Not much to say, even though there is lots going on. In college full time. Kids doing well, keeping me busy. Matt is working the night shift since mid-summer. Took some getting used to, but now I'm in a good routine. I work after the kids are asleep, do homework, exams, whatever. Then try to get to bed at a decent hour. Exhausted most of the time. Try to do something on the weekends when Matt is off, but we mostly just hang around the house. Not as much fishing as last year. We've gone maybe 5 times all summer. Kind of depressing. But every time we went, the fish weren't biting anyway. Global warming?
Matthew is 7 and Emily is going on 5. He's in 2nd grade, she's in Head Start and Preschool. I thought I'd be able to keep the house clean with them in school, but they seem to destroy it every moment they are awake. Maybe when they graduate high school???
Well, we lost power at 7:00 p.m. on Tuesday, January 27th. Decided to tough it out at the house for the night. Had atleast an inch of ice on the ground, maybe more. Went to bed, bundled up. Got up at 2:30 with Matthew, and saw that snow was adding to the ice. Got the kids and brought them to bed with us, 4 of us bundled beneath 10 blankets, cozy, and snug.
Then morning came. No Tv for the kids, no video games, no radio, no internet. The kids were baffled as to what to do with their time. So they whined, and griped, and begged for electricity. Matthew was sure we were holding out on him. I assured him that the electric utility workers were doing their best, but the ice was breaking and trees were falling, and that was making their job very difficult. So we stayed at Mom and Dads for the night Wednesday. Crashed out on our Queen sized mattress (lying sideways, the four of us). Thursday night, Matt opted for the couch, saying that the mattress was painful...I thought that the kids kicking from both sides was hard on me, but obviously the mattress was a bigger bully in Matt's eyes.
So for three days we went to town, trying to occupy ourselves. No water at home, so no showers. No electric, so no Tv, internet, or games to make the time pass. Cooking on propane grills, and finding that Cream of Wheat scorches easily, and chili gets boring after a few meals. So we grabbed McDonalds (after they opened). Went to town for gas for Dad's generator, which was helping keep the fridge running.
One bright spot was Friday. I woke to again make calls to Ozark Border Electric to beg for some electricity. Decided to check the IRS to see if Mom's w-2's were off backorder. Then checked our refund status. Heard that our refund was scheduled to be deposited that day. Called the bank and found out that it was there, and available! So I wrangled with Matt to go to Cape in Dad's truck, and go to Sam's Club. Discussed our refund budget again. Took Emily with us, and Mom offered to keep Matthew.
So we went to Cape. Ate at Cracker Barrel, went to the IRS office for Mom's W-2's (which also came in the mail while we were gone), then went to Best Buy, and Matt bought me a new Laptop for my birthday/Valentines present. Grabbed a TiVo, after MUCH debate about the $90 for a cable card!!! Went to Hancock Fabrics and saw how high priced they were, even on sale. Went in Big Lots and saw that they didn't have any deals on bunk beds for the kids. Drove to Sam's Club and got Mom's stuff on her list, and a few other things. Went to the shop and saw that the electric was back on. Went to Lowe's and got two VERY over priced plugs for dad's generator, and the one Jean was picking up for us on Saturday. Went to Wal-Mart and picked up some things for the computer, and house. Then headed to Jeans to drop off the money for the generator. Then ran to Mom and Dad's to grab water jugs, and gas jugs to fill up for the generator, and drinking. Ran to Floyd and Juanita's for water (their electric was on Wednesday, and offered us water). Went to get gas. FINALLY got back to Mom and Dad's and got settled in by 11 p.m. Emily was cranky, Matthew was whiny, and we were exhausted.
Saturday, Jean brought over our generator. We started it, took it home, heated the house. Went to town to get water from the Coliseum. Went to Danny's, Office Depot, and then Wal-Mart to get bunk beds. Then raced back to get the W-2's to the post office, only to find that Dad had already made that trip. Dad helped Matt wire the the generator to the fuse box to give us lights at the house. We put the bunk bed together. and started talking about going to Mom and Dad's for the night because the generator wouldn't power the furnace. Matt decided that going from Tuesday to Saturday without a shower was all he could take. He had me call my sister to see if he could go shower at her house. In the middle of the call, Mom called. I told Sarah bye, and found out from Mom that their lights had come on. Sure enough, our pole light was on. So Dad came up, unhooked the generator from the fusebox, and sure enough, we had power, heat, water, and within a few minutes, we found that our cable and internet were up and running! Talk about a happy bunch!!! (Except Matthew, who had fallen asleep while we were putting the bunk bed together).
So I went to Moms to gather our blankets, pillows, toys, and clothes. Matt, waited on our hot water heater to get up to speed so he could shower.
I should note, that this was also Matt's birthday. I'd gotten him a GPS that day for his birthday, a big splurge ordinarily, but hey, it's refund time, and it only comes once a year! And, we saved so much money by not moving to town. So I wanted to treat him. Especially, after he got me the Laptop I wanted!!
So Matt went to Danny's, and came home in the middle of the night to tell me that he'd "wrecked" the truck. He'd gotten stuck and Danny had pulled him out, and he'd slid into a tree with his rear bumper.
I told him that he got a generator, electricity, a GPS, and character on his truck for his birthday, how many people can say all of that?
So today, we got Mattresses for the bunk beds. Put sheets on them. We're sitting watching Tv, and playing on the internet. Lots of wasted brain cells. Gotta make up for days of cold, boring, quiet.
So the only draw back is no school tomorrow. So the kids will have been out of school for 5 days. We were out of electric for 96 hours. I have to buy all new groceries, since our fridge was without electric for so long. So I'll be working on that this week. I STILL have to finish Mom and Dad's basement, and catch up on college, since I had no computer for nearly a week. With kids under foot, and snow on our driveway still, I'll be lucky to get anything done. But I'll be doing it with electricity!@!!!!!!
Ok, today, I can be excited. Tomorrow I can sit in Jury Duty and focus on that. But THURSDAY, I register for classes for the first time in 14 years!!! I am so excited, and nervous. I've waited for years as a mother to get to the point that I can be sure my kids will be ok while I do this. Now that Emily is in Preschool, and Matthew is doing so well, I can take a deep breath, and jump.
For Spring, I'm choosing an online class. For both sanity, and financial reasons. In the summer, I'll try maybe two, and juggle two kids at home at the same time! Is there an emoticon for 'mom pulling hair out?' Then in the Fall, when Pell Grants kick in, I'm jumping in with both feet. One day at a time. Watching the kids, missing nothing, but adding more to my life. Happy sigh of contentment.
So much going on! Just finished with moving. Waiting for cable and internet hookup from city. Getting settled in a new place is both exhausting, and refreshing. Things are going well. Matthew settled in to January 2009 a new house, and a new routine, kinda like the old routine. Emily isn't phased a bit, as long as she goes to preschool everyday, and Matthew doesn't take her toys. She's a trooper, and a laugh minute.
Matt now getting settled into the house, sleeping in. Less noise, less neighbors....more space. Better for all of us.
And me, accepting new challenges. Facing myself in my hometown. Being me, the only way I know how.
I have adventures I cannot speak of. 1. A 'job' requiring secrecy and low pay. More of a hobby than anything. An experiment in being busy, professional, working. A toe in the water so to speak. Nothing much, but atleast something to focus on until we find a house.
The 2nd, An online persona that wields sarcasm like a sword. It's the anti-mommy in me, mixed with the ultimate 'behave yourself' finger-shaking. Indignant replies, tongue lashings. Ahhh.....my youth. School bus rides, and sassing the guys, keeping them in line. Fun days. Oh, those bus rides home were full of drama, laughter, and poking fun. Youth. Now in online forms, cryptic, secretive, cowardly. Browsing for information, freely offering opinions. So many people like this. Everyone has a style, a method, a 'signature' to their writing. Some nice, some flirty, some rude, some ignorant. Everyone in disguise. Not willing to take names and give up being anonymous. All harmless, innocent fun. Sassy people giving opinions on life, theirs, others, whatever.
The 3rd....more 'speakable' less secretive. My attempt to bring support to families with autism. Getting women to network in our area. Building a group to lean on. Giving hope to those of us who thing they are alone. They are not. Small steps. Finding our way around this life, together.
Hmm...so tired.
House hunting. Looking for something in the same school district, within price range. Before our tax refund is gone.
Matt looking for a different job. Closer to home, so Matthew doesn't have to switch schools again. Something local, with better pay. Letting the business fall to dad....and hoping for the best.
Me, looking at college. Online courses. Forward moving. Slowly.
Emily, belonging at school. Imagination. Friends. Stories to tell.... things she learns. Songs she sings. Papers she brings home. So big.
Matthew. Not begging to stay home from school every day. Getting good reports. Fewer days of pulling tickets. Stepping off the bus, smiling, not crying. Most days. Hungry all the time, growing, getting bigger, stronger, harder to drag anywhere. More willing to listen on a calm day.
Thursday, November 27, 2008
On a drive to Sikeston to take Matt to work. Having Mom and Dad all to herself for the day. Matthew actually told us he missed us (and asked if we had a good vacation, LOL).
Oh, my thoughts exactly!! If we could just get his ear, and whisper our hopes and fears..... show him Autism in the eyes of our children. Show him how our lives mingle with hopelessness. How they are fueled by hope, and advocacy, and love of our children. How each day, we wake up, not knowing if we will ever 'get off that waiting list for services' or if our child will let us dress them without kicking and hitting us. How we never know if the school day will bring a bus ticket, or detention, or a phone call. How we struggle with our roles as therapist, parent, friend, advocate, secretary, paper-filler-outer, manager, wife, mother, sister, daughter, and friend to other grown-ups. Trying to balance it all. Just like every other mother, but to the Nth power, unable to be lazy, or pause for a breath. We can only stay vigilant, and hope beyond our daily struggle. Believing that MAYBE, just maybe, tomorrow will be better. That there will be less meltdowns, more eye contact, less sensory aversion, more smiles, less food restriction, more hugs. Oh, these simple hopes.....so important to us! So taken for granted by other moms. These little things, so easy for a 'typical' child. SO fragile for a child on the Autism Spectrum.
So, in my whisper, I'd add...."Please, Mr President-Elect.....do not forget our children. Do not ignore their plight. We can't escape their disability, so please, help us to live successfully with it. Help our children to achieve every ounce of potential they have. We will fight for them, if you will just give us the chance."
Ok Christie...very informative...despite sitting beside you in Mr Crafts Algebra II class all of those mornings........didn't know a lot of that!
Ok, 6 things about me..random.....hmm....
1. I am a great shot with both a handgun, and a rifle...but don't know diddly about the lingo, or how to make one work for the first time unless coached through it. (The second time though, watch out ruffians........) I LOVE shooting at targets, as I am amazed each time I realize that if a gang of burglars broke in that I'd pulverize them (if I didn't freak out and choke....and assuming we can ever afford a handgun of my own, that won't be a danger to the kids.....oh the mommy anxiety....a talent that isn't good for the kids......Matthew near a gun.....no way..........)
2. I am overly attached to the past. I have memories of people and events, and get mushy over them. Things like, walking home everyday from the bus stop, honeysuckle in the air, and morning glories on the ground. Chuck Moore having a love of Cows, especially Holsteins, Billy and Chuck singing 'Rawhide', Christie and Janice singing "You've lost that Lovin Feelin," Ryan telling us that he wouldn't divulge his IQ score because "It would scare you." Playing Pole Tag with the guys at recess for most of 5th and 6th grade. Travis Lambert, kissing my forehead at Camp Allen when I was 12 (oh what a crush I had on that 17 yr old boy!). The weekend I met Paul, Michael, Heath and Keith, and the nearly 10 years of friendship that followed before we all grew up. Sarah Yvonne trying to teach me the Electric Slide (I SO suck at it, and always will!!) Long distance letter writing with Josh. My first Cardinals game with Jeremy. Deb asking me to be her maid of honor. My first kiss. My first date with David when he didn't realize it was a date (dufus ;) ). The Bradley girls and all their drama. Sharing a locker with Jamie and Brandy my senior year, and Brandy being SOO in love with Adam (they now have 3 kids and have been married for 11 years!). Meeting Matt for the first time and telling him to go to hell when he asked me out on a date. Becoming his friend, not knowing we'd be married with two kids in just a blink of an eye. My kids being little....and then suddenly, not.........Ok, I could spend the whole day on things like this.........
3. I've never been to the ocean, I want to , but don't want to swim in it. I'm afraid of drowning, and jellyfish.
4. My ex-husband still gives me nightmares.
5. I would LOVE to have a house to paint anyway I want....and would probably drive my kids and husband nuts with it.
6. I'm beginning to think I might have more options in my life than I used to believe. I just don't know how to decide on the best one for my family.
Ok, so there's 6 random things about me. If you're reading this, consider yourself tagged, and forward it back to me...... laramymontgomery@hotmail.com No excuses people!!
Well, I think I'm done for awhile. I think the site looks really good for now. I still have some work to do on the 'about us' page, with pictures of the shop from beginning to now, but otherwise, a success.
Dad is happy, Matt says he'd do it differently if it were his business (but doesn't know how), and Mom seems to not have anything negative to say right now (about the site anyway). Hope it helps business come in faster.
As for me, it's 4:50 a.m. and I'm wide awake, and will probably think of something to tweak in a few minutes......as is my nature......
Home -- Powder Coating Plus website progress...........
Ok, so somehow, after Dad having a vision of a Powder Coating business, Matt got wrangled as Manager...and I am the errand runner, website builder, messenger, etc etc etc...
I know nothing about website building. Charter has a program, and I'm negotiating with it, and it is often slow, cranky, and just overall temperamental. But I do it, because I like the challenge, I have ideas, and no one else has time to do it. No pay, no back pats, maybe even not worth a back pat. I know there are other sites that rock. I don't yet know if I can make this site as awesome as I want it to be. Or if Dad's idea of awesome is even remotely close to mine. We've butted heads all my life, speaking different languages to each other, often fraught with misunderstandings, aggravation. Now, I'm an unpaid employee, more or less, and he has expectations, and I often feel I fall short. He isn't much on praise, and often only thinks to say what needs to be changed or fixed. Part of his upbringing and mine I suppose, not exactly schooled in compliments he is. (Be proud Yoda is....).
So I sit, waiting for pictures to load.....5 mins for 4 pictures. I haven't even gotten to the part of editing, polishing, and being happy at what I'm doing. Right now it is all mushy labor, waiting, being frustrated, slow, slow, ugh.
So now, I will check on the last batch of pictures I was uploading, and see if this blog is equal to the time it took to upload the little suckers.
Ok, so I decided right before we moved back to Poplar Bluff, that if there were no support groups for families with Autism, that I'd grow one myself. ME, the queen of social awkwardness. What in the world do I know about schmoozing with other mommies???? What Was I Thinking? So I put it off. After all, I could never do it like Lora in Columbia, and let me say, them are some big shoes to fill!
But November 2007 to October 2008, I've sat on my hands, and done zip about it.
And yesterday there was a local Autism conference. Dexter has a group. Cape and Jackson have a group. Even BLOOMFIELD has a group! But nothing in Poplar Bluff. So I wrote my info down, and gave it to Matt Stoelb. GULP. "Here Matt, put this in your SEMO directory for parents. Include it in your seminars when people ask about local supports....." What was I thinking?
Well, I was thinking I'm a mom who is really neurotic. Psycho-organized---or is that supposedly organized or so-called organized? What is that when someone is organized or neurotic, but also completely a mess??? I'm a closet perfectionist. I hate change. Like control, routine, hmmm kinda like my kid I guess. I don't like surprises, just in case someone forgets something important. Like a surprise trip out of town, or such. I mean, I'm the one who is 'prepared' and carries too much in a diaper bag, packs too much in a duffel bag for a weekend trip.
So maybe someone who is under the impression that she can take notes, make directories, pass out brochures to medical professionals, telling of our group.....maybe that person can sit at a restaraunt once a month, e-mail Mommies and be available. That's just it I guess, being available. Coordinating. Scheduling. Taking notes. Helping point families in a direction of hope, support, and give them a sense of community. Just like I found in Columbia, with the Mothers of Children with Autism group. I hope I'm up for the task, and I don't let anyone down.
Talk about an excercise in dealing with the past. This first chapter is enough to totally tick off my parents, and start dragging up a whole bag of issues. But it's all for a purpose...to dig up how I got here with Matt, Matthew, and Emily, and see what I've done right, what I've done wrong, and how in the world God was able to make me a decent mother to Matthew. I'll be the first to admit, I'm not perfect, and will never be. If nothing else, my pride and self-righteousness get me everytime. Maybe if I recount all my crappy mistakes, I'll realize I'm not the be all end all in life, and chill out. I'm wound too tight, I get grumpy too easily. I've lost a lot of my sense of humor. I'm impatient more. I'm tired more. I'm fragile less. I don't allow myself to be emotionally trusting and vulnerable. I let life kick me when I was down, and I didn't get back up quickly enough. I wallowed a little too long. And some of the icky mud stained me.........so I've got some work to do before I get to the 'happily ever after.' Who doesn't?
So I'm at the San Francisco Bread Co. in Poplar Bluff, and just a little over an hour ago, I dropped off my baby girl at her first day of preschool. No tears today, from any of us. We were out the door early, Emily dressed quickly, backpack on, all smiles. My big little girl. A quick stop at the peach tree for a couple pictures of the two of them. Taking turns not looking at the camera. Smiles, tag, buckle in, on our way.... easy peasy.
Let Matthew out at the cafeteria, I saw Paul White as I was driving off, I think he opened the door for Matthew, not knowing who Matthew was. I'll have to check if I see him soon.
Emily ready to run at the gate, I said, "Bye Emily! See you after school!" She turns as she runs, "Bye Mom!" No hugs, no hesitation, no tears.
So what to do for the next 2 hours? I run an errand or two, and then head to the land of crazy frappa whosits, and high priced sandwiches (which I will NOT be buying....$6 for a sandwich!). I squeaked out $1.60 for a medium soda, and head to the computers provided, despite the laptop I brought. I've been here an hour now and I'm BORED out of my skull! There's only so much random surfing I can do! I've checked the MSNBC news, applied for a scholarship, calculated my value as a stay at home mom (42,000 a year without any additional services, 172,000 with), looked up the entertainment gossip, and watched as people come and go in here. So, now I guess I'll move on to the next adventure. Maybe the library? I've got another hour to kill, before pickup time. Oh, this is gonna be a long school year!
Read this a couple times, and look at the examples. I think that for a student (as in the first example of 30, 40, 80, 80) the significant improvement should be rewarded. To round the 30 and 40 up to 50, makes those 80's really count. It still averages to a D, but atleast the student has a chance of pulling out of the F range. As a former Pre-Calc student who just didn't get the material the first time, I know how devastating a low score test (or two) can be to the over all average grade for the Quarter. Getting a 34% on a test that I studied daily for was just upsetting, and it was hard to understand how my work was so fruitless. Luckily, I did extra credit work, and got a D- that quarter. But I chose to RE-take that class the next year for no credit, just to try and salvage my pride, and FINALLY learn that crap! Same quarter the next year, I got an A- on the same material, it didn't count towards my GPA, but it made a huge difference in my self esteem. I think that Calculus is a great example of the purgatory effect that a child can be in. Either ya get it or ya don't, and working hard just doesn't always fix the problem. So trying to help the kids keep feeling that their work is worth something, it wouldn't be so bad to make an F be a 50 at minimum, so getting that D- wouldn't be Sooooo hard. It's still a D-, but it ain't no F!!!!
Matthew lasted about an hour at his party before beginning to ask when we could go home. He was surprised when he arrived, a little introverted, but he managed to make it around, play some pool, and talk to few people before asking for cake and presents!
The volcano cake was a hit, and almost a week later, we're still eating it! Matthew was just thrilled to see the tornado cupcakes, and volcano cake. I don't think he ate any, but loved the looks of them!
Now that the Birthday chaos is over, I can begin the countdown to the first day of school......August 13th for Matthew, and Aug 27th for Emily (pre-K). So much running to do when they start, since Emily can't ride a bus, I'm taking them both to school and then picking her up at 11. So lotsa gas guzzlin in our future with all that drivin M-F.
Finally gas down to $3.77.....how sick is it to be happy about THAT price???? I'd love to see $2.50 per gallon again, and even that is pathetic! I remember on Sept 11th, I was working at Krogers, and gas was $0.89 a gallon when I came to work that day. Now over 4 times that much per gallon.
So, I'm caught in the crosshairs. Reading a story about a 13 yr old with Asperger's who wandered 20 MILES away from home!!!! And watching my baby boy as he creeps towards his 6th birthday next week.
We've always known that Matthew had potential to be a runner, explorer, wanderer. Of course, this could happen to us before he turns 13, but just thinking about all of the possible problems we could have as he gets older.....puberty anyone????? Sometimes it is daunting. Like the idea of meltdowns when he's bigger than I am. Or with testosterone fueling his emotions. We have so much work ahead of us. The day to day life is hit and miss. Often, it is peaks and valleys of good and bad....like anyone else I suppose. Yet, there are some days when it is like Matthew is possessed by Autism, and he can't be himself. Like no amount of therapy, tools, or soothing, will dig him out of his symptoms. Nothing can free him.
Then there are other days....when he just shines through.... sweet, endearing, full of sparkle and charm..... with ideas, and conversation....... and surprising ways of seeing the world around him. He can be cuddly and affectionate, considerate, polite, calm, and patient. Ah, such bliss for those fleeting moments in this chaos!!!! I'm not sure if it would be better to not have these moments or not. Because not having them is sometimes crushing. To know they are there, and we can't have them. To know that they are out of reach for him, and he suffers the bad days.....out of control, unhappy, miserable in each endeavor.....so hard to go through with him.
His new thing is to say that he wants a new family. Or a new mom, sister, or dad.....whomever he is mad at in the moment. Talk about a slap in the face. A 'normal' child would be set straight in no uncertain terms. But Matthew? Much harder to navigate. So I've come to the harsh response that this is NOT an option for him. We only get one family, and that's it. Period. No elaborating on how his comments make me feel betrayed for my years of loyal service, or how maybe all of us get a little peeved at him and his crap too. He's not the only human being with wants, and wishes, and limits in this house. That being super mommy is HARD, and I'm NOT perfect, but dang it, I expect some respect for surviving this long by his side!!! I'm NOT great at juggling it all, but I'm trying! So to push me aside for an imaginary 'perfect Mommy' is just a suggestion that lights a fire in me, and gets me quite worked up. I don't want to cry, and boo hoo, 'Oh my baby doesn't love me, blah, blah, blah...' NO my reaction is more of an indignant variety. How dare he? As if I wouldn't like a vacation from the stress that this family can create? He isn't the only one who doesn't like how life is sometimes, and these people around me aren't the best at making life easy! But by golly, we're in this TOGETHER, because NO ONE else would put up with our crap, because they don't LOVE us!! So, just take some deep breaths, and get over it, because you're stuck with me! Kiss, Kiss, Hug, Hug, now go to sleep, and I'll see you in the morning, love you, good night.......
And then we start the next day as if it never was spoken, those hurtful words " I want a new family." He is forgiving that way......as long as there's a glass of strawberry milk available after he wakes up, and Emily isn't in his business before he's ready.
So for summer, we just muddle through, with a makeshift schedule, no therapist in sight.... pushing ahead full steam some days, and just laying back on others. If he feels content, I usually leave him to what makes him feel calm. But if he seems to be agitated, or bored, I have a therapy box waiting, with a list of stuff to try. I sneak in some 'silent therapy' when I can...so he doesn' t know that he's getting anything done. But keeping his sensory diet available, to keep him balanced.
And Emily.....has gotten used to his presence all day, every day. At first, she missed our daily post-nap snuggle on the couch, and was very whiny, and clingy. Now that we have more of a routine, and things to do, she has navigated his presence fairly well. Soon, she'll begin preschool, and learn new routines, and hopefully make new friends. She could stand some social skills training herself, since Matthew isn't always the best example of how to get what she wants in life. She should do really well. She's already used to going to class at church, and being with other kids her age, and having a curriculum of sorts. So preschool for 3 hrs a day shouldn't be a big issue. For her, changing her nap to afternoon will be the challenge. Right now, she can be a bear if she isn't down for a nap by 10:30, so when school starts, we'll have to roll that back to atleast after noon, since I'll be driving to get her, and she'll need lunch first. But I'm still excited for her. Matthew got to start preschool in Columbia at 3 because of his 'issues.' She is a January baby, so she'll start school late, and with no obvious 'needs' she'd never clear the bar in Columbia for preschool. Here, she just went through the screening, and they managed to have a slot for her. Elizabeth (Sarah's girl) was ahead of her on birthday, and score, and got in too, so they must have had enough slots.
I have NO idea what I'll do with 3 hrs of time each morning. It kinda stinks because I have to drive to town for the kids each morning at 8:15, and then go back to get her by 11 a.m., then drive to the bus stop to get Matthew at 3:30. So not exactly a day off. And the gas prices....ugh.
So that will change our budget.
But here I am, with two school aged kids....how did that happen? I thought diapers would never end, then POOF, they're potty trained, and going to school!!!
I'm nervous about Matthew's party next week too. So much to do. Want him to be surprised, but not freaked out. I've already counted 30 people who will be coming and going throughout the day. I hope he enjoys it. I want him to have fun, and be around our family and friends. He's not used to that, but we want him to not be a hermit forever. I'm not sure he cares either way. He just wants to live his live without our agenda. But we hope that he will be thrilled when he sees what is at the party......and that he isn't upset that the party isn't happening on his birthday........
Fingers crossed....lots to do...better get with it!
Please take the time to watch this video "Missing Pieces" by Mark Leland, about autism. So touching. Great song, I hope that they mainstream it to country music television!
Matt..WAAAY up river from me (see under the lure?)
Matt putting out the campfire, while I'm laid up in the truck with a twisted knee, and a cut toe.
Ok, so after surviving the daily grind with our kids, life, money, moving, in-laws, parents, etc, we figured that 7 yrs of marriage was a reason to get away. Just Me and Matt. Luckily, the 8th is my sisters anniversary, so with ours being the 5th, we agreed on a swap the kid-sitting for our anniversary weekends, so both of us could celebrate.
So what to do with a WHOLE weekend on our hands?? Go Camping! Something we have yet to attempt with the kiddos.
So Matt decides that his old stompin ground was just the thing. So we decided St Francis River, Joe Bill Bluff, CR 313 or 316 in Wayne County was where we'd try to camp out. Of course, knowing it was the holiday weekend, we knew our plans might be affected by every other redneck with fireworks and alcohol in the county. So we figured on being flexible.
We ended up at the VERY end of Joe Bill Bluff Rd.....down among gravel, sand, and definite 4 wheel drive country. Not for your average family trip. Only for those prepared to get stuck, and have no cell reception most of the time.
Great views, LOVELY river view, shallow rapids, deep holes, LOTS of great fishing!! Right off the bat, we decide fishing is first on the list of things to do. So we walk along the bank, in and out of the water casting, and checking out out lures, waiting for a good bite. Matt is a 'faster' fisherman that I am. I like staying in one place for several minutes, since I'm the one with the bag of little boxes of lures. Matt likes to cast a few times and move upstream. So it wasn't long until I was alone, with no man in sight. Not a problem....we've got all weekend to share personal space....so I keep fishing. Then, I latched into a huge fish, a fighter that had me wondering exactly what I was dealing with....I get him out and see an awesome 15- 18" smallmouth on the end of my line. I get him out of the water, off the hook, and look for Matt, and holler for the fish basket. Then the fish flips his body so hard that he jerks out of my grasp and falls into the 3 " deep water under my feet, and swims away in a swirl of sand. If I were a tantrum throwing woman, I would have let 'er rip right then. At myself, Matt, the fish, the lack of a basket, and knowing that that fish was a definite keeper, and probably supper. It took me quite a while to cool off, and feel peaceful again. In fact, I felt jinxed for the rest of the day, and it all started with that stinkin whopper of a fish........
We had a pretty good afternoon, except I kept losing lures, even got one stuck on the rock bluff across from our campsite. built a fire, roasted hot dogs, talked, planned, set up the tent, even had some of our friends from Greenville find us by accident, and stayed to visit for awhile. It was great.
So we went upstream again to fish some more. We left the campsite, fire burnt down to coals, a blue gill in our net, and waded upstream.
We come back later and find the net and blue gill GONE! So ok, how did that little thing drag off a big net? Did it swim away? Did a raccoon come and carry it off? There's no way that someone DROVE down that LOUD gravel to steal one measly net and fish!
Suddenly, Matt spots the net, 150 feet away, across the water, on the rocks across the 10 ft deep water. We juggle theories as to how in the world it got there. How we'll get it back, should we bother, and all that. Finally, I decide that I'm going to go get the net....and my lure that I had lost on the rock bluff earlier. Then I started planning it all out....Life jacket for safety. Swim Mat to get me across....easy right? NO, not even for a second.
See, I was raised to be scared of drowning. I'm not a great swimmer, at all. Heard horror stories all my life. Of a woman who drowned on Current River in front of my uncle when her canoe flipped and her life jacket got hung on a snag with her body under water, and she drowned while 20 helpless people watched. So I'm not just antsy around deep water, I'm terrified. Smart enough to know this about myself, so I just don't go in water that makes me feel nervous. This was beyond nervous. This was a panic, knowing that if I didn't go across, Matt would. That scared me more. Knowing that if something happened, and he drowned in front of me, I'd never get over it. I figured that God knew my kids needed me, and maybe that was enough to keep me safe while I faced this fear that was bigger than me. I knew that Matt would try to save me, and probably succeed, since after all, I was in a life jacket. But he was too stubborn to wear a life jacket, and I knew that I'd drown myself trying to go after him if he got into trouble. So I talked myself into this mess. Decided I wasn't going to be a chicken. Strapped on my life jacket, hopped on the swim mat and back stroked across.
The whole time, I 'm thinking about moving, don't stop, don't think about what I might run into, or what might bite or grab me (I know, crazy, irrational, believe me, I know), then, 6 ft from shore, my back hits something, and I scream bloody murder, I'm so startled. A rock cliff extends out from the shore hidden by the water. Ok, 'I'm ok' I yell to Matt, who is NO WHERE to be seen! He'd gone to the woods looking for more wood for the fire, while I'm fighting my demons! Nice. Not only that, I screamed, and he didn't come running! Extra nice.
So I get up, and start making my way across the rocks. LIKE RAZORS on the dry rocks, and slick as SNOT on the ones under water. I slipped, and 'ouched' my way to my lure, and secured it to my life vest. Ok, so far so good..... Then I realize I'm atleast another 100 ft from the net, across razor like rocks, with my bare feet complaining the whole way. But I reach the net. Woo Hoo! I look up to share my relief with Matt...who is no where to be found, oh well, I'll just focus on getting back to my swim mat........which I spot FLOATING DOWN STREAM! Great!!! I yell for Matt, who seems in no hurry to come see what's going on. I yell again, he says he's coming, but he's no where in sight. The swim mat is getting farther away, and even as Matt comes to see the problem he doesn't seem concerned. So after a debate, he hooks up his catfish skinners to his pole, and worked until he reels the mat in. Great, one less problem.....except..that's my ride, so now I'm a whole nother color of freaked. I mean, seriously, alcohol, Xanax, dramamine, something to cool me down the way other people cool down when life scares the crap out of them. I've never been a person to use chemical means to hide from reality...I mean EVER. And life can be a little abrasive at times. But, in hindsight, I'm thinking that a little help might have been nice, since I was having a panic attack and my loving husband seemed to be totally unconcerned for my welfare, "you've got a life jacket on!" he keeps reminding me...as if that is enough to soothe my fears. Yep, being half numb might have made it less terrifying, and easier to just jump in, and oh, I don't know......break a leg....for real....??? Atleast then Matt might have realized that his wife was willing to do the unthinkable to prove that a life jacket on me was better than him swimming alone.
So finally, I make my way to the beginning of my path, where I'd left the traitorous swim mat on the rocks. I slip and jar my knee, twist my ankle, and cut my toe on a rock, ripping two toe nails down to the quick. I'm fed up with this side of the river, and starting to feel a little moody about it all. I'm ready for this crap to be over. I finally talk Matt into standing in the water to show me where it is safe to stand up. "Its COLD!" He announces, like that's the danger to me. He stands..shin deep....right in front of the 10 ft drop off, waiting for me. So finally, I ease out to the edge of the ledge of rocks under the water, where it begins the dark nothingness beneath me. I lie down and kick and swim until I hear Matt over my head. Then stand up and get the crap out of the water. Ok, I could have gone white water rafting, or sky diving, but those things wouldn't scare me like swimming across a trench in a life jacket. What a way to celebrate 7 yrs of wedded adventure with Matt...another adrenaline filled adventure, right in the safety of our own back yard in South East Missouri. The next time I want to scream, get scared, get wet, and twist a few ankles, I'll just stay home with the kids. Atleast there, I can prop my feet up on the couch between adrenaline rushes. And Matt and I can drink Yoo Hoo and push pause on the DVR when the kids interrupt.
Oh, P.S. Matt didn't even flinch when I was ready to go home a day early and sleep in our own bed. He helped pack up camp without so much a grumble, or whine that we'd just gotten camp all set up. He took me to the wanna be Dairy Queen in Greenville for a Quarter pound burger, and a cruise around town to see who was out for the celebration for the 4th. Then we came home, crashed out in our own bed, in a quiet house with the kids still at my sisters. We slept in until 9 a.m. the next morning.....something I NEVER get to do these days. It was great. Not uneventful, but a great way to celebrate the completion of 7 years of marriage together.
However....Here's to hoping that the next 7 yrs will be a little more mellow................................. :)
Ok, I think the Supreme Court is wrong, period. To say that only murderers deserve a penalty of death is just disgusting. If a child under 12 is raped, the abuser has essentially stolen their lives, and left them to walk around in their misery. Atleast murder victims aren't reliving the trauma for eternity. Raping a child is murder on so many levels. Sometimes a child might overcome it with help, and time, but they aren't equipped to deal with such horror. It would be some consolation, In my OPINION, that the b*****d was put 6 feet under. Just my opinion. Plus, why should we support their worthless butts in prison and feed them for life? Think of all the foreign oil we could buy with the money we save on the imprisonment of child rapists.......perhaps if it were put to the government THAT way, they'd suddenly believe that child rapists weren't worth the waste of oxygen........we gotta speak their language people!! $$$$$$$$$$$$$$$$$
I trust that God will sort it all out, but the mother in me doesn't have the patience to wait for 30 yrs to life for them to meet their judgement. There are enough of these wicked people that they should fuel the flames of hell for an eternity. Some small comfort I suppose.
I had a friend when I was a teen who went through this with her step dad. Her family didn't force this guy out, didn't call the police. They just prayed for him (which isn't all bad, but......). Now, over 15 yrs later, I see his name in the paper, arrested for child molestation of a child under the age of 10. So perhaps this might show why this lights a mob torch for me. It is just too close to home. And worse, the guy was out on bond before the paper hit the stands.
1. That he might become a holy man, a man of prayer, mature in the Lord, growing in his knowledge of the Lord. 1 Thessalonians 5:23, Colossians 4:12, Ephesians1:18-19, 3:16-19, 6:18
2. That he might grow in all 11 descriptions of a man who will not be shaken as listed in Psalms 15.
3. That he might be a man of contentment as seen in Proverbs 15:16, Phil 4:11, 1Timothy 6:6-8, Hebrews 13:5.
4. That he might learn to take every thought captive, to not be conformed to the world's thinking and to think scripturally. Romans 12:2, 2 Corinthians 10:5
5. That he might daily seek God with all his heart, walking in the Spirit momentby moment, growing in his dependence on Him. Psalms 119:1-2, Proverbs 3:5-6
6. That he would forever be captivated by my love. Proverbs 5:18-19
7. That he would be a man of courage. Deuteronomy 31:6, 2 Chronicles 19:11
8. That the Lord might give him wisdom to lead his family physically, emotionally, mentally and spiritually. Ephesians 1:17-19
9. May he always look at the plank in his own eye before seeing other's sawdust. Matthew 7:3
10. That he might become a called man, not driven, with well thought through and prayed through goals in life. 1 Corinthians 9:24-27
11. That he might be a man of prayer, guarding his heart and mind, putting into practice what he has heard, seen and learned. Phil 4:4-9
12. That he might stand firm against the schemes of the devil and resist Satan in all circumstances. Ephesians 6:10-18, James 4:7
13. That he might grow in spiritual maturity by putting away childish things,cultivating, understanding, striving after the Christ ideal, partaking of the deeper truths of the gospel, and overcoming temptation. 1 Corinthians 13:11,14:20, Ephesians 4:13, Hebrews 5:14, 1 John 2:14
14. That he might make me holy, cleansing me by the washing with water through the word. Ephesians 5:26
15. That he would learn to not depend on his circumstances for happiness but on God alone. Hebrews 3:17-19
16. That he would be a man who enters into spiritual warfare. Ephesians 6:11-12,1 Thessalonians 5:8
17. That he might have new strength in the midst of his busy schedule and that the Lord might infuse him with His strength. Isaiah 40:31, Ephesians 3:14-19
18. That he might have a burden to see lost people come to know Jesus Christ as Lord and Savior. Matthew 28:19-20
19. That he would be kept from strange women and evil men and that his friends would be men and women who walk with God. Proverbs 13:20
20. That his self image might be a reflection of the Lords thoughts toward him. Ephesians 1:17-19, Romans 12:3, Psalms 139
21. That he might be a man responsible for family spiritual growth. Proverbs4:1-14
22. That he might not be deceived into unbelief, sin or bitterness. Matthew13:8-10
23 That he might learn to love as God has commanded. 1 Corinthians 13:4-7,Romans 12:8-10, Ephesians 5:25
24. That the fruit of the Spirit might be exhibited more and more in his life. Galatians 5:22-23, John 15:8
25. That he might grow in humility and being a shepherd. 1 Peter 5:2-6
26. That he might grow daily in character. 2 Peter 1:5-8
27. That he might keep a clear conscience 1 Peter 3:16-18
28. That the Lord might protect him, guarding his course. Proverbs 2:8
29. That he might learn to manage his time well. Ephesians 5:15
30. That the Lord would put a song in his heart. Psalms 33:3, 40:3, Job 35:10
31. That he may have a holy fear of God. Psalms 34:11, 111:10, Proverbs 9:10
Lieutenant Governor Peter Kinder will be at a bill signing in Springfield this afternoon. Kinder will sign Senate Bill 768, which establishes a commission on autism. The commission, which will be made up of representatives from state agencies and autism organizations, people with autism, and parents of children with autism will offer guidance to lawmakers. The law also establishes the office of autism, which will fall under the Department of Mental Health's Division of Mental Retardation and Developmental Disabilities. The bill signing takes place at Burrell Behavioral Health Center on East Bradford Parkway at 1:00p.m. this afternoon."
Problems paying for meds, NO insurance? Check out these programs for Rx assistance. Never heard of them, but with NO medical insurance for us grown-ups, it's worth a look.
OOPS!!! I think that more people need wake up calls like this-----I'm talkin to YOU Matt!!! Thank goodness my mom was paranoid and taught us to check our locks every night!!! I'm fanatical about it. Period.
Especially since Matthew is an escape artist. It is an absolute necessity to make sure he can't sneak out for a moonlight walk or playing in the yard in the middle of the night......or God forbid, go fishing at the lake alone!!! Ok, now I've scared myself........
EXACTLY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Life 24/7 AND we have to treat our kids when we don't have degrees in autism treatment? Just because they are our kids doesn't mean we're born with an innate knowledge of autism treatment. Or the money to do it all anyway. HELP!!!!!! We're only human!! Read what Lisa Jo Rudy has to say about it all.............................
Should Autism Parents Have to Become Therapists? What's Your Opinion? Parents of children with physical illnesses rely on medical doctors (the experts) to diagnose, prescribe and treat their children. Parents of children with mental illnesses, for the most part, rely on psychiatrists, psychologists, neurologists and similarly credentialed professionals to sort out their children's physical and psychological needs and treat them. Parents of children with autism may not diagnose their children. But once that diagnosis is complete, it's up to parents to research the treatment options and select those they personally feel are most appropriate. Once they've made the selection, it's not unusual for parents to actually administer the treatments.
As it happens, I chose to use Floortime therapy with my son. Like many parents, I read the books... attended the conferences... watched the videos... and did my own thing. I worked with my child for hours a day, twenty minutes at a time, entirely on my own. I saw results - and so I kept at it. Had I chosen to, I could have hired a consultant (at $150/hour, NOT covered by any insurance I'm aware of). After trying one or two such sessions, though, we as a family decided to go it alone.
Recently, I've been in conversation with an RDI therapist who explained that RDI consultants really don't work with children at all - but instead train and work with parents so that the parents can work effectively with their children. Like Floortime, RDI is not covered by any insurance; and, like therapists trained in every one of the behavioral and developmental interventions available, RDI consultants charge thousands of dollars a year. Of course, parents can get involved with RDI (or SonRise, or ABA, or...) as I did: read the books, watch the videos, attend the conferences, and do your best. I must say that, at the time (when my son was smaller) I really did feel good about my work with Floortime, and had no qualms about taking on the role of therapist. And at that time, while I would have liked a consultant to help me along, I simply didn't have the cash - nor, perhaps, the intense desire - required.
Now, though, I find I'm indignant about the ways in which autism therapy is provided. WHY should parents be expected to become therapists? WHY do therapists charge such a fortune (and it's very rare to find a therapist with a sliding scale)? WHY are doctors so unwilling to suggest specific directions and provide parents with resources and names of recommended therapists?
Many of you are doing just what I did: you're acting as therapists to your children. How do you feel about your role? Is it reasonable and acceptable to you - or do you feel that it was the only choice available given the cost of hiring an outside consultant or therapist? Share your thoughts! Friday June 20, 2008 comments (1) Email to a Friend
For those of us who have MO Health, it's hard to not be a little bitter when they won't even cover treatments that the DOCTORS and PARENTS decide are necessary. They seem to think age is a qualification for treatment. "Let 'em suffer until they are 6, then we'll treat them." Don't get me started......................
First of all, a blanket shouldn't be used as a straight jacket. Basically, in my opinion, that is what this sounds like. The teacher used it as punishment, wrapping the child 4 times around his little body. That is NOT therapy. That is abuse. The child died. Because she wrapped him and abandoned him in a corner for a half hour. If I had to guess from what I know of Matthew, I figure that the child probably fought with all of the survival instinct he had, with a meltdown, trying to free himself. Placing himself in a coma before it was overwith. Dying from the extreme panic he became a victim to.
A weighted blanket is a great tool for kids who want it, need it, and can tolerate it. It is a great method of proprioceptive input, and comfort for kids who require this type of therapy. Is is meant to be an aide, NOT a punishment tool. It is meant to comfort and help the child, not restrain them. It is like snuggling, curling up with some cocoa under a blanket. Meant to produce a sense of calm, a feeling of safety, and content. Not terror. This person had no business using this therapy tool in this manner. It was irresponsible, and criminal.
This site has local gas prices, as spotted by registered users. For those of us who get out each day, it can be a 'game' to collect the prices, and log them in each chance we get, and give us a resource to save a few pennies! There's also a place where you can log your fill up info and it will keep tabs on your MPG and $$$ spent on gas for each vehicle in your family. If you want to get sticker shock!
Took Emily to her Well Child Check at Dr Preuschoff's office on June 11th. Mentioned her eye looking a little crossed. It wasn't a major concern, afterall, she'd had it when she was a baby, and it had seemed to resolve. Just that lately, we'd noticed something was 'off' with her eye alignment.
So Claudia checked, and said 'asymmetrical corneal reflex' and 'pediatric opthamologist referral.' SO, I got her in to a regular optometrist the 13th, and found that she has a need for a prescription in both eyes, but not enough for glasses at this age, but the Optometrist (Dr Dolly Campbell...who happens to have a second grade bound son who has autism--small world---) said to definitely take her to the specialist in St Louis. So Julie from Dr Preuschoff's office made the referral, got the appt for June 24th (yes, NEXT Tuesday!) in St Louis at Children's Hospital Eye Center, with a 3rd yr Dr, Dr. Lyn. So now I'm getting ready to contact MO Health for transportation reimbursement. If they'll go for that. We certainly can't afford gas for the 300+ mile round trip. Plus meals for the day. Probably pack a cooler with sandwiches, and some bottled water. That will help some. Maybe even take Mom with us. If she wants to go.
Matthew will get off the bus at Sarah's and stay there til Matt gets home for the night. Much easier to coordinate with family here. In Columbia, we'd have to have Matt take off work to deal with Matthew, but here, it's just a lot easier.
We'll see how the appt goes. Hope Emily is more cooperative than she was at Dr Campbell's office. She was there nearly 3 hrs, got the dilating/numbing eye drops, and walked around with huge pupils for 2 days. Plus, the office wasn't real 3 yr old friendly. She was bored, and disillusioned really quickly. I hear that at the St Louis office, they have it all set up for peds patients, so that should make it easier for everyone.
See how it goes.......
Logisticare in KC....provides reibursement or transport for MO Health, but because it is over 100 miles we were denied. SO need a letter of medical necessity, why over 100 miles, and on letterhead from referring Dr, and what her medical condition is. THEN wait 1-2 days, for review, to see if it can be remedied, then fill out the reimbursement forms within 30 days.
For us, it's a no brainer. IF we can get reimbursed $.19/mile, then sure, I mean, its nearly 300 miles for petes sake! That might actually cover the gas costs (after the fact of course, but it's better than nothing!)
Logisticare 1-866-269-5927 if any of you MO Health people need to know. They will either take you there, or reimburse ya. Worth a look, with gas prices trying to scalp us all!
As the parent or caregiver of a autistic child you know so much about psychology, sociology, pharmacology, local government, school systems, insurance processes, and above all love . You are truly the ultimate advocate and best supporter of your child - and this amazing task is very challenging! Because our daughter faces so many of the same challenges with her autistic child, Zackary, as you do - we understand that you often feel alone when trying to navigate a way to provide your child with the BEST quality of life possible.
ZAC Browser has been created for three important reasons: ZAC Browser is the only place that your autistic child can safely, easily and independently surf the web and successfully interact with many, many web applications.
ZAC Browser provides a parent or caregiver forum to enable each of us to learn from experiences, to share humorous stories, to be connected with others who intimately understand our situations.
ZAC Browser provides a useful links area to guide you to important commercial websites that may enhance your child's quality of life.
It is our earnest hope that through ZAC Browser your child will experience a freedom from their autistic spectrum disorders and improvement in their daily quality of life. And that you will find the information, the communication, the interaction, and the resources you need to become empowered to create the best life possible for your entire family.
Summer is here, and Matthew is a week and a half into summer school. MO Health has opted to send me paperwork for our hearing request.
Why can't they just approve Matthew's medicine and be done with it?! I just don't understand how they can justify taking away his medicine after he's been on it for nearly a year, and saying that there's no proof that it is necessary for a kid under 6. A bunch of paper pushing redtape bureaucrats who know nothing about the 24/7/365 of autism, and the behaviors and misery that can come from disturbance in treatment. Life is hard enough with autism, without outside forces hindering Matthew's progress.
I'd LOVE to turn him loose in their offices in Jeff City for the day, (NO medicine, no strategies, nada) and watch them beg for mercy. He'd teach them why it is a moral disgrace for a child like him to have their treatment disrupted. Forget the misery that causes for the grownups around him, this is about HIS progress, HIS misery. He is the one who is suffering, we only suffer by association. We can step away, take a deep breath, he can NOT step out of his own skin (although there seems times he nearly crawls out of his skin :( ).
By the way, that picture up top? That was Matthew, before diagnosis, therapy, and treatment. Unable to deal with changes in life that came at him daily. His brain unable to cope with the problem solving required to transition from task to task. Hard enough for a 2 year old, but for a child who is untreated, who have parents who mean well, try hard, but just can't "FIX" life for him.....heartbreaking.
There aren't many pictures of Matthew like this, mid-meltdown. Pre-diagnosis, they were 'fits or tantrums.' Everyone assumed he was just a bad kid, and we were bad parents. We sometimes thought those things too, before we knew the truth. So we didn't want those pictures of him, suffering, miserable, unwound. However, there are LOADS of pictures of him asleep, peaceful, angelic. Those pictures and moments helped me survive the pre-diagnosis days when I didn't understand my sweet boy when he turned on me, screaming, and unable to cope with life.
So now, when my child is balanced most of the time, when we get to look in his eyes and see his beautiful soul and his brilliant take on life??? How could we bear to stand still and watch him be stolen away from us again? Like a thief sneaking in......no, coming in, holding us at gun point. That is more accurate. We see this happening, and can't stop it. If it were a real gun, we'd fight, so why would some Mr Redtape think that we're scared of a little paperwork? Of course, I have better things to do than fill out papers. Of course, we can't afford a trip to Jeff City (gas and lodging would be a whole weeks pay). Of course, Matthew will be turning 6 next month, and if we just bite our tongues, this will fall away, and we'll be back to normal soon, without all of this hassle. Without a fight.
But that just isn't me. It isn't the kind of Mother I am. It isn't the kind of example I want to set for Matthew. Because crap like this will probably happen again. So we may as well get some practice, and learn a few lessons. Because the next fight might need whatever lessons we learn from this fight.
Oh, if only I'd known the life I was getting when I was young, looking for my 'purpose' in life.....good grief, I would have NEVER believed that I could do these things. For myself, I probably wouldn't, but for my kids, my husband....eh, not so hard to do at all...........
This video (no sound) was from 2006, after 9 months of treatment, school, therapy, and life post-diagnosis. What a change in our boy...........sign language song about summer, ice cream, that he learned in preschool. Didn't have a camera with sound on it, but I wish I had. It was SOOO cute!
Help with autism under 1 roof Sites assist families with data, support
Emily GersemaThe Arizona RepublicJun. 8, 2008 12:00 AM
Tyler and Wendy Ellsworth, a Gilbert couple in their 30s, have spent more than 12 years in their quest to help their eldest child, Danny. When Danny was an infant, the Ellsworths weren't sure whether his behavior was typical. After all, he was their first baby. They had no other experience with children to gauge whether his screaming all night, every night and his daylong naps were normal. They noticed he didn't like to be held but thought he'd outgrow his aversion. Friends and relatives told them it was just a phase.It wasn't until Tyler's mother baby-sat for them for several days that anyone seemed alarmed by Danny's behavior.
"She met us at the door," Wendy recalled. "She handed him to us and said, 'There's something wrong with him. Fix him.' "They've been directed down the wrong path a few times as Danny's diagnosis changed over the years since birth from one thing to another. Attention-deficit hyperactive disorder was revised at some point to just attention-deficit disorder. Later, another professional said he had bipolar disorder, a form of depression. As he grew older, his social awkwardness became more pronounced. One teacher said he was just immature.
Some kids began to bully him after noticing that somehow, he wasn't like them and wasn't responding to them like all the other kids. "He looks normal, but he doesn't act like you'd expect a kid his age to act," Wendy said.
Medication side effects
Around 2005, a school counselor told the Ellsworths the bipolar diagnosis didn't fit. That's about when Danny began to suffer excruciating pain in his legs. Sometimes, he couldn't walk.Danny was taken by helicopter to St. Joseph's emergency room and nearly died. He was 10 years old.Doctors determined he had suffered severe side effects from his medications. They learned that some of the pharmaceuticals carry warnings by the Food and Drug Administration for adults only, not children, because of the health risks.
The near loss of their son prompted the Ellsworths to pull him off all medications. The counselor's concerns led them to the Melmed Center, based in Scottsdale. They got on an eight-month waiting list to have Danny tested for developmental issues. After about three days of testing in 2007, they finally learned why Danny was different. But the label surprised them.
"When you think 'autism,' you think it's the kid who sits over in a corner, who rocks and who doesn't communicate," Tyler said.
They worried. "Is he going to be able to grow up and have a family? Is he going to be a successful adult?" Wendy wondered."Autism" is a label that covers a spectrum of severity. That's partly what makes it difficult to diagnose. One child could have only a few symptoms - such as a lack of social skills- and be considered "high-functioning," or having a mild form, while another is severely affected, withdrawn and cannot communicate.
As the Ellsworths reflected on it, the diagnosis fit. Danny resists changes in routine. He makes impulsive decisions. He likes his independence and throws all of his energy into physically challenging chores such as yard work. He doesn't make eye contact when talking to people.
Their quest has lasted more than 12 years - beyond the early years that doctors consider a critical period for behavioral, medical and educational interventions.The realization was not an end to their journey, though. It was just a bend in the road. They now had to learn about the state Division of Developmental Disabilities, navigate insurance coverage for services, and pursue educational support through Higley Unified School District under the federal Individuals with Disabilities Education Improvement Act. They had to learn what services would help him and how they and their six younger children could adapt to his needs.
Although many families have endured the same struggle, the path isn't the same for all. Throughout the Ellsworths' quest for diagnosis, the family bounced from one specialist to another.In all, they believe they took Danny, now 13, to more than 10 specialists over the course of a decade."We were really lost," Wendy said.
Support and guidanceJoyce Millard Hoie leads the Arizona organization Raising Special Kids, which offers support and guidance for families with a child who has autism or other special needs. Her own son, now 21, has autism. The discovery years ago hit her hard, and she remembers all too well the confusion and grief she felt."I felt like the Earth had dropped out from under my feet," she said. "I felt alone."Specialists directed her to Raising Special Kids, which pairs families with other families who have gone through the cycle of discovery and obtaining services.
Hoie believes a key step for families after a diagnosis is coming up with a reasonable and achievable plan for the child.She learned that firsthand. She threw herself into getting the best care, trying various treatments. The costs added up. Families must weigh not only what they want, but what is feasible. They also must work closely with their child's school.
Jason Geroux, the father of a boy with autism, and his wife founded the non-profit Arizona Autism Support because they were frustrated they couldn't find a single objective source to guide them through the health-care system, disability-support agencies and laws, and find a school that would give their son Tyler, now 9, the assistance he needed to succeed in life and in the classroom.The Apache Junction couple started a Web site for their group, arizonaautismsupport .org, which lists local parents who can be reached to help families through the labyrinth. Arizona Autism Support also rates the best schools and can help transition those who are relocating to the Valley.The rate of autism diagnosis has been on the rise over the recent decades. Scientists are studying the disorder and possible triggers, but no one knows why more children have it today than years ago, what the primary source is or why it's more prevalent in boys than girls.
There is no cure, but therapies exist that can help families manage the symptoms so the children can sit in a general classroom without an aide, go to prom, hold jobs, get married - live what people consider a normal life.Geroux blames a lack of education and investment for the non-existence of a one-stop shop for services.The higher-education system hasn't kept up with the increasing number of autistic children, he said. Schools complain there's a shortage of specialists in occupational and speech therapies and special-education teachers. Colleges need to step up, Geroux said.
Improved training is needed so that all new teachers - not just those certified in special education - understand and are more accommodating of students with disabilities.Better services and sensitivity to autism are going to take a lot of education, Geroux said. "And I think it's going to take more parent involvement."
My first two posts may seem at odds with each other, but in fact they aren't. They are perfectly in sync with where life is. How do we manage to survive life in the Autism spectrum, while maintaining our marriage on all levels?
Some days it's hard, others, it's so calm and peaceful. In those rare, peaceful moments, we get reminded that we are a family that has thrived despite adversity, and bad surprises, and isolation, and being broke all the time, and having chaos inhabit our lives daily. Sometimes, we even manage a date, and sometimes those dates end with sex. Something that didn't require a date, once upon a time, before the first kid was born, before Mommy was wiped out and grumpy, and sleep deprived on a daily basis. Oh, to be young again??? Well, not exactly.
Now, there's comfort in just knowing this relationship isn't about the bumps in our road, it's about mounds of little things that just create this cement to keep us together, rather effortlessly. Something we didn't see coming. Something we got drafted into. It didn't break us. Sometimes we are extra prickly. Sometimes we aren't graceful or polite. Sometimes we can be stubborn and rude. Even neglect each other, or be insanely thoughtless towards each other. Yet we manage to still believe that the other hung the moon. That we are sexy to each other, although neither of us understand why some days. Even if we have a mood that isn't a good match for the other person's 'mood' ;) Even if one of us is REALLY not in the mood. Eventually, life slows down, and falls into place. Then we get another glimpse of those two naive people who fell in love 8 years ago in the midst of chaos. SO unaware of what was in store in the next few years. We had no clue what we were in for, yet, we planned this to the last letter. We wanted kids desperately, we knew what we didn't want, and what we THOUGHT we wanted. In some ways, we've gotten it all, just in manners we didn't plan for. Other things, we got despite saying we didn't want life to be that way.
So basically, we're hanging in there. No real reason to feel disappointed in our love, no real reason to feel like life is too hard to live like this. Most days are harder than we bargained for, but not so hard we'd chicken out of this. We were drafted, but then again, we absolutely signed up for every single second of this life we have together, chaos, romance, stubborness, moods, and craziness. And we're still alive.
OK, don't blush! For those of us who are insanely busy with kids, you know it's true! We barely have time for everything we are SUPPOSED to be doing in life. So admit it, sometimes our list of 'to-do's' has this at the bottom. Whether it is age, jobs, stress, whatever, life just isn't what it used to be, pre-kids. So life has to be adjusted somehow to accomodate life after kids, to keep grown-up time a priority, with or without dates and babysitters. Even if it is just a daily kiss good-bye in the morning, or an "I love you" at the end of each phone conversation......even if we're steamed at our hunny. Little things can mean a lot when life is crazy.
For the record, I'm STILL steamed about this happening to this boy. I e-mailed the principal and the teacher, and was NICE but firm about how I felt. Our kids have it hard enough without grown-ups scarring them for life. If someone did this to Matthew, OMG, would I be pissed!! He tries SO hard! To have efforts be pushed aside and spit upon basically........ugh, just absolutely nauseating to me.
Autism spectrum can be difficult to see
A Florida kindergarten teacher recently asked her pupils to vote on a pressing issue: whether a 5-year-old boy should be removed from the classroom. The misbehaving child, who was in the process of being tested for autism, was ousted by a 14-2 count; he spent the day in the nurse's office.
A Minnesota mom was ticketed for ignoring a restraining order and bringing her 13-year-old autistic son to church. Church officials charged that the 6-foot, 225-pound boy was "disruptive" and his "erratic" behavior threatened the safety of others.
And a Philadelphia mother of an autistic boy angrily criticized her son’s school after he was left in a classroom for the day with only his bus assistant, while the other students went on a field trip. The school was short on support staff.
"We've seen the light at the end of the tunnel," is the expression some autism communities now use to describe the growing and aging autistic population. "And it's a train."
By all accounts, autism prevalence has risen dramatically. In the 1970s the neurological disorder affected an estimated 1 in 10,000 children. In 1990, it was 1 in 500, according to the U.S. Centers for Disease Control and Prevention. Today, at least 1 in 150 children—who will one day be adults—have landed on the spectrum.
Society is woefully unprepared to handle the increased demand for special needs. But as these three cases show, affected children are looking to be part of the mainstream. Parents are insisting on it.
It's an understandable desire; we all want our children to have an equal opportunity in life. For example, Karen Race, the Minnesota mother, knows that some people might fear or misunderstand her son Adam, who cuts an imposing figure for a 13-year-old, is severely autistic and has limited verbal skills.
But she rejected the church’s suggestion that he view mass through a video feed in the church basement, saying it’s different from attending the service in person.
"There are lots of places I won't take my son if he’s a distraction, such as a school play or concert," said Race, who home schools because her small community doesn't have the necessary resources, such as specialized therapists. "But we’re talking about mass, the source and summit of Christian life. [Excluding him] ushers in all the ways that autistic individuals are hurt and left out by society."
Children with milder forms of autism, meanwhile, such as Asperger’s, can often function in a regular classroom to everyone’s benefit, as long as teachers, bus drivers, aides and support staff are trained to recognize that their brains are wired a little differently from "neurotypical" children. Higher-functioning autistic children are not mentally handicapped; in fact, they often very bright.
But it’s easy to see how a child with autism or Asperger's could frustrate a teacher with limited or no knowledge of the disorder. Problems are inevitable when autistic behavior is misinterpreted as willful disobedience, something that a child—or parent—should be able to control, which may be what happened in the case with the Florida kindergarten teacher, Wendy Portillo.
Before Portillo held the vote, she had the boy’s classmates tell him what they didn't like about his behavior, which included throwing crayons and kicking the tables while lying on the floor during class. The students complained that he ate paper, picked his nose and bit his shoelaces, according to the police report.
Portillo told police that she used negative peer pressure because she believed that if the boy heard from his classmates—rather than adults—how his actions affected them, the lesson would finally sink in.
Autistic children vary widely in terms of intelligence and behavior—which is why it’s called a spectrum. They often look like typical kids, but may have difficulty relating to others, miss social cues, have trouble forming relationships and suffer from sensory overload. The very nature of the disorder makes it hard for them to understand how others feel.
This does not excuse unruly behavior that disrupts the learning process for the rest of the class. Everyone loses when children are forced into inappropriate situations. But a little bit of familiarity with autism —or at least the knowledge that a child is being tested for it—might make a teacher think twice before using negative peer pressure to shame a 5-year-old in front of his classmates.
Grew up in PB, MO. Graduated 1994 from PBHS. Married Matt July 5th, 2001, had Matthew July 21, 2002, Emily Jan 26th, 2005. Lived in East Prairie for 9 months in 2002-2003, moved to Columbia, MO in Aug 2003, lived there until Nov 2007, then Moved BACK to PB.
Matthew diagnosed with Autism Spectrum Disorder in June 2005, at the age of almost 3 yrs old. Waded through all the medical, educational, life implications of it. Still living life, still busy, still happy, just more tired. He's doing great, and getting better all the time.
Emily came along in 2005, before the diagnosis for Matthew. She is a sassy, loving, fun little girl with a lot to give to us, and a way of fitting right in with us, like she always belonged. We feel blessed to have her on this journey with us, and Matthew. Don't know that she's always glad to be here, considering how difficult Matthew can be at times, but she still manages to come running to him for hugs at the least expected moments. They are definitely a pair.
Road Trip Arizona 2009
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Arizona. Desert.
Can you picture it? I couldn't. Until now.
My BFF writer friend, Laura Manivong, and I have trekked cross country on a
quest to conjure...
He’s still four…
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I did predict it.After his third and final birthday celebration of the year today, Richie needed to know:Richie: "Mom, am I still four?"Me: "Yes."Richie: ...
Thank God.
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Barack Obama takes the Presidency of the United States of America. Amazing.
If there is anyone out there who still doubts that America is a place where
a...
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