I know it’s been a really long time since I posted… I’ve had a crazy couple of weeks here.
In any case, I wanted to post something for Father’s Day, so I thought I’d share one of the first songs I ever wrote.
My earthly father’s pretty darn cool, too, here’s a couple of pics for ya:
Dad in his hippy days
<-- he's glaring at me for uploading that pic
My dad is probably the hardest working person I’ve ever met. He worked an average of 80-90 hours per week through my entire childhood (at one point he held 2 full-time jobs and a part-time all at the same time), but still tucked me into bed every night when he got home.
The few hours he had left he spent working on stuff around the house for us, and somehow still found time to complete an associates degree (and most of a bachelors) in electrical engineering from home. I remember sitting on a chair next to him at the kitchen table at night watching in awe as he built circuits and fixed things with his soldering iron.
Some of my fondest memories are of all the times my sister and I cajoled him into playing guitar for us (not that he didn’t love playing, he was just tired!). Now that I think about it, it had to be amusing for him to have his little daughter begging to hear “House of the Rising Sun”. I could have listened to him play for days on end.
He still plays for me every once in a while… now that his shoulder injury is healed and he’s cut back to halfway normal working hours I’m hoping I’ll get to hear a lot more. He played backup for me once at his church (I sang flat the whole time, it was awful lol), and we’re hoping to do more songs that way. Perhaps I can get him to let me record a video at some point…
In any case, that’s my dad, and I love him to pieces. Isn’t he great!? :)
♫♪ I’m so happy, feeling snappy, my life is rosy, I’m feeling comfy cozy…
keeps getting better, good days forever, and this is one great day… ♪♫
I had a great day today! I’ve been having a lot more of those lately.
My arm is doing so much better these days that as long as I remember my meds it hasn’t been hurting at all when it’s at rest… a very far cry from the constant screaming pain it was in for so long. I’ve been able to make blocks, hold a microphone, mow, pull weeds, and many other things, as long as I work in short spurts, take proper breaks, and splint it when I’ve overtaxed it, it continues to cooperate. My throat is still blistery, but it hasn’t been particularly inflamed or in pain, which means it’s not affecting my singing voice at all (hence the song posts of late). My legs have even been cooperating more — I’ve started using my leg braces more again, which I had neglected for a few years, and it’s letting me do a lot more.
Combine all of the physical improvements with a good church, warmer weather, and the promise of 5 whole weeks with my best friend this summer, and things just look so much brighter around here.
Today I actually got to spend the entire evening with a friend. I helped her break down her yard sale for the evening, we had dinner together, went to church, and spent way too long yacking about anything and everything … it was great! :) We kind of fell out of touch over the winter, hopefully we’ll be able to get together every few weeks or so now, though. I might even manage to drag her to a concert sometime this summer.
I got this song stuck in my head last week and went to try to find the lyrics, turns out there are various lyrics for it, and there were things I didn’t like about most of them, so I rearranged and picked and chose and wrote my own version and decided to record it.
I was playing around with some background sounds but can’t decide whether I like the drumming or not. Let me know which version you like better.
As always, all feedback is welcome, just don’t be too harsh :) Remember I’m recording on a laptop mic with free software so I can only do so much for the quality.
I wasn’t planning on posting a song this weekend. I have a lot of work to do, and really should be off doing it. But we sang a song in church last night, one we’ve sung a few times in the past, that got stuck in my head, so I figured I’d better go look up the lyrics so I could sing the whole thing and eject it (I generally have to hear a whole song through a time or two before I can get it unstuck). Anyway, I did manage to find the lyrics after some searching, and went to see if there was a recorded version on YouTube.
To my shock, the only versions I’m able to find anywhere leave out the last, and what I consider to be the most important verse of the song. Before I go futher, let me share the lyrics with you so you’ll know what I’m talking about:
When He Calls I’ll Fly Away
1. There was once a time when, in my heart, I was condemned to die; I was walking in my sinful ways. Jesus paid the ransom for my soul, I bade this world goodbye; When He calls me I will fly away.
(chorus) When He calls me, I will answer “Here am I!” — I am ready, if He wants me to die. There’s a mansion now awaiting me on high — I am going there by and by. I have made my preparation, from this world a separation; I am walking on God’s highway, when he calls I will fly away.
2. I could never think of turning back into this world of sin. I’m rejoicing in the gospel way. I am longing for the time when heaven I shall enter in — I am ready should he call today.
3. If He needs me in this harvest, helping gather in the sheaves, I will gladly labor on below. If on earth my work is finished, and it’s time for me to leave, When He calls me I’ll be glad to go.
Here’s the thing. It really bothers me that this third verse has been left out in the popular recordings. It doesn’t really surprise me, but it does bother me.
One of the biggest temptations we face as Christians (and when I say we, I definitely mean myself included, as this is absolutely my biggest problem) once we’ve gotten our own affairs more or less in order, is to just sit back and wait. This problem is huge in the church, because it’s the temptation that most affects Christians that have been around a while.
Most people aren’t that likely to sit back saying, “I’m ready to come home, Lord” or “Lord, come quickly”. Some don’t believe, and to them this entire idea is ridiculous. Some are busy reveling in their pet sins and figure they’ve got plenty of time to straighten up before the end. Some have people depending on them. Some have goals, either in their personal lives or in their ministries, that they’re trying to complete. Some just love their lives and aren’t ready to leave yet.
But those of us who truly believe, have more or less gotten our acts together, and who are tired, for one reason or another, often fall into the trap of just sitting around begging God to bring us home. I’ve wasted years of my life this way. In my case, it’s because I don’t enjoy life here at all. I’m in pain, all the time, and I’m almost always tired. Further, I have no children dependent on me sticking around, and at least right now, no clear ministry. The promise of a place with no more disease or pain, where I get to spend all of my time singing praises, is overwhelmingly appealing to me.
Songs that remind me of that blessed promise really speak to me, as they do to most of the older Christians I know. There are some services where every single song we sing is about going on home, and I don’t usually pick the songs, so I know this feeling resonates with others.
Here’s the thing, though. We have a JOB to be doing. I wasn’t intending for this post to get this long, so I won’t go into all of the scriptures, but they’re abundant. We’re not supposed to be sitting around waiting to go home, we’re supposed to be out in the world sharing the good news, making disciples, and making a difference in the world.
This is a great song, when you read it all the way to the end, but without the last verse it’s just another temptation. It’s just another great melody distracting us from what we’re really supposed to be doing. There’s no harm in looking forward to the life to come, but we need to do so acknowledging that, for whatever His reasons, God hasn’t come back and He hasn’t called us home yet.
I have a policy that I won’t let myself sing a song unless I can agree fully with it’s lyrics. This one’s a tough one for me, but I’m singing the song, so I am endeavoring to live up to it. If He needs me in this harvest, I will gladly labor here. I just hope He gives me a better picture of what I’m supposed to be doing soon.
Oh, and I recorded the song, just so it’ll be out there somewhere in full. It’s not the best recording, it’s a capella, and I was probably singing too low, but here it is :P
Today I was thinking about this study, which came out the other day.
I read it a couple of days ago and didn’t think too much of it. It pretty much agrees with what a lot of us have been saying all along, that there isn’t really an “autism epidemic” – it’s just that a lot more people are being diagnosed, as autism is more clearly defined, the ‘spectrum is widened, and the symptoms are more widely recognized. There are plenty of autistic adults around, in all areas of the spectrum. Some of the ‘lower functioning’ adults were diagnosed as children, many of them were misdiagnosed with other developmental disorders, but a lot of them were never diagnosed at all, and have just had to make it through life as best they can, challenges and all.
This brings me to what I was thinking about today. I’ve heard a lot of parents say things that have been very hurtful to autistic adults. Things like “you don’t speak for my child” or “you’re high functioning, you don’t know what it’s like for my child”, etc, etc. Parents write blog posts about how their kids can’t do this, that or the other, and can’t be expected to, because they have autism, and how dare the world not conform to their needs? They get absolutely livid with their parents, or their grandparents, or aunt June, when they say things like “well, in my day, you ate what you were given” and “we didn’t put up with that kind of behavior”.
Parents say “these people just don’t understand” and “they have no idea what it’s like to raise a child with autism”.
But you know what?! Maybe they do. There’s ample evidence that there’s a genetic component to autism, and that grandma, the one who raised the father of your son (or perhaps the aunt who raised cousin Billy, or that old neighbor lady with the quirky son)? She might have had to deal with a lot of the same things you’re dealing with.
But in her day? There weren’t rules in place forcing schools and insurance companies to provide early intervention therapies, she couldn’t just send him off to professionals to teach him how to eat new things, or ride a bike, or hold a conversation, or speak clearly, or stop banging his head. She couldn’t afford to take him to McDonalds to get his favorite meal every day, if he didn’t want to eat the food that came out of her garden. She knew the schools wouldn’t think twice about spanking him for ‘acting up’, so she had to find ways to help him learn all of the necessary skills on her own.
And your hypothetical husband (or cousin, or neighbor)? His autism is still there. He’s still got quirky habits, shies away from social situations and annoys the crap out of you with his eating rituals and his fixation on certain subjects, but he he functions, more or less, in society.
Perhaps grandma, or aunt Ruby, or that annoying old neighbor of yours does know something of what she’s talking about. Autism isn’t some newfangled thing, and you’re not the first generation of parents that have had to learn how to raise autistic children. The past generations raised these children so well they didn’t even have a name for it, and at least on the higher ends of the spectrum they didn’t even consider it a disorder. Some children were just more difficult to raise than others. Perhaps there’s something to learn from them after all.
Most of you know that I consider myself autistic (very high functioning), you can draw whatever conclusion you want about that. In most areas, I wouldn’t advise anyone to take advice from my parents about parenting, as I’ve been through a lot more than I would ever wish on anyone. And I do believe that my life would have been much easier if I had known about autism 20 years ago. Knowing would have eased my mind about who I was and what was wrong with me, and it would have given me a better idea of what types of help I needed to get.
But I wonder, if I had been born in this generation, diagnosed at an early age, put through battery after battery of different therapies… if I my quirks had been excused because of my diagnosis, or I had been stopped from ‘stimming’ every time I went to swing for hours or played the same song over and over and over… if I had spent years in therapy trying to learn to display empathy and look people in the eyes before I was ready… if I had been put in a separate classroom to work on my ‘social skills’ instead of starting kindergarten early (because I already knew everything they taught in preschool) or if I had been kept from starting college early because of fears about my emotional maturity… would I be the same person today? Most assuredly not. And on most of these points, I really don’t think I would have been better off for it.
I know most parents want the absolute best for their children. This is the reason they push for as many early intervention therapies as they can. They spend thousands upon thousands of dollars on treatments (which often aren’t affective), just to try to help their children beat the odds that say that autistic adults are so much less likely to ‘make it’ in the world. (And don’t even get me started on ‘alternative therapies’.)
At the same time, many of these parents shun the advice of autistic adults and those who raised them. The amount of disdain they hold towards a given individual seems inversely proportional to how ‘autistic’ that adult seems… is the madness not evident here?! The ones they want their children to most end up like are the ones they’re least likely to consult.
The next time you snarl and roll your eyes at the advice of an elder, or an autistic adult, perhaps you should check yourself and see what they actually have to say. And maybe, just maybe, you could better use some of that time, energy and money you spend fighting schools and insurance companies to research what past generations did and work with your child more.
Of course, not every Aunt Betty or grandma knows what they’re talking about when they make snide comments, but perhaps some of them do. And some of the therapies we use today are definitely better than what they did back then. I’m not saying therapies and interventions are bad (though some types most certainly are), but I do think perhaps this generation has lost something by shunning the past, thinking autism is a new phenomenon and the book has to be rewritten for raising these kids.
The 5th of the month has come again, and I’m actually on time posting this for once! If you don’t know what the $5 on 5 thing is all about hop over here for an explanation. Last month I explained why I felt the need to take the $5 on 5 thing in a new direction (and if you have any suggestions, please share)… While I haven’t really solidified my plans for the long haul, I felt the need to continue these posts in the meantime.
This month, rather than ask you to give $5 to a specific charity, or your local food bank, or whatnot, I’m going to challenge you to give $5, $1, $20, or whatever you can afford, to someone you see in need this month.
This may be a friend who’s having a rough time making ends meet, a struggling mother in the grocery store who looks like she’s could use a pick-me-up, or a stranger on a street corner (take your cue from Lost & Tired’s boys).
Decide now what you think you can give, and make an effort to find a person (or several people) you can bless over the course of the month. If you feel so inclined, come back and let me know you participated :)
If you know me at all you should be aware that I totally love nursery rhymes and fairy tales and the like, and I’ve most recently been plugging my friend Fred’s ebook of fairy tales (see that Neverwas book cover over there? –>) along with some of his other stories. You should totally go buy the book.
Anyway, it seems that Fred decided to take Goodread’s request that you “tell a story of how you met” literally, and he wrote this cute little fairy tale for me. How totally sweet is that?! It’s a fun read, and I hope you enjoy it…
This is a little tale that I wrote as an allegory of the way Tam and I met. Viewed one way I guess it could seem cheesy or patronizing, but the real details are private and this is close enough to get the gist across. Since Tam has expressed a real fondness for my alternate fairy stories and fables I thought I’d use that as the basis. I like the way it turned out but welcome comments here and on my own site at http://wwwGrenvile.com.
Fred Grenvile
Once upon a time a Big Bad Wolf met a little girl wearing a dark green stocking cap. The wolf greeted the little girl politely and she told him that she was called “Little Green Stocking Cap” because she was never seen without it, for an evil fae had cursed her to never remove it. She was called thus for so long that soon everyone had forgotten she’d had any other name, even she! Little Green Stocking Cap was wandering the woods on her way to find a house she’d heard was made of sweets. She had left her own home because her poor parents could not help her to remove the heavy green cap, and for shame they made her wear a silly bonnet to cover it when ever she went out of the house. Green was quite courteous to the wolf, which was quite a novelty for him indeed. But when they had spoken for a time, Little Green Stocking Cap remembered that wolves had an unfair reputation for eating little girls right up. She became frightened and ran away very fast.
Now the wolf had just remembered that the house of sweets had a very bad reputation, indeed. So, valiantly, he attempted to warn the little girl that what was sweet to the taste could turn sour on the stomach. But Green ran very fast and he became winded, so with a snarl he turned and went on about his wolfly pursuits.
Green Stocking Cap did not trust his quick retreat and continued as fast as her little legs could carry her. Just when she thought she could not run another step, there in the next clearing she saw the great house made of sweets. The walls were chocolate cake and the windows were sugar candy. Each tile of the roof was made of a different kind of chocolate delight. With a cry of joy, Green Stocking Cap ran and flung herself on the sweet-tart steps of the house and fell fast asleep.
Just as it fell dark a beautiful princess appeared and opened the door to the sweet house and invited Green Stocking Cap in. Green was very tired and the princess was so beautiful that she trusted her instantly and was soon fast asleep in a bed of her very own, with sheets of spun sugar and pillows stuffed with kettle-corn.
For a time all was lovely in the fine, sweet house, then one day Green took a fancy to hold a celebration to thank the beautiful princess for her hospitality. Green waited until she was out then slipped into the the princess’ chamber to seek correspondence that might reveal what friends might visit to celebrate.
On a high chest Green found a writing box that held many letters and notes. As she was copying the most promising names, the princess returned and found her with her hand in the box. Before little Green could explain, the princess transformed and her true form was revealed to be none other than the same wicked hag that had cursed Green to always wear the cap!
Green gave a cry and ran from the house, just avoiding the clawed hand of the wicked fae. In her other hand was a great knife and Green had no doubt that should she be caught she’d soon be cut up and in the pot to boil!
Again, Green ran as fast as her little legs could carry her, but the cap snagged upon bushes and held her back, so that the fae gained upon her, calling all her wicked friends to aid her in catching the little girl. The fae truly did plan to feast that night!
Just as Green’s legs gave out and she fell to the soft mould beneath a great oak, the Wolf sprang out of the brush. Green’s heart quailed, for she knew she could not run another step. With the Wolf before her and the Hag behind, where could she turn. She was dinner for certain.
Just then the Wolf leapt and Green fell to the ground shivering, but he sailed right past and took a great bite from the Hag who had come up behind Green unawares. They fought and tussled in great fashion, but eventually the Hag was so bloodied she tore herself free and fled with a screech, grabbing a broken stick and flying off on her makeshift broom.
The Wolf led Green to an old shepherd’s hut by a glassy lake. It was none to clean, but Green soon found she had made a home and in time the local animals and herdsmen became a new family. And ever after the Wolf watched over her from the deep wood.
I got “called on the carpet” at church tonight. Last Friday it seemed to me there were too many people up on stage trying to pick out worship songs, and not enough people in the pews praying, so I decided this week I’d hang back and pray instead.
Over the course of the week I apparently forgot the why and just remembered I wanted to hang back. I got there a few minutes late anyway, and just slipped into a back pew and made myself as comfortable as possible. I got a few looks from people that were obviously trying to figure out what I was doing sitting down there in stead of going up on stage, but I just smiled and nodded at them and stayed put.
After a couple more songs the pastor looked back, noticed that I was taking a drink out of my water bottle and said, “I see Tammy’s back there drinking on the job”. Doh! I managed to keep from spewing my water everywhere… My first reaction was to muse at how clever he had been, then I got just a little offended. When I thought about it a bit more, though, I realized he had been exactly right, probably without intending to be.
I remembered then that my intention had been to sit in the back and cover the service in prayer instead of singing… and instead I was doing neither. So while everyone wondered why I didn’t take the cue to come up on stage, after such obvious prodding, I sat back and started praying fervently…
After a while someone all but ordered me up there, so I did go up and sing a song or two, then settled back to praying. The resulting service was much better, I think, jesting aside, so I think I’ll make a regular habit of staying back to pray. I suppose I should talk to the pastor about it before the next service, though :P
I’ve had to handle a lot of changes over the years. I’ve resigned myself to staying home nearly all the time. I’ve adapted to spending years without a vacation, even though I used to live for road trips. I changed majors in college and have made 2 major career changes due to progressions in my disability.
Over the years I was forced to give up on baseball, then basketball, then bike riding, then wheelchair basketball, and I’ve all but given up on adapted kayaking as the nerve damage has slowly taken more away from me. So far I can still swim if I have the right equipment, and I pretend I’m getting exercise when I ride my lawn mower.
My house is a mess. I gave up long ago on trying to keep it straight, because I just don’t have the energy. Recently I’ve had to adapt to living in a space that isn’t just cluttered and dusty, but is also dirtier than I’d like… I can barely handle sweeping the floor or cleaning the bathrooms anymore, so it just doesn’t get done very often.
I seem to be okay with the big changes. It’s not easy, and sometimes it takes a while to overcome the upset, but with God’s grace I eventually manage, I find a way to get by. I find something else I can still do, or I find a work-around, or I find a way to live without whatever it is. I’m not sure my solutions are always healthy, and often it takes a lot of counseling from a good friend and a lot of prayer to come out the other side, but I’ve managed so far.
What really gets to me are the little things.
My keyboard isn’t working right? My world will not be right until I can fix or replace it. The internet goes down? It doesn’t matter that I was planning to be away from the computer all day, my day is shot. I got up planning to wear a certain outfit only to find it’s in the laundry? It may take me an hour to find something else I’m okay with.
The little things are crippling.
If there are dishes overflowing my kitchen sink I cannot start any other work until they’re done — and if I don’t have the energy to do those dishes? I won’t get anything done that day at all.
If I’ve lost something, I cannot move on with my life until I find it. I’ve had a certain drill bit missing for weeks now and I cannot seem to make myself do any of my toy work, despite the fact that the work I most need to do does not require that bit. I need to find it. It’s driving me mad.
The problem is that life is full of little problems and upsets. I drop half of the things I touch, but one little mess can throw me off for the rest of the day. I lose things all.the.time! Things come up at the last minute, I get sick, it rains on the day I wanted to mow, a customer emails and I don’t know how to answer their question, paperwork needs sent somewhere, a friend has to cancel something… all little things that can throw me for a complete loop.
Perhaps this is normal, but other people seem to be able to ‘not sweat the small stuff’… perhaps I just expend so much of my mental energy adapting to major issues, that every small thing is a proverbial straw… but it sure would be nice if little things didn’t get to me so much.
I’m sorry for the scarce blog posts. I had been doing well with regularly posting there for a while but my keyboard’s space key went and crapped out, and it’s really hard to type much when you have to paste in a space between every single word. (Not to mention all the times I accidentally hold the control key down too long after doing so and end up typing other control key combinations and losing everything or shutting programs down).
I’m pretty computer savvy, so when my laptop’s space bar stopped functioning I took it apart, cleaned it, reset the nipple, and put it back together, but apparently the lead itself is bad, so I’m out of luck. I spend enough time online that I go through keyboards pretty quickly, but this one isn’t even old enough to have any of the letters worn off, so it must have just been badly made.
Since my desktop computer’s chair is currently holding a printer that’s too heavy for me to move, I’ve switched now to a weird setup that has me using my desktop’s wireless keyboard while I’m sitting here looking at my laptop screen, which shows me what’s happening on said desktop – unfortunately the wireless kb’s keys are not as ‘springy’ and light to touch as my laptop’s.
Most of the time, when my upper arm isn’t acting up, I can manage to type fairly well and quickly, despite the peripheral neuropathy that has shredded the nerves in my hands. I do depend on the springs in a keyboard, though. I can tap down without tiring my nerves too much, but if I have to pick my fingers back up they tire incredibly quickly. So I make sure every keyboard I buy has very very springy keys, with as light a touch as possible. This one, though, is one I got in trade from a friend — I had no money to spare on another at the time — and I don’t use it often enough to have bothered picking up a new one later.
I wish at times like these that I had a good speech recognition program, but I find it nearly impossible to properly articulate when I’m tired, and both my strange habit of unintentionally and randomly switching accents and my inability to regulate the volume of my voice (I honestly can never tell when I’m yelling or being too quiet) makes it nearly impossible for me to manage to use voice rec anyway.
So all this rambling was basically just to say that I hope my new laptop keyboard gets here quickly so my life can get back to normal. I’m hoping for tomorrow…
