve it in my way until it worked. If it didn't, then I'd make it. Or fail.

Do you notice all the "I's, me's", and "my's" in that? And it ended with the word "fail".

Forrest Gump's mama was right, "Life is like a box of chocolates - you never know what you're gonna get." But what she left out, which Forrest ingeniously (if not supremely and affectionately naively) figured out on his own, was that you have to bite into it to find out what's inside. And then you have to manage the outcome from there the best you can.

But God knows (as do some people) that you can't avoid the things of life by bypassing the whole box of chocolates. You will encounter life, it just won't be as sweet or interesting, and you won't learn a thing or grow in the least. (Read: your life will be fantastically boring and non-contributional. I don't know if that's even a word.) By not digging in and taking a bite, you'll still be dealing with life - you just won't know what it is you're dealing with.

Managing the outcome is where I trip and fall the most. I'm quite comfortable with biting into things. It's what I do. I've always been like that. It's the conceding-to-do-things-in-ways-that-may-not-be-how-I-would-do-it thing that was always the problem.

Again, cue the part where my kids are on the Autism Spectrum.

It's not so much that I developed a plan to deal with the things of this life within my own means and limits - but more that God revealed to me that I typically take one of three paths out of a conundrum, and challenged me on whether or not that was working. Or as Dr. Phil would put it, "And how's that workin' out for ya?"

Not mutually exclusive, these three paths are to worry it out, work it out, or walk it out. Worry it out by myself - which never does anybody any good whatsoever; work it out with someone else - by just talking, getting someone else's perspective, advice, or professional help; or Walk it out with God - walk in the word, talk to God, listen, seek his guidance and wisdom.

So you see, I sometimes go in the right direction, but other times I get slightly off track (as humans often do); and there is great room for improvement (as there usually is).

I'm hoping that God thinks that two outta three ain't bad, and can see that I'm working on that worry part. 

photo by Thomas Pate

Wednesday, May 29, 2013

The Autism Spectrum Can Suck It.

This isn't going to be pretty. Or nice. Or uplifting by any means. But sometimes the realities of others need to be seen. And heard. And felt by someone else; if for no other reason than to validate that these feelings exist among people in this world - and not just by me. 

It's been rough around here and I've refrained from writing about it because I honestly get tired of being the *one* who has *something* going on. I just want to melt into the social/parenting/friend/community woodwork sometimes because it's more comfortable than, well, always being the ONE.

Today I hate Autism. I hate Asperger's Syndrome. I hate every inch of the entire Autism Spectrum and every spike that it leaves on every day of my life. Selfish? Yes. Egocentric? Perhaps. But you know what? My entire being is about making sure everyone around me is okay every. single. day.

Yes, that is basic parenting. Every parent has to do that. But for ASD parents, that is kicked up to a whole new level. Let's even call it few stories, depending on how deeply your child or children are engulfed by this elusive disease.

e·lu·sive adjective

1. eluding clear perception or complete mental grasp; hard to express or define: an elusive concept.
2. cleverly or skillfully evasive
Some days, I hate my role as an ASD parent to several sons on the spectrum. Some days, I hate parents of neurotypical kids because they represent what I will never have - not through hard work or dumb luck or strong belief or playing the lottery or being really good on Jeopardy.

And I know hate is a strong word. I know.

There are days when I hear someone complain about their kids bickering like typical siblings, or mouthing off, or pouting, or, or, or - and I want to throw a brick at them and say, "Hey! For the love of God, I'd give my right arm to only have to deal with that!" A little over-the-top reaction, you say? Well, that's how it feels. Can't imagine? Exactly.

I want to throw a fit some days about the fact that I can't seem to be able to finish any single thing I try to accomplish, or do anything very well because I am constantly pulled in a different direction for a day, a week, or longer depending on what child is now going through whatever crisis or new phase that we all must now bend in all different and strange ways to accommodate. 

On a good day, I can reason with myself about those feelings. Everyone's reality is just that - their reality. And you cannot blame someone for not having to experience what you do. It's not their fault that this is the life you've been handed.

But this is not a good day.

Most of the time I can handle this life with grace along with my very "realness" that makes me who I am. Sometimes I fall.

Today I'm in the pit and it stinks to high heaven down here - like something went and died. I think it may have been my spirit.

Tuesday, January 29, 2013

What Matters?

That's what my middle dude, who is now 14, would say when he meant "So what?" when he was a toddler.

Me: "You have toys spread out all over your room."

Middle dude: "What matters?"

I have gone through many up and down periods in my life centered around answering that question. I'll admit that I get tripped up by the concept that what some people are doing matters more because it's more visible, it's major outreach, it touches many lives. Those people are amazing for doing what they are doing.

But comparing yourself to them is a slippery, slippery slope - one that cannot be easily climbed back up once you find yourself sliding down.

In the last year, I have found myself slowly creeping down that slope. Circumstances in our life have dictated that I spend less time volunteering and doing much of what made me so happy with my church and beyond, and focus more time on situations that are not so fun but must take priority. And it stinks to high heaven.

It has made me feel unreliable and like I have abandoned many who could always count on me. I have people from all directions wanting more from me; and I have two paths to choose from.

1.) Give everyone a little, spread myself too thin and do no one any good.

2.) Give up a lot of what I do for some people and focus on others who take priority.

Both paths leave people unhappy with me, and leave me emotionally exhausted and upset that I'm letting someone down.

You'll notice that neither of these avenues has me going on mission trips, speaking out for or raising money for causes important to me, or doing anything that makes a difference in lots of lives.

So we're back to square one. What matters?

Well, I don't think there is an answer to such a trick question. Or at least a definitive one. Obviously it is different for each person, but even to each person this is an evolving concept - one that is a finicky beast.

We all have foundational things that inherently matter. For me that is God and family. Those do not change. But beyond that, it's like that carnival ride where the whole thing goes in a circle while each individual compartment with people in it also twirls. Sometimes they twirl in the same direction and sometimes in opposite directions. Add to that the differing speeds of the two, and it's no wonder you spend your time on it wondering which way you're going, when you'll get there, and was that last night's curly fries I just tasted at the back of my throat?

Trying to follow what matters in your life sometimes feels like that when the concept beyond your foundation is always evolving. Or is that the problem? Should it not always be evolving? How can it not be?

I have no idea at this point. I just know that I feel like I've spent a lot of time chasing my own tail this past year only to realize recently that I DON'T HAVE A TAIL.

So what do you think?