Tuesday, January 31, 2012
It all starts with Garrett's tummy. He has battled constipation for years now. And recently we ran out of one of his Mito cocktail supplements, Folic Acid, and the compounding pharmacy took a while to get it in, so he was off of it for about 5 days. Meanwhile, he started pooping daily.....AWESOME!!! But then he stopped. Then a day later we got the Folic Acid back into his little body and the poop came again, every night!! It was great! Then three days ago, that stopped. So I had to add more Miralax and then ExLax as well. So yesterday he was grumpy about pooping a bit here and there and made he couldn't wear big boy undies. Then while Shelby had him last night he was still very upset and not passing anything but dry bits here and there. So Shelby put him in our bed since his bed linens were still drying from the previous night where he was so constipated he dug in his diaper and bum to get it out and smeared it all over himself and his linens in his sleep. He fell right to sleep on my bed with the heated mattress pad on. Then he woke once and Shelby offered to let him take a bath and he said no and fell asleep again.
Addie, Ainslee and I had been to a 4-H community service planning meeting and when we came home Garrett was fast asleep. I got the girls to bed in Addie's room and went to check on Garrett. He was zonked. I made his bed but thought it would be good to let him sleep with me if he would. That usually doesn't work as he wakes and realizes there is someone IN THE BED to talk to and won't be quiet!!! However, last night it worked. He was so restless and rolling into a ball and rocking and rubbing his tummy in his sleep. Finally, at 2:00 this morning the flood gates opened and I thought it was over. He went back to bed. But nope, the gates opened again at 5:00, 6:00 and then three more times waiting for the bus just around 7:00.
SO there ya have it, my confession of sleeping in the bed with a young, slim, blonde.......and his STOOL!!!!!
He snuggled with me before we got up, and his little body feels so tiny and skinny but sooooo soft and sweet. He sat on my tummy this morning in the dark and took my cheeks in his little soft hands and said, "I love you Mommy," and then kissed me on the lips and then gave me an Eskimo kiss. And I melted!!!! I am in love....again!!! But with TWO men now!!!
Monday, January 30, 2012
Sunday, January 29, 2012
Saturday, January 28, 2012
And here is the real deal after Shelby helped set it up. Honestly, this is the best $8 toy I have ever seen!! Easy to assemble and comes with a flexible track/road and not one but TWO little AA battery-powered monster trucks, a bridge, a tunnel AND an alligator who opens and closes his mouth when the trucks pass a little lever. Oh, and a vermin who comes out of a tree stump when his lever is passed. And yes, I will send you one from our tiny market for $8 plus shipping if you really want one......yes, I am serious!!!
And in the final photo above, Garrett is in serious stimming mode.....that's Autism for focusing and doing strange movements or posture while doing so in Garrett's world. He is beginning to flap his hands and FEROCIOUSLY grinding his teeth as he watches the two trucks speed around the neat little track.
Friday, January 27, 2012
Thursday, January 26, 2012
Wednesday, January 25, 2012
Sunday, January 22, 2012
For the first time, I have the honor of a guest contributor on the blog! The subject of many photos and great stories to date, here is the man, the legend, my best friend, my beloved husband, Grouchy, bringing a daddy's perspective to parenting and loving our sweet Garrett. I know you will enjoy this insight, and by the way, he is an INCREDIBLE writer!!! And that's how he made me fall for him....through 6 months of letter-writing before we ever met in person. I will blog that another day when I have LOTS of time. Enjoy!!! Godspeed, CL
Garrett’s Done it Again! Or, ‘Where’s Garrett?’
‘Where’s Garrett?’ is a question we ask each other multiple times every day. It’s a combination question of who’s watching him, what valuable items are in danger, is he clean/dry, is he safe… and so on. But to others, it’s a genuine curiosity and hint of ‘I wish Garrett were with you’ when we see them without Garrett.
Garrett has a string of beautiful teenage girls who call him on 5-6 days/week. One of them gets him off the bus at noon and plays with him until 3:30 when another one intercepts him and plays with him until late evening, often times bathing him, feeding him and putting him in bed. Garrett’s 6 and he has more - and more concentrated - female attention than I’ve ever had… And everyone knows my lovely wife gives me more than I deserve, so that is not a complaint. Even though these charming young ladies are compensated for their time, their dedication is a tribute to Garrett, not the almighty dollar.
Garrett has his own horse trainer. Oh, he doesn’t have his own horse yet. But he has a horse trainer that is more interested in him than the horses I paid him to train. I met George through a mutual friend. A grandpa who is easing out of the training side of horses, but still making his living shoeing the critters, George is a reining horse champion who works with his son, Mike, training and shoeing. They’re the kind of pure authentic country neighbors we have that both talk bad about the other, but with a smile so wide you know it’s just their way of loving each other. So when I went to see how our horses were doing that he was training, I tried to pick an evening that they were riding and that I had Ainslee with me, but not Garrett and that wasn’t Gymnastics, AWANA, Dance or piano… so I ended up with Garrett and Ainslee. As we all three approached the round pen where Mike was riding one of our young ‘uns and George was assisting on the ground, I was busy directing Garrett and preparing to apologize for whatever he might unexpectedly do or wherever he might uninvitingly go. But after a couple of minutes of one eye on the horse and one eye on Garrett, George exited the round pen and left me to watch the horse being worked, assuring me that Garrett couldn’t hurt anything around his place. ‘Oh, you don’t know Garrett,’ I thought, as George disappeared, presumably to take care of some of the other mounts around his barn. Next thing I know Garrett is in the middle of the arena with a somewhat broken tricycle in tow and George closely behind. ‘I’ll get him, George,’ I holler, expecting George to be miffed at the interruption of his cold and windy evening routine. ‘You just stay with Mike,’ George hollered back. ‘I’ve got Garrett and we’re just fine.’ ‘We’re just fine,’ I thought. George – a nice guy for sure, but someone who doesn’t even admit to liking people and who has thousands more hours of saddle time than social time – following Garrett like he was his own grandson and forgetting about his chores or anything else. Now, every time I see George – or Mike for that matter – the first question they ask is, ‘Where’s Garrett?’ George stopped by yesterday to check on one of the horses he had trained who is a little lame. He did a quick hoof check, then it was back to the backyard to watch Garrett play. Come to think of it, the only time I’ve seen George laugh is when he’s talking bad about Mike, or watching Garrett.
Ken’s shop is just a couple of miles from our house. Ken knows every rancher, farmer, hunter and fisher in the valley, and on any given day, if you stop in for more than five minutes, you’re sure to meet one of them who’s also stopping in for five minutes. Now, five minutes at Ken’s shop is not five minutes on the clock. Five minutes is a figurative term used to describe the amount of time you actually lose by stopping in, but to be sure, it’s not ever less than 15 – and that’s if you’re in a hurry. It usually involves a cup of coffee if he’s open, or a cup of something better if he’s closing. Ken enjoys his shop being the gathering place to discuss the latest roundup or harvest data. But Ken’s shop is not ‘kid-friendly.’ It’s got big tables of canvas and big machines around to sew it all together, or monogram it, or cut it. But when I stop in with Garrett, Ken is more than willing to donate his flat dolly to the cause of Garrett of pushing it around his shop making train noises, or bus noises, or just noises that he thinks coincide with whatever maneuver he’s executing. And, while notably disturbed by the activities of the kids of some others who stop by and relinquish control of their little ones to the open space of Ken’s shop, Ken is very interested and even engrossed in little JG and his questions about the machines and material that lie around in seemingly random fashion. Invariably, after being offered a cup of coffee, the next question I get when I stop by without Garrett is, ‘Where’s Garrett?’
Heidi is the friend of a friend. A sincere young lady we met at a Dutch Oven cookout at someone’s house. In fact, we didn’t even know the hosts, so we tried to decline the invite based on that fact coupled with the fact that we had no sitter for the evening. After being assured we and our kids were welcome, we found our way to a nice contemporary house in a nice neighborhood. The primary gathering was around the fire in the spacious backyard. No other children were present, and, as usual, Clara-Leigh and I ended up on separate watches, with her manning the inside of the house where people only transited to refresh drinks or raid her chips and dip, and me by the fire or in the area looking out for Garrett when he came outside. Later in the evening, worn out from entertaining Garrett inside, CL made it outside to the fire with JG. And, in spite of the absence of any other children, our two girls had done their usual integration with Addie talking to one or two of the other adults, Ainslee entertaining any and all who would pay attention and Garrett… Garrett was with Heidi. Or, should I say, Heidi was Garrett. Unbeknownst to either of us, Garrett was wrapping another beautiful young lady around his little finger. We would find out later at another similar gathering of mostly the same people when Heidi asked us about Garrett and then went on to explain the connection she had with him, the amazement she had of his mind and his wonderings and his wanderings. She wants to keep Garrett. She wants us to give us an evening off, but really what she wants is an evening on. An evening where she can escape this silly world and all its convention and go with Garrett to that mystical place where he lives in wonder and amazement at the simplest things that the rest of us take for granted or think we understand or are annoyed by.
So, where’s Garrett? Well, on any given day, Garrett can go to the fair – which is our driveway and a big plastic roller coaster that Santa brought; or he can be on stage – which is our living room floor coupled with an iTouch, DSI, play guitar or any other musical instrument to which Garrett can march, gyrate, or do the chicken dance in perfect rhythm; or he can ‘go really fast’ on Dad’s tractor, which is just me and my old 1980 model IH 1086 running it for the sake of running it, but having more fun than it should be because Garrett is propped up on the ledge behind the seat screaming with excitement as go down the ‘roller coaster’ of our driveway and ‘speed’ down the road at 18 Mph to Mr. Bob’s just to turn around do it again; or he can drive his school bus - an old tricycle from his therapist office that they had to get rid of because it no longer met safety standards – with one of his lady friends in tow holding on to a rope and sitting in an easy roller designed for someone 10 years their junior smiling and laughing as they glide through Garrett’s world with him. Where’s Garrett? He’s in a beautiful, magical, mystical place without clocks or schedules or assumptions or convention and anyone who gets to join him gets a glimpse of a better place as well. Yes, my amazing wife and I can always use and appreciate an evening off – an evening to spend with each other or our two little angels who live in the same world as we. But, maybe what we need more often is an evening on – an evening without the rigors and stresses of the clock, the convention, the coldness of our ‘normal’ world.
As for me, I think I’ll go to the fair for a little while this afternoon.
Saturday, January 21, 2012
That's the beautiful man God so generously placed in my life. I just love him! He and Garrett took a spin in our new tractor. Garrett was giving me a thumbs up, and Grouchy was so happy and proud!!!
Friday, January 20, 2012
Thursday, January 19, 2012
"No, Garrett, no one thinks you are stupid." I quickly reply.
And he insists, "Yes, they think I am stupid."
"NO THEY DON'T, Garrett. No one thinks you are stupid!"
"No, Garrett, they don't."
Uuuuhhhhhhh........and I kissed him goodnight and wanted to crawl under his bed and cry and just stay by his precious side and protect him from any assault from any angle in any way. Let me face it, Dear Lord, that someday I am going to see someone make fun of him, and maybe even call him hurtful things, but gosh I have some preparing to do. I do not think anyone has said he is stupid....to his face....yet. But to hear him say these words tonight..... makes me wonder what's coming.
Many, many times in my life I can point to things that have happened to me or around me, and those things have molded me and prepared me for certain situations. Case in point, my mother has a cousin, Chip, who has been disabled since birth, but only physically at first. After surgery as an infant to repair his spine, he was left with additional disabilities, including mental disabilities. Once his parents died and his adult caregiver was unable to care for him due to her health issues and age, Chip moved from New York down to Alabama to be close to his uncle, my mom's father. Then upon my grandfather's death, my mom became his caregiver. While Chip lived in a nursing home once he moved to Alabama, my mom took him out every Wednesday evening to dinner and to the bookstore, one of his favorite places. And the years I lived at hime with my parents and then as often as I was home from college, I was blessed to tag along. Then we visited every Sunday and additional days of the week as we could. Chip was in a wheelchair. He had an enlarged head, an eye that pulled to one side, this FABULOUSLY almost white, grey hair, and a sense of humor that was worth a million!!! But he had his moments, challenges, and mental meltdowns that rival some of Garrett's! I was always so proud to push Chip's wheelchair, operate his van's wheelchair lift, help as I could. I almost dared people to stare, whisper, comment even to the person walking beside them. It was like I grew up facing the issues I fear, and had no earthly idea at that time, that it wasn't just about Chip and his care and our love for him, but it was about my future. Chip has since passed away, but wow, did he change my life in so many wonderful ways. And sometimes I sense he is right here with me, adoring me as he always did and encouraging me to do the RIGHT thing.
And that's my heart tonight. It is very heavy. Garrett will be 7 years old this summer. The behaviors that were fine when he looked like a toddler are no longer looking acceptable as he is now tall and obviously older. He does get more looks. People notice. And while most people are kind to him/us, there will be those tough times when those few cold, cruel, heartless, maybe just really hurt, people lash out or make fun of him. So while I am not ready for this chapter, the book continues to be written, and I have no power to stop it.
So maybe tonight is the warm-up for my skin to thicken. And maybe it is also a reminder I need, and welcome, that I MUST be on Garrett's team.
Wednesday, January 18, 2012
A few days ago Kimberly walked into the grocery store to get a few things while her husband waited in the car. She walked into the veggie section and noticed a boy who was behaving in a way that made her realize right away that he was probably autistic. The boy was playing with signs in the area and had just started to twirl and touch a promo sign hanging overhead and just had "that look." Kimberly noticed the mom right away with one of those "I better hurry up and get this shopping done while he is somewhat occupied" looks and also noticed the mom had another child in her shopping cart. About this time a man walks up to the boy and grabs him by the arm and begins to verbally scold him for playing with the hanging sign. The mom turns to the boy and the man and begins APOLOGIZING to the man!!! At this point, Kimberly said that the mom became me, and that getting to hear our stories through our blog, she knew she had to do something. So she acted, right then and there! But not in a way some would have with anger and negativity. She brilliantly turned it around and approached him, essentially telling him to stop, but then he started telling her about how well-behaved his children are. And then she dug her heels in. "So do your children have any issues? I mean, do they have any problems or challenges or anything like that?" WHAT?? Isn't that about the most prefectly-formed method of dealing with someone like this?!? He says his kids have no issues, but as it evolves, the other shoppers have stopped walking and shopping and are now all focused on the confrontation at hand. The man starts the babbling about his kiddos and then turns and walks away with one of those lame flips of the wrist to put off the other adult in the conversation, Kimberly. As he walks away, Kimberly sees that no only has the mom teared-up, but she is now crying. Kimberly hugs her and bursts into tears as well, and then the shoppers start the APPLAUSE!!!!!! This could have been a movie scene! Needless to say, she returned to her husband in their car, and she was a crying mess telling him to, "Just drive!" I am so inspired by her willingness to take up for OUR KIDS!!!! Each of these children is created by God, and not only should a mother of an autistic or "special" or disabled child EVER need to apologize as she is as raw and real and exhausted and kind as any woman on earth, but she did NOT ask to be in this situation, nor did she EVER intend for her child to impose on any other human in any way. But it happens. We have to shop, occasionally go to a gym for a workout, take our family to church or a movie.....We find ourselves feeling like we need to tiptoe around the rest of the normal world, feeling like we don't want to disturb, disrupt or inconvenience anyone. But in truth, our children have the right to be who they are as they own this air we breath as much as the man in the produce section. It's true!
Kimberly is such an amazing lady, and her willingness to step forward on our behalf for another mother and child brings me to tears tonight. THANK YOU!!!!!!
Let us all use moments like this to inspire us to the ultimate compassion, love and kindness that God pressed into each of our souls as He sent us to Earth. Stand up, don't be afraid, and be an example.
Godspeed and be strong!!!
A bit of history: If you have never heard of Mat Man, he is basically a smiley face with a body, legs and arms and is used in most occupational therapy and special education rooms as kids who do not naturally begin drawing happy faces or stick figures are taught the basics over time, which for Garrett has been, oh, about 4 years now. But to date he had never drawn one unprompted, on his own, for his own pleasure. Well, that all changed!!!
When we arrived home, Garrett and Shelby met us at the kitchen, and Shelby hands me our camera and says, "You might want to look at this. Might be a blog!" And here is what she showed to me:
Much like a previous blog when a visiting little boy lost his mind trying to make sense of Garrett not understanding a video game, when in a former life I might have been saddened or angered, this time I had the same thing happen!! I started laughing, and then almost crying because the fact he drew on the walls of our five year old house's walls with dark blur marker on almost white walls means HE CAN DRAW MAT MAN!!!!! ALL BY HIMSELF!!!!!!! HOLY COW!!!!!
But here is the very best part. The artist worked in secret, apparently with no one noticing when he was creating his masterpiece, so when Shelby saw it she called him to it and talked to him about how "we" do not use markers or colors on the wall. But you know what HE SAID????? "But Shelby, it's YOU!!!!" And then he probably smiled that great smile and flashed those magical blue eyes and made her turn into a useless, loving blob of love and understanding!!!
And that, my friend, is how our boy is workin' the system, at least for now. I am sure he has more great tactics up his sleeve (which he is currently addicted to chewing on, thus ruining all his long sleeve shirts and sweaters).
Oh, and by the time we got home Shelby had ALL of the blue off of the wall, thus the need for the photo! And there is another blog for another day......having caregivers who love our family enough to savor the good, entertaining, hilarious and tough things right there alongside us.
Tuesday, January 17, 2012
I am one of those people who rarely will cry at a funeral but will use a whole box of Kleenex at a wedding!!! There is just something miraculous and very emotional about that bonding of two people....well, unless you know you are attending someone's "first wedding," as Grouchy once described a friend's upcoming ceremony. Let's face it, we could all tell it wouldn't work.....but the two young lovers could not!! And when it comes to the emotions I have toward the people who work with Garrett, I am a total, useless mush!!!
I cry at the end of a school year as we say so-long to teachers, therapists, and aides. I cry when a therapist moves away or changes jobs and says goodbye. I cry when a caregiver has to move on to other clients and away from our lives. And I even lose it sometimes at doctors' offices when the doctors and nurses love Garrett so completely!! What a mess!!!!
But for now I want to introduce to Garrett's Shelby. She has probably graced the blog before, but this is a recent photo of them together. Shelby is Garrett's developmental therapist. She is a full time high-schooler, and a perfectly delightful, beautiful, fun and SOOOO SWEET young lady. She has out total trust and complete appreciation for the 22+ hours she has Garrett every week. And this web site doesn't have enough space available for me to expand on how amazing she is with Garrett!
Sunday, January 15, 2012
We recently had some very dear friends fly from the eastern side if the USA to spend 5 days with us. We had a marvelous time complete with campfire, 2 days snow skiing, horseback riding, a night at a fun hotel with indoor pool and just hours of kiddos playing! Our friends have two kiddos, a third grade daughter and a first grade son. They are such fun, kind kiddos, and we cherish having time to really get to know the kids finally! We knew the parents from Grouchy's days of flying F/A-18 Hornet fighter jets in the navy and have stayed in pretty close touch over the past 14 or so years. Beautiful people!!
The day they arrived, Garrett and their boy, who is a year older than Garrett, began to play. Well, it was more like the friend playing with Garrett's things and Garrett following him around chatting his ears off all the while! But an interesting thing happened. Both boys got their Nintendo DSi games out and sat together in Grouchy's recliner and played. I was marveling at how "normal" a sight it was to see Garrett just quietly sitting and interacting with a pal. At one point, they decided to play "versus," or put the same game in each DSi and choose to race cars against each other but both be able to see it. Garrett agreed, but I knew he probably didn't know what on earth it meant and like he does with the Wii, would NOT want to compete against anyone. Don't know why, but it's just that way with him. The other boy was so kind to try to show Garrett how to set it all up, and they got ready to play, but Garrett freaked out a bit and just decided he didn't want to play "versus." The other boy tried to explain, encourage and mmotivate Garrett to play, but Garrett just turned off his good attitude and quit trying. At this point, Garrett's friend jumps up out of the recliner, stands to face Garrett and starts screaming, "WHY DOESN'T HE UNDERSTAND......AAAAAAAHHHHHHHHHHHHH!!!!!!!!" Then the child takes off running away from the recliner and down our hall into Garrett's room, screaming in frustration all the while. Of course his amazing mom sprints back to talk to him to try to explain how to handle Garrett. And while maybe I should have found myself feeling bad for Garrett having a pal scream at him, I didn't feel like that at all! Instead, I stood in the kitchen in awe of the situation, a smile beginning to come across my face as I realized that Grouchy and I feel JUST LIKE THAT soooooooo many times daily when it comes to all things Garrett. Bad thing is that while it is okay for a first grader to react to Garrett like he did, it ISN'T okay for Grouchy and me to show how we REALLY feel!!!! I shared this with the boy's mom, and she was worried about Garrett and so kind to him and to me. I may have caught her off guard when I told her that her son said what I am usually thinking but cannot! And I meant it!!! Our friends had briefed both of their sweet kiddos on dealing with Garrett, but you cannot expect a normal elementary age child to really be able to tolerate things that are so darn weird every minute!!! The little boy was so kind to share so willingly with Garrett. They took turns on 4-wheelers and did enjoy some play time together. But this moment will never leave my memory as I see glimpses of the insanity through others' eyes!
I guess it all boils down to the hard part of being the grown-up. It's having to save face, be the example, increase tolerance.....for us anyway. Absent are the days where we can have a kid over to play with Garrett and not have to explain the exceptions we have to make or the reasons there is no reason in Garrett's dealings sometimes.....many times. It has to be hard for other children, but then again, maybe not. At least they can express their bubbling-over of emotion verbally and let the frunstation flow. I guess you all let me do that here, so I need to be thankful!!
Lots going on here, but off to do my nightly reading of the Bible as I picked up an awesome Bible designed to be read over the course of a year. I have always wanted to do this, but finally bought a Bible organized for this purpose and made myself stop everything else and focus on God's word every evening.
Many fun things to blog about soon, but not tonight. PLEASE pray for my online friend Debbie and her children, especially Hudson, who has Mito and recently started the experimental miracle drug. And the day he started it, his daddy, passed away. I sometimes wonder if this life can be anymore cruel. But then I try to keep remembering.....It isn't about THIS life.......