North to Alaska: Mt. St. Helen’s and More

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Elk dotted the hillside. We counted 10.

The kids were not all that excited to get another early start. After all, the Mount St. Helen’s visitor center didn’t open until 10. Still, I convinced them we should get on the road and boy were they glad we did. There was a drizzle most of the drive but we had the road to ourselves so could drive our own pace and we could stop in the middle of the road when good photo ops occurred. As we looked out over the view point we noticed a small herd of elk just on the ridge next to us. The elk watched us but were busy munching on branches and knew we posed no threat. Then around the corner as Rebecca needed a picture of the lava flow we spotted a giant herd. Most were lying down, waiting for the rain to let up. Then around the next corner one lone elk was just standing in the marsh eating away. We realized how fortunate we were when we drove back and did not see any of the herds.

I remembered when St. Helen’s erupted but about all I really remembered was that many people died, most from the terrible fast flooding, and that if the eruption had happened to the south, the city of Vancouver, WA would have been right in the blast zone. (A good reminder not to live in the shadow of an active volcano.) This is the closest we have been to a recent volcano and its impact on the landscape was stunning. When people talk about the human impact on our environment I think about how insignificant our actions are compared to just one volcano.100_1220

Oh, say, I wanted to remind those who qualify for the Federal Access cards, whether through disability or as a senior citizen, Matthew’s pass has gotten us in to all of the National Parks and other federally run centers. Hey, it’s your tax dollars at work. If you know someone who might be eligible be sure to tell them to sign up.

This evening we had a mini reunion with two more of my high school friends. We had great fun reminiscing and remembering our annual pumpkin pie fundraiser program we worked through the FHA. Thanks, Mrs. Wilson, for teaching us how to make yummy pies.

At dinner we all had to laugh when my friend Nikki and her husband told us their 17 y/o son didn’t want to come because there wouldn’t be any cute girls…and when they met Rebecca they instantly took her picture and sent it so Eli could see what he missed.

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Friends from Sitka High… yes, it was a few years ago.

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Friday: Seattle, sun, more fun, and yea! Dad is joining us.

North to Alaska: Hitting the Trail in Oregon

Note to all burglars: Yes, I am blogging about our great adventure to Alaska. But remember it’s posted on a delay. Now might be a good time to come rob me. I’m at the store picking up more ammunition… but careful, I’ll be home in a few minutes. And to everyone else, this year we are driving all the way from the hot desert of Arizona to the cool climes of Alaska. Chapter 1 covers our travels up through Washington.

After our usual early start we drove through the morning fog turning off toward Crater Lake. The distance wasn’t that great but narrow winding roads caused me to underestimate this portion of our trip. Add to that the fact that I wasn’t able to fill the tank and it made for a long day. Why couldn’t I fill the tank, you ask? As we learned, in Oregon it’s illegal for us ordinary citizens to pump our own gas. That’s a fact I didn’t remember until later, after I messed with the machine and finally got it to take my credit card for a set amount. A few minutes after I got the gas pumping the attendant came rushing up. He very kindly told me that he would just ignore my major faux pas but I should let him pull the receipt out of the pump. Sheesh.

A picture postcard day at Crater Lake!

A picture postcard day at Crater Lake!

Anyway, back to Crater Lake. I know, I know, I am sounding like a broken record but you HAVE to see this place. It is so worth the drive. And make sure you go late enough in the summer that the roads are open. We were able to drive our planned route from the south entrance to the north but travelers hoping to circle to the east discovered the roads were still snow covered and closed. Also, when you go it might be good to plan on two days because the lake is often enshrouded in clouds so many people don’t see it the first day.

It's not quite summer at Crater Lake.

It’s not quite summer.

The roads both in and out of Crater Lake follow raging rapids from rushing rivers. All are spectacular, especially to these desert dwellers. There are some beautiful National Park campgrounds for the hardy right along the rivers’ edge.

This is the view from one of the camp sights on the way in to Crater Lake!

This is the view from one of the camp sights on the way in to Crater Lake!

We returned to the I5 just in time for a major traffic jam in rainy Portland. The storm clouds and chilly weather put a quick stop to our planned tent night. But the friendly folks at Motel 6 kept the lights on for us just across the Washington state line.

day 5

Tomorrow:  A Volcano and a Reunion.

North to Alaska: California Girls

Note: This is a blog of our travel adventure driving all the way from Arizona to Alaska…and back. Chapter 1 takes us up to Seattle. Come along with us!

I bet you’re already humming some Beach Boy tunes, just as you read that title. I know I am. This morning we got up “way too early” according to Rebecca, so that we could get over Donner Pass and into Sacramento. We made a pit stop at Lake Tahoe, and boy, was it worth it. The snow-capped mountains and tall pines perfectly framed the sapphire blue lake. Add this place to your bucket list—it’s worth the drive. I know Matthew will be excited the next time he watches Bonanza and spies the lake in the background.

At the shore of Lake Tahoe.

At the shore of Lake Tahoe.

Off we went, the next stop being Donner Pass. The pass is significant to Oregon Trail history; if you don’t remember the stories, they’re worth looking up.

We met our first California Girl, who is really Arizonan and a friend of Rebecca’s. Jessica is a 2nd year veterinary student at UC Davis. Since we didn’t have much time, she took us on a quick tour of the campus’ beautiful arboretum while we visited. The girls compared stories about being in graduate school, and reminisced about fun times at ASU. Jessica is going to specialize in large wildlife animals, so if your tiger gets a thorn in its paw, give her a call.

ASU Alums Jessica and Rebecca.

ASU Alums Jessica and Rebecca.

Our second California Girl met us with her son for lunch. Karen and I became friends initially from Twitter, can you believe that?! Our connection is that we both have sons with autism. Not only is Karen a lawyer by trade, a wife, and a mom, she is now working on a fantasy novel. We expect that she’ll be the next JK Rowling. It was so fun to visit and talk in person after years of chatting online, but the funniest part came at the end. In order to understand how funny this was, you have to know how Matthew gives hugs. He readily and willingly will go up to someone for a hug, as long as they hug him. His only effort is to turn his cheek to the side. We learned that Karen’s son hugs very similarly; neither extends their arms. So when the two were asked to give a parting hug by us mothers, each boy leaned forward, turned his face, and suddenly realized no hugging was occurring. So they both slowly raised their arms, slightly embracing the other. It was very cute, at least from this mom’s perspective.

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A couple of cool moms and their cool sons.

We made up for lost miles by traveling to Yreka, California. I survived Rebecca’s freeway driving once again, though I have to clasp my hands together to refrain from grabbing the wheel when on high bridges.day 3

Upcoming: Oregon.

North to Alaska –Our Journey Begins

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Appropriately, Frosty will accompany us to Alaska.

If you have never visited west of the Mississippi it may be hard to imagine how vast our country is. As we begin our trip north we decide there is no easy way around it. We must travel one long day to escape the desert. So the sun was barely peaking over the horizon when we headed out.  We left poor Bob, both worried and sad that he wouldn’t be there in case gasket blew. But twelve hours later we arrived safe and sound at Mammoth Lakes, California and decided that was the end of our day. For your sake, and in anticipation that you might one day actually want to travel this trek, I am not posting pictures of the arid, flat, dry, hot, windy, roasting, blowing (did I leave out any adjectives?) desert. But when you do cross in the luxury of your air conditioned vehicle, think for a moment of what our pioneer forefathers must have struggled, in the open sun, little shade or water available.

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The view from our campsite. Two things to notice: Yes, that is snow on the back of Yosemite and yes, that is McDonald’s in the background–you didn’t expect us to go too rural the first night, did you?

You’d be proud of how well we put up the tent. It wasn’t quite as easy as our practice runs since the ground was sand and the stakes kept popping up and there were giant wind gusts threatening to blow everything away. But, after forcing three stakes in each holder the tent managed to stay put!

Hmmm, for some reason the tent doesn't look nearly as pretty as when we practiced at home.

Hmmm, for some reason the tent doesn’t look nearly as pretty as when we practiced at home.

The Mammoth Lakes area is really very beautiful and we think it would be a good place to return to and spend at least a week exploring. It’s also only a few hours over the pass from here to Yosemite and all the wonders of this park. Oh, and those of you in AZ will laugh because all the Forest Rangers we talked to said many of the areas and roads were just opening, summer really hasn’t started yet.

Okay, so enough of the tourist stuff. I know you are just anxious to hear the real scoop on our trip and here it is. As I said, we managed to get the tent up without incident…and we were excited that it did not fall on us. However, we were not so lucky with the air mattress. For whatever reason, the dropping cold temperature or gremlins or maybe operator failure, the air mattress deflated within two hours of going to bed. And someone, yes, someone who was initially very warm, suddenly discovered that a flat air mattress and no sleeping bag underneath gives one a very chilly night. And a long night.

But never fear dear ones. We will try again…very soon…

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Our journey, thus far.

Tomorrow: Nevada.

Crunch Time

It’s 110 here in the shade today. Not the kind of day to be messing around outside so in my cleverness, I measured the inside dimensions of the truck and taped it out onto the living room rug. We are able to ‘prepack’ and assess how things will fit together for the trip. Stuff we don’t anticipate needing or won’t need until weeks in will be put in the front and stuff we’re going to pull out every day will be more accessible. Of course, this plan will only work for sure on Day One. After that, it’s highly likely that everything will be shoved in wherever there is space.

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The tape lines measure the inside of the truck.
It has made packing so much easier and a whole lot less sweaty!

We’re at the stage of planning where everyone is worried. Even the cats. They are sneaking downstairs to check out all the strange things in the living room and are more skiddish than usual (yes, it is possible…) Matthew is worried that I’ll miss some of his critical and important books so continues to haul things out of his room, packing his own bags. Rebecca, the girl who loves the Sheraton and thinks roughing it is staying at Motel 6, is worried. Her unspoken thoughts continue to revolved around: lack of electric hair dryers, sleeping bag, tent, walking to the bathroom at night in the dark with the wild animals. Bob, on the other hand is just worried. Work is busy and they are used to calling him for support. He worries that we will have a flat tire (even though we have roadside assistance service). He worries that we’ll have some kind of disaster and be out of cell phone range so he brought home a satellite phone. As protector of the family he worries all the time that he needs to be able to help especially since he won’t be along the first leg of the trip. My big worry is that we will be driving 8,000 miles. I think that is further than I drive in a whole year. We did the math and I think we have to average 300 miles per day which seems daunting of itself.

The family wants to know what to expect. We are learning patience and acceptance. Type A Bob and Rebecca would like to see every day planned out. But this is not a trip where everything can be scheduled in advance. There are so many factors that will influence our days. Will it be rainy and cold? Will the land of the midnight sun keep us from sleeping and everyone’s tiredness slow us or will we be energized by the 20 hour days and be up by 4 ready to go? (I know you are asking, “What happens if the transmission goes out in Whitehorse, Yukon Territory?” and you’ll be pleased to know the plan is to continue forth even if we have to rent a Kia.)

If you are interested you can check out the view of Mt. McKinley from the Denali Webcam. We have been watching the cloud cover there every morning. Apparently, only one-third the visitors actually get to see the our highest peak free of clouds. We’re hoping to be in that minority but I was reminded by Mom of the time we camped there two entire weeks and never saw the mountain only to drive back home by Anchorage and see it shining clearly in the sunlight. So, will we or won’t we? You could take bets on this… Ever hopeful, I am voting we will see the peak.

In just a few days we’ll be on the road. And just as an fyi to any would be burglars, this post is on a time delay and it’s highly likely I am already back home sitting in the rocker, Bible in one hand and Ruger Semi-automatic in the other…

Okay, gotta run and buy a copy of CW McCall’s Convoy cd.

What?

You don’t know who that is?

Well, here you go. Ramblin’ Rose is 10 – 10 on the side.

North to Alaska ~ Reality Check

Now don’t worry, the trip is still a go. In fact, it will be here soon. Today I just wanted to give an update. I think you all know everything that has happened, but then I remember I think lots and write little…

So here goes.

The plans are coming together. We’ve begged and borrowed everything needed, from air mattresses, to a camper shell for the truck. But, wait.  I’m ahead of myself.

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We have been practicing pitching the tent.

Did I tell you we are taking the truck? It has few enough miles that it’s still in good shape but old enough and with enough dings (read hail damage and a few experiences with a teenage daughter) that we won’t cry if we drive over rough road and find rocks. The always safety conscience husband has insisted we change the oil, check the windshield wipers and other lame stuff that should be unnecessary to look at for the life of the vehicle. And my folks are letting us use their camper shell so everything can stay dry and we can pack more stuff.

Yes, more stuff… because my idea of just tenting occasionally has grown into camping as long as the weather permits. We’ll also be cooking most meals, which makes sense when you think about Matthew’s dietary restrictions this way we’ll be able to eat pretty much like at home.

The folks also loaned us a ’30 second tent’ which pops up in just 30 seconds and they had a port-a-potty which will be put into the 30 second tent… Thus solving the significant “peeing behind the bushes” dilemma.

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Key items ready to be packed include OFF (of course), the dried fake chicken chunks, and hey, note the prized camera bag loaned to me by my photo journalist mother!

Our friends loaned us a very nifty plug in cooler which will help keep foods chilled…at least until we camp in snow 🙂 We also have borrowed a camp stove, portable grill and various and sundry other things. About the only thing we’re not borrowing is ourselves. No wait, we owned the First Aid box. Naturally, first aid is the doctor-to-be’s responsibility and of course, she is having a fit over all the supplies in the box being dated 1998…

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Not only do we have to learn how to cook on the Coleman stove, but how to percolate coffee.

So the plans are all coming together. We’ve mapped out our route and will see friends and family along the way. The length of the trip is daunting and we’ve already had to make cuts in some of the more frivolous stops along the way. (The good thing is, we will have places to visit the next time…) The kids are excited. None of us can really know what to expect. There will be lots of family time. Often when I tell Matthew we are going to do this or that he stomps around in protest.  But he is surprisingly interested in the trip. Of course, as you may recall, he loves the maps and continues to peruse them daily. We talk about the people and things we will see and I know there are several special people along the way that he is excited about seeing.

Due to concerns about the safety of our cats…and our cat sitter…I made an executive decision to post updates on a delay. Burglars and thieves should note that as they read about our expedition chances are very high that I will be sitting in the living room, upholding my second amendment rights, polishing my Colt 45. So the questions will be: Is it real? Or is it Memorex?  Am I reading something that happened today? Or was it three weeks ago??? Okay, I’ll give you a few clues…the seasoned adult or keen observer, who has read beyond junior high Social Studies will be probably ferret out the truth.

Today it is 99F here in the Arizona desert and the temperature will only go up for the next month. Rain…or snow…we are looking forward to spending time in the cooler climes and experiencing the land of the Midnight Sun.

Oh…wait a second…shoot. I almost forgot the most important thing! We will be on the CB radio! (Yes, of course, borrowed…) And even better, I already have a handle. Just give me a shout out: Breaker, Breaker, One Nine… Ramblin’ Rose, You Got Your Ears On…

Just Another Day

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This week Matthew decided he should mow the lawn. Will wonders never cease?

Sometimes we parents with special needs children go along and don’t realize how different our lives are. I was reminded recently when Rebecca mentioned to some of her friends that she was caring for a special needs girl. She told her fellow students that working as a caregiver was a very good part time job that she could continue to do while in med school and recommended it for those looking for work. But they were hesitant; they had never been around someone with special needs; they didn’t know if they could do the job. Rebecca was surprised but that’s because being around someone with different needs has always been part of her life.

So today I am sharing just a couple incidents that might help you better understand the uniqueness of life at our house.

The M  O  V  I  E

Everybody likes to go to the movies. Right? So does Matthew. But with two distinct differences. The first, you might expect because he has difficulty sharing emotions, is that we do not go to movies that are too intense. Poor Matthew gets so caught up in the movie that if the good guy’s life seems in peril Matthew feels it deep in his soul and doesn’t know how to handle the fear and worry. We always try to have someone preview the movie first. The second thing is actually pretty crazy. There are many movies Matthew doesn’t care to see. But when he decides on one, well that’s the one we have to see first. He doesn’t want to hear about another movie, even though he might like it just as much. It’s first things first. Always. Last year he decided he wanted to see the dumb Smurf movie. And that was it. Even though there were many better movies that he would have liked we had to wait for the Smurfs…which didn’t come out until August.

Actions Have Meaning?

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The heretofore unexciting picture of Mont St. Michel

Sometimes when you have a non-verbal child…okay, actually every day…your child does something that catches your eye. You know it has meaning and you just wish you could understand the reason. Here are two examples from our house this week:

Bob and I were sitting at the kitchen table talking about nothing important, Matthew was on his computer and the television was on, maybe Matlock or a commercial. I wasn’t really paying attention. But suddenly, Matthew leaps up from his chair and runs over behind the couch looking directly at the TV. He held a postcard from a steamboat ride we had taken in his hand. He raised his hands up as though he were going to lead the benediction at church and stood there frozen, arms outstretched for nearly a minute. Finally, he pointed the postcard towards the TV, as if to show either the television or maybe Andy Griffith or the boat on the postcard something. And then walked back to his computer as if nothing had happened.

Yesterday, I was walking on the treadmill while Matthew was watching something on TV when a commercial came on. (Commercials are usually his time to find a drink or chips or just generally wander around because they don’t hold his interest.) But this time he jumped up and ran over to the fireplace. He looked up at the photo of Mont St. Michel and raised his hand up toward the sky with finger pointing. Something like a ‘We’re number one’ pose. He stood there again for a few seconds then went and sat back on the couch.

He has never done either of these things. There was a distinct point to his movements but what? We might eventually figure it out. Or not.

Enough for today.  I’ve rambled on enough and we’re all good here now–as long as we don’t mention the m o v i e . . .

Oh, and by the way, if your child talks and communicates with you, good or bad, you are fortunate. Just think of me the next time he gives you the ‘What For?’ business and give him a hug.

More Teeth News: Trying Teeth Varnish

I forgot that I talked about teeth last month. But around here, it’s all about teeth.

After a second lecture from the dentist I promised to do a better job brushing Matthew’s teeth. I know you are asking, “Why can’t he do it himself?” And the answer is simple. He does but…and as you are reading this just say out loud: One. Two. Three. Done. Yes, that is how long Matthew brushes his teeth when left to his own devices. (He does the same shaving too.) He is always pleased that he has done it himself but the thoroughness is lacking.

So we bought the Oral B with a timer and I brush in the morning while Bob takes the night job. We’ve been using the prescription toothpaste for a year too. Still according to the dentist, brushing is only part of the solution. At the his recommendation we purchased fluoride varnish. The hygienist was going to track down how to order it but after some research we discovered it was available for purchase online without going through the office.

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This tooth varnish is called Duraflor. It comes in a box of 32 little brushes and dabs of varnish. It’s not inexpensive, I think I paid $65 for the box. But if it helps Matthew’s teeth it will be well worth while. (Did I tell you we already take Matthew for a cleaning four times a year instead of the normal twice?) I don’t know why his teeth are so bad. Is it genetics? Is it the Celiac Disease or just diet? Is there some connection to Autism?

In any case, it’s his lot in life to have very weak teeth that are more prone to decay. (And remember, Matthew is like a cat when turned on its back when he sits in the dental chair… lots of wiggling and worry that doom is impending…) so we want to limit the amount of work he needs and strengthen his teeth as much as possible. We limit sugary drinks and candies but to date that has not been enough.

Which brings us back to the tooth varnish. Today was our first use. The varnish is…well, varnishy… it has some kind of nasty taste and smell, though this box is labeled spearmint. It stays liquid until it hits moisture, including saliva, so its important to paint it onto dry teeth. As soon as I started I realized Matthew’s salivary glands went into overdrive so speed is of the essence. We got it on. Since there was a little leftover I painted it on my own teeth and I can attest to the flavor. Yumm…not…and it has a lagging aftertaste that is equally unpleasant.

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This picture really doesn’t show the effort needed to paint it on. I need at least four hands and a tongue pusher. I am hoping we figure out a more smooth way to do this. But I’m not expecting any miracles to put it on because after all these years of teeth brushing it’s still a daily struggle.

Back again to the varnish. Hey, the stuff is gluten free. The hygienist recommends we use it once a week. I also read several reviews from people who had used it weekly initially, with great success. Eventually, they transitioned to monthly use. Oh, and here is my disclaimer: Taking fluoride has risks, as well as benefits, so does having no teeth; there are possible reactions to the varnish and there are disclaimers on the box; and you should only use on the recommendation of your dental professional.

That said, I feel hopeful that the dentist will see solid improvement at our June visit. I’ll keep you posted.

When a Special Needs Child Grows Up

We’re getting ready to visit the dentist. Regular readers are familiar with our trials and challenges finding a dentist who has patience to work Matthew. Today it is just another cleaning but I know the cap on one of his teeth is chipped and they’ll be wanting to fix it. Since I discovered the chip I’ve been thinking about this new challenge. Though Matthew is an adult he still acts irrationally when it comes to messing in his mouth. The only difference between taking him to the dentist today and from when he was five is that he is stronger and weighs more.

It’s a challenge.

Today’s reality was brought to the forefront when I read a story in the New York Post this morning. A handicapped man, one who graduated from high school in their special education program, and was arrested last week.

His crime?

Laughing too loud. Yes, it’s true. You can read the story here: New York Post. This 42 year old special needs adult was given a summons for disturbing the peace and faces jail time for his chortles. The charges were brought by a neighbor who apparently sees this man as an object for ridicule as the report says that he, the neighbor, often calls the man names, including retard and worse.

It’s appalling that the police even considered this an offense worthy of a ticket. But it’s not a surprise. And the neighbor’s actions are not completely unexpected. When a child has special needs most people accept or tolerate his inappropriate actions or words. But when that child grows up many more take personal offense and are affronted that this ‘adult’ does not know how to act in public or doesn’t ‘act his age.’

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Every day we work on this with Matthew. Sometimes he fits right in, working a tough puzzle or interacting correctly while shopping.

But other times he’d rather don a superhero costume and pretend he’s battling bad guys.

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Of course, we all like to indulge our fantasies but save wearing costumes for Halloween. It’s not seen as appropriate for adults to do otherwise. And while we have never had a neighbor so intolerant as to call the police, we have had neighbors who would not interact with Matthew, choosing to ignore him or mutter under their breath when he appeared.

Just like normal children, those with special needs grow up. Some disabilities cause them to act out their frustrations with unruly behavior. Some of my friends with special needs adults find that their children’s sensitivity to sounds or crowds or difficulty following direction choose to keep them out of the public arena. It’s a difficult choice and one they don’t make lightly. Our own family often chooses not to participate in certain activities where we know Matthew might act out, drawing attention to himself or causing a disruption.

Still, inappropriate behavior does happen and when it does others, including first responders, often are at a loss what to do. Unfortunately, there are a myriad of sad tales where a non-verbal autistic person becomes violent only to have the police or hospital staff resort to handcuffs and shackles or worse. As a mom I am crushed when I hear these stories but I know if a special needs person weighing 200 pounds acts in a dangerous fashion those around him may react in a way that further escalates the problem. Just last week there was a 14 year old whose mother took him to the emergency room for sickness but found that the large child’s behavior cause hospital staff to cuff him to the bed.

There is no easy answer for this, even with heightened awareness, those in charge can’t always control our grown special needs children. And like parents everywhere, sometimes even we can’t control their actions.

But well behaved or not, they still need to be loved.

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So what’s my point today? As usual I don’t really have one. But if you know someone with a special needs child, either teen or adult, who has grown out of the ‘acceptable behavior stage’ please offer them some compassion.

And for what it’s worth, Matthew did well at the dentist. Sat in the chair, let the hygienist clean and polish his teeth, let the dentist take a look. Everything but the x-rays. So we came home with our own piece of x-ray film and will practice until June. But…it’s progress.

A Story in Pictures

I know. Usually I ramble on and on. But today I have some pictures that tell the whole tale without much explanation.  If you know Matthew you know he’ll never lift anything that he thinks is too heavy, especially if it’s awkward. Sometimes it upsets him that things don’t go just so. But then, with a little cajoling he remembers he is as strong as Popeye.

High on the Mogollon Rim in Northern Arizona, it’s a lovely fall day. We’re out looking for firewood.

Dad cut this dead tree but the pieces are still giant.

Oh no! It was heavy and he didn’t have a good hold. It looks grim. But then,

YES! Stronger than Popeye!

The truck is loaded. Job done. Now… does anybody want to look at the TV guide?