All posts by Susan Taylor

The Elephant in the Room. Also, Education.

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I guess it’s a normal part of motherhood, the second guessing, the awareness of my unawareness, the perfect perception that exists in hindsight.

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But ok, before we discuss education, I have to acknowledge that I’m coming to the table much later than some others parents do. At a meeting last night about IEPs, there was a mother there whose child is 2yo. And Kepler is 11, which means she is 9 years ahead of me in addressing this.

You know, if I’d been able to do this when he was 2, I would have. And even though I know that, it still stings to be coming to this so late.

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So, about education. Kepler (and all children with disabilities) is legally entitled to FAPE, which stands for Free Appropriate Public Education. Such a small acronym but it contains a bushel full of concepts and information, none of which I will elaborate on here.

The trickiest part of his education for me is that I am an educator who taught some of our kids anywhere from K to 12th grade. A real do-it-yourself-er. So I didn’t really learn how to navigate the public school system; what the expectations are from year to year, what changes happen as the student moves to the next building, what kind of responsibilities are placed on the student in each successive grade, how to handle the disparities that come up between the school setting and the individual child’s learning style or personality or anything having to do with the social experience of school.

Throw into the mix developmental delays and it’s quite a tangled web to find my way through.

The trick then is to discover the balance between me using my good ideas and homeschooling experience, and working within the system and availing myself of their experience and resources. This may be the first time I’m being faced with working collaboratively with a team.

My typical grade on “works well with others” is “N” for “needs improvement.” I might look unprepared! I may be judged by others! I might ask a dumb question! But what if it really is possible to give and receive in this process, imperfectly, knowing I will make mistakes along the way, but trusting myself and trusting the process. I feel a slight stirring of hope, of energy around the current process.

I can wish all I want that I already knew it all, but that sure seems like wasted energy. Instead, let me take the next baby step in learning and keep on learning how to advocate for this boy and his future.

D is for Down syndrome, obviously

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I note my reaction to posts and fundraisers about other diagnoses. I don’t (can’t) read every piece about autism or Fragile X syndrome or Angelmans syndrome. I don’t even know exactly what they all are. There is only so much room in my brain for information, and there’s a lot to know about Ds. This reflection makes me realize that the rest of the world is not hanging out to know about Ds.

But pretty much all of us come into contact with people with Down syndrome, and we can all use a hand in understanding each other. So, let me tell you about Kepler, in case you meet him one of these days.

The social piece of Down syndrome

Kepler is the most (or at least tied for first with his sister) social member of our family. Everywhere we go people seem to know him. He becomes the connection for me with strangers and yet-to-be-friends. He cares about your facial expression, your interest in him, your desire for him to be a part of what you are doing. He loved helping our neighbor water his grass the other evening. He is careful and does the best job he can.

Kepler can be very easy to get along with, and he can also be tricky to get places with. He laughs from the depths of his being, and his determination is fierce. My job as his mom is to support and guide him in using that determination as a positive force, something that helps him become the best version of himself.

What You Can Do

Realize that every interaction you have with a person with Down syndrome is teaching them something. If you let Kepler stroke your hair or go in for an unasked-for hug, he is learning that it is ok to touch other people without their permission. Not much of an issue when he is little, but it becomes a BIG issue when he is bigger. Head him off at the pass by reaching out to shake his hand. Model for him what is appropriate, what you do when you come into contact with another adult or stranger. Tell him “Please ask before you hug.” Simple things with kindness.

The accommodative piece for Down syndrome

People who do not live with Ds sometimes think that the person with Ds must simply fit into the world’s expectations.  And while it is true that a person with Ds does have to get along with others and at some point do things the way their environment asks them to, those in his environment also must adjust to doing things more slowly, more deliberately and more times. This includes giving instructions, completing tasks, making transitions, and understanding how the person thinks about things. This delicate balance I am still learning to manage.

What You Can Do

Remember that behavior is always communication. Notice the context where it is happening. Who is there? What is happening right before and right after? Always allow extra time when working with a person with Down syndrome. The relaxed pace is better for everyone and truly gives the child/adolescent/adult the best chance to succeed.

Keep it Simple, Sweetie (The KISS method)

Yesterday, I online chatted with both Cincinnati Bell and Time Warner. Just a little thing in the course of a day. Many of us do similar things throughout the day. However, while I chatted, I also played basketball outside with Kepler, chased the ball, made sure I didn’t get disconnected on the chat, had the actual conversation, waited in line with Kepler, and told knock-knock jokes with him between chat comments. Doing all those things simultaneously is not ideal. It’s pretty stressful, actually.

Ideal would be leaving my phone in the house while I play basketball outside, and being prepared for every eventuality.  A motto of my family of origin was, “Make the most of every opportunity.” I think I have interpreted that to mean, “Do as much as possible at all times.” Those really aren’t the same, are they? Making the most of every opportunity means being present where I am, which happens to be wise advice for all of us, whatever our station in life.

What You Can Do

Consider abandoning multi-tasking, either altogether or for periods of time each day. I have noticed that when I provide half of my attention (or less), I get half as good (or less) behavior. Make sure you have his attention. Say his name and make sure he is listening before you give him an instruction. Recognize that simple instructions are best, and if you repeat them, use the same words. Even if you prefer variety, he thrives on routine, repetition and review.

What other suggestions do you have for helping someone with Down syndrome be as successful as they can be?

 

Chowing for Children


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(Note: Yesterday, I alleged that today’s blog would be all about giving children a choice. Seems that my plans changed. I don’t mind if you Sioux me.)

Look, it’s been a day, and the only similar phrase I could think of was Concert for Bangladesh, which happened in 1971. I know there is a musical group called Bowling for Soup which sings at least one Phineas and Ferb song. But I can’t think of any other [VERBING] for [CAUSE] phrases at the moment.

The title is a bit tongue (and donut) in cheek, actually. But it’s not all that far from the truth.

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You see, I’ve been working very diligently to perfect my stress eating techniques. I seem to be getting better at it all the time. It’s amazing how I can be driving down the road, heading straight for the drive-thru, and my the angel on my shoulder will be saying/singing, “Oh, YOOO-HOOOO, this is not a good idea? Sounds like something that rascal on the other shoulder thought up.”

And you can just bet that the rascal just smirks. Homer Simpson seemed like the logical choice for illustration because donuts.

Anyway. Stress lives. And food helps. That’s the kicker, that the eating actually does relieve the stress. Well, the initial stress anyhow.

All I can say is that I’m learning, people. Pretty darn slowly, most of the time, when it comes to this area. Glacially, pretty much. Although I must be doing something right because I do not yet have to iron my pants on the driveway. But, it’s not the best solution, by any means.

I love it when I write a blog post and think I’ve been extra helpful or witty or otherwise unforgettably readable. And then we have days like today when I use my blog as a confessional wherein I acknowledge there are some tasty thorns among the roses.

My plan is to be gentle with myself on the one hand, while smacking myself into shape with the other. Will that work? I will celebrate the hours (mostly while I sleep) which do not involve eating foods that are not taking care of me, and rue the minutes which do. I’m going to meditate 10 minutes a day, and during the other 1430 minutes try to hinder, interfere with, impede, hamper, obstruct, block, check, and/or curb my commitment to all things junk and avoid the self-driving-car-like motions of turning right into the parking lots of those places.

I’ll leave you with the incredibly deep words of my poem “Why Don’t Beets Taste Like Butter?”

Why don’t beets taste like butter

And why won’t sugar just drown itself?

And why can’t I, as a mother,

Leave those dog don* cookies on the shelf?

And why is all the broccoli so stinky,

And who makes the sweet-smelling bread?

Why is rest always over in a blinky,

And can you believe that sweet comfy bed?

I’m not a lazy lady,

No matter what I say.

My teeth and lips are especially busy

Getting me through each and every day.

So, today as you eat your perfect menu

Feel free to toss me a few good thoughts,

And today, yes, today, I WILL DO

What yesterday felt all for naught.

*dog don is Kepler’s version of “doggone [it]” and I simply am not going to ever correct that. It’s too dog don cute.

 

 

Books! Books! Books! Books!

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The night Kepler was born at home, his two older brothers (10 and 11 at the time) read him a book as they were getting to know him. Reading aloud has been the norm in our home since Valerie was a tiny baby 24 years ago.

Turns out, kids with Down syndrome are particularly receptive to reading personalized books. Books written about them, for them, on their level. You can imagine how this can wreak havoc, though, when they are being asked to read books about “Animal Noses and How They Smell,” and things like that. Those books have a place and I definitely want him to be able to choose to read any book he wants to read. It’s just that, and this is not an idea that is original to me, they learn best when there is some sort of context that is meaningful to them.

Oh The Humanity

One might think that having four kids who truly learned to read by being read to might clue one into the importance of reading to kid #5. Which we have, of course, but not nearly to the same extent as we did with the older four. The difference has been that we pretty much just read out loud every book we could get our hands on, and read to the older kids evening after evening after evening. All the way through the Lord of the Rings books, The Scarlet Pimpernel, The Count of Monte Cristo, The Three Musketeers, and so many more. Books that the kids didn’t necessarily have the vocabulary for yet, but learned so much just through listening to Greg reading the books to them.

With Kepler, I have focused more on easy readers. Until this past week. I had checked a chapter book (for him) out of the library and it had sat on the table for a good three weeks. For no particular reason, I decided to read it aloud.

He loved it.

Loved it! It’s one of a series about four kids in elementary school, and I think he really appreciated the sophistication of the story after sitting through five million readings of the Spot books. Not only did he love the book, he wanted me to re-read it. We read that book four times over spring break. And I love seeing how his brain makes connections between things we read and other places he has heard a word or a name.

The Method to the Madness

Now that I understand these two facts: personalized books, and higher-level material, I am so much more prepared to teach reading skills to him.

In tomorrow’s blog I will be expanding on the concept of giving him a choice, but that has come in handy with our reading aloud as well. Sometimes he tells me the book has too many words. Truly, he is not used to reading books with 60-70 pages, so I can understand that it might feel like a lot. However, I see him attending to and comprehending a lot of the story. But I still let him choose at times whether he would like for me to read one more chapter or two more chapters, two more pages or three more pages.

Having him home during Spring Break has given me a multitude of opportunities to experiment with teaching him in different ways. What I have discovered is a child who LOVES to learn and who is quite motivated to try hard when the material is connected to his life.

Vocabulary, Spoken Words, and Reading

And maybe the rest of the crowd already knew this, but I have just been learning about the connection between having a large enough vocabulary (800 words) to make reading an option.

Sue Buckley, of Down Syndrome Education (https://www.dseinternational.org/en-us/) shares the importance of actually writing down the words a child knows. With a typical child, they learn words so quickly, writing them down would grow exponentially on a weekly basis. But with Down syndrome, the child’s vocabulary grows at a slower pace, and certainly the expressive vocabulary can lag behind the understood vocabulary. So, it’s helpful to know what words my child actually knows; the ones he can read, the ones he can say, the ones he uses spontaneously, and the ones he speaks that can be understood by someone who does not know him.

Hearkening Back to College

I remember reading a book on language acquisition in children during my Developmental Psychology class. It was FASCINATING. And though Kepler may be acquiring language in a non-typical way, I am finding his process fascinating as well. And boy, am I glad I am along for the ride.

 

 

An Angry Authoritarian

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Not my actual kid, obviously. Not my actual arm, either. You can tell because it doesn’t have an Apple watch on it. But these attitudes certainly can crop up in my actual kid and my actual arm.

Years ago, I read a book called “Shepherding a Child’s Heart.” I loved the idea — to get to the heart of the child, helping them to understand their need to submit their will to the will of those in authority over them. Honestly, the idea still resonates. But, turns out, being an authoritarian parent doesn’t actually work.

As a child, I was highly motivated to do the right thing. This, however, did not extend to my attitude about doing it. I mainly wanted to avoid punishment and disapproval. So I might have looked really shiny and obedient on the outside, but inside I was just biding my time. I didn’t REALLY believe I had to do what someone else wanted unless they were bigger and stronger than me and held the key to the cookie jars of life.

The Pendulum of Parenting

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Turns out, I’ve been rather a pendulumatic parent. Swinging over to authoritarianism, just adamant that my kids would do what I told them to do. “I say jump. You say how high.” AND YOU JUMP. Then swinging back over to permissiveness when the glaring flaws of authoritarian parenting got too glary.

The current child who needs parenting doesn’t respond well to authoritarian parenting. (Does any child truly respond well to this in a long-term “this turns out to be a good thing” kind of way? I vote no.) So, I’ve been on the permissive end of the pendulum for a long time. Guess what. Being permissive works, but makes your kid unpleasant to be around, as they do what you tell them . . . IF they want to.

The Best Laid Plans

If only I could say that I had made plans and stuck to them all along. But the main plan I had was just to get through another day. Somehow, in spite of all my careering left and right, our 11-year-old son (with Down syndrome) is a delightful child. So fun to be around, funny sense of humor, cute little “Keplerisms” throughout his language.

But, we do have this issue of him being quite selective in his choice to obey or otherwise heed directions from his parents and other adults in his life.

Having a Choice is Da Bomb

Humans like to have a choice. We like to feel some sort of control over our lives. Yes, control can often be an illusion, but not always. And Kepler is a human, and he likes to have some control over his life.

I think of all the challenges that he faces — being understood as he struggles to articulate the words he is saying, implementing executive planning functions when he is asked to do too many things at one time, figuring out the whole social scene with what is appropriate and what is not. Things that all kids face along the way, but maybe have more success in reaching those milestones earlier in life. And it makes sense to me that he simply wants to have a say in things.

Problem comes when the things he wants to have a say in are not really things he gets to have a say in, in the fashion he is trying to have his say!

Remedial Parenting, Not Even Parenting 101: The Power of Choice

Ultimately, I would like for him to come to a place of understanding that the adults in his life care about him and therefore he can trust them when they give him a direction and therefore it’s actually in his best interest to comply. This gets complicated when the adults in his life are imperfect and give him a direction that is more for THEIR best interest. So, as much as I initially thought it would be so dreamy for him to just give me first-time obedience, every day, 24/7, in the long run, I think that focusing on the relationship as the primary value is where I want to have my pendulum rest.

For now, I am working on giving him a choice between two options that are both appropriate. I told his pediatrician, “I just want him to do what I say!” And she laughed. “Don’t we all! All of us parents would love to have that happen.” Giving him a choice is a bit of a backdoor to him obeying, because I don’t really think this qualifies as obedience when he is the one making the choice. But, baby steps are still steps.

So I am stepping back from wanting to demand obedience. However we got here, when I demand anything, I pretty much end up getting the exact opposite. For now, I am focusing on helping him be successful in completing tasks, getting places, making good decisions, and maintaining the relationship. Then we can build on those successes and start to learn how to do things we don’t want to do right this minute.

As Per Usual, Parenting is a Microcosm of Life

I am most comfortable with structure and clarity and routine and confidence. Huh. Turns out, so is Kepler. Life doesn’t always provide structure and clarity and routine, now does it? So, learning to adjust to change, even changes that seem or are unfair, is part of growing up into a successful adult. I still struggle with it, to be perfectly honest. But I’m learning. And he will too.

 

 

2017 A to Z Blogging Challenge

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This year, I will be participating in the A to Z Blogging Challenge, mostly to get myself back in the swing of blogging regularly. I have made some good online friends and found some interesting blogs through this process in the past. Those two things would be pleasant to experience again, but I really just need to get to blogging again.

My theme this year will be “A Crash Course in Being Me.” I realize that my blog hasn’t ever been something that appeals to the masses, and that is ok. If I can entertain one reader, if I can inform another, if I can persuade someone, or provide a possible solution to a problem — those small connections are all I desire.

As well, there is nothing so helpful to me as seeing ideas in print. Podcasts are great. Presentations are interesting. Lectures can be stimulating. But being able to read the words is the way I really learn.

I have a lot to learn right now, and always, and my blog is a place where I put those lessons so I can see them again and again.

The true subject of my blog for the blog challenge is parenting my special needs child. He is 11, and was born with Down syndrome. He’s completing 4th grade at the moment, and keeps me busy from sunup to sundown, and then some.

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Coming out of Hibernation

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How else can I say it? I have woken up.

One month ago tomorrow, I went to my therapy group feeling pretty overwhelmed. I left group feeling inspired and energized. It bugs me that I cannot explain this seismic shift in my attitude, perceptions of capability, and energy level. Why now? I don’t know and I wish I did. It feels all just a little precarious since I can’t point to anything directly which is clearly the reason why I woke up. “Like waking up from the longest dream …” as the old Phil Keaggy song says.

Me: the morning of February 23.

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Me: the morning of February 25 and pretty much every morning since then.

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OK, so maybe I have a couple of ideas about some of the possible factors in this shift, but still I cannot explain it as “First A, then B.” And I guess that’s kind of how a lot of things are. Life is a series of experiments and a series of reflections on the experiments and a never-ending repository of new opportunities to respond to the next thing.

So, top of the morning to you. I had a nice nap.

 

 

 

ibotta? or iSTOLEa?

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I read about this app on The Penny Hoarder as something you can do to earn a little passive income while doing other activities; in this case, grocery shopping, something I do multiple times per week. They are smart enough to offer a $10 bonus for redeeming your first rebate, which is a pretty substantial perk.

Downloaded it, and decided to give it a try. I usually use scan/bag/go at the grocery, so I’m already scanning every item I buy. But I’ve also noticed that I am thinking about several things at once while I grocery shop — you know the routine — do I have a coupon for this product, oh look they have that buy 10 save $5 special, oh hey i need some of that thing there that I forgot to put on my list, etc. And STILL I thought it would be a good idea to add one more thing into the mix at the grocery store. Well I LOL.

Checked out the app and looked at the higher rebate amounts and tried to figure out which things I was already going to buy or which things might be reasonable to buy if it wasn’t urgent that I get them. Fitting the bill was Duracell batteries, offering a $3.00 rebate for purchasing a couple of 8-packs.

The way the app works is you scan the item’s bar code, and then later scan your grocery receipt to prove you bought the items and then they credit you the rebate. I scanned the two packs of batteries, and later scanned my grocery receipt, and noticed in a few days that I hadn’t received the rebate.

Well, ho ho ho and ha ha ha. Since I scanned the bar codes with the app, my brain checked off “scan item” and I forgot to scan them with the scan/bag/go scanner. Which meant, in effect, that I stole two packs of batteries, although I didn’t realize what had happened until . . . . today, I shopped again and did an ibotta purchase, but found when I got home that the product was not on my receipt. Which meant, in effect, that I now also had stolen some bacon. (Not to be confused with this game.)

Seemed like the thing to do at the time to drive back to the grocery store and pay for the items I had inadvertently stolen. Which I did. But I must admit to being a little surprised that the customer service person expressed not even one iota of emotion about the fact that I was returning to pay for something I hadn’t paid for earlier. Years ago, I returned to a store in Australia to pay for an item that had been hidden in my cart. It was only worth a dollar or two, but the customer service rep in that case was noticeably responding to someone coming back to pay. Like honesty, man.

I didn’t need the customer service rep today to pat me on the back or sing my praises, but a simple, “Thanks for coming back to pay for this,” would have sufficed.

So far, I’ve earned $15.75 through this app in what should have been one trip to the store. I can withdraw the money as soon as I reach $20.00. Although there was a bit of a learning curve, namely let’s not steal these items, I think this will end up being a simple way to cut my shopping bill just a little bit. If by any chance you would like to try it out, I do have a referral code — dwjhyql — and the referral link. (It’s not just grocery stores, but most of the items I have seen are grocery or household or personal care items.)

OK. Gotta run. I want to keep one step ahead of the grocery store employees.

 

Woman’s Golgotha

This is a poem written by my beloved Alexander technique teacher, Ellen Bierhorst. I am choosing to publish it today because of the March on Washington today. I’m sure, as in my own city, there are smaller marches throughout the US as women and men stand to make their voices known for the rights of women. My family is represented at the local march today.

And now, the poem.  Let there be love:

Woman’s Golgotha

Well, I don’t know, Jesus, who brought you back to life on the third day,

But I know they always made a big deal of it and scared us as children

Saying you shed your blood for all of us,

But godamnit I, a woman, shed my blood for human kind not once but every month for forty years!

I don’t know who resurected you, Jesus,

But I know that I, a woman, resurected myself!

In the pit of hell, all Light extinguished, I made the awesome decision

That even though the reality of love had been disproved,

Even though the lamp of hope that had burned in my life, alone, strong and true had been shattered by my beloved,

Yet I would not accept a universe without love.

And I saw that my task could be healing Sickness as it wound its evil through my own life:

An insane marriage to a good but raging man,

A work life riddled by denials and repressions,

Family finances plagued by fear and inattention,

A big old house full of junk and mess, sagging into ruin.

Greatly more than my small courage and strength could face,

Yet for you, for Love itself I faced them all

And vowed to spend my life cleaning it up, setting all to rights.

For myself alone I had not strength to try, but that July day I wrote on my wall

In four-inch letters, “For you I will triumph over all my darkness!”

The only huge work, the only mountain I could sculpt, the only sea I could turn.

People say that it was such a horrible thing to die hanging on a cross with nails in your hands.  And it is.

But people act like nobody could match or top it.

That’s what I thought too;

As a child I squirmed at night and sweated, envisioning the tortured corpse on its cross of fear.

Well, move over, Jesus.  I, a woman, have been to Golgotha…

And my sisters cover the earth.

Alone and in the darkness, I, a woman, stood and said Let there be love!

And my sisters cover the earth.

For more information on Ellen and the many ways she makes this world a more beautiful place, see this website.

 

What is all this crap

Haha. It’s not crap at all. Just sounded better than “Look at my Cool Stuff.”

Should I Stay or Should I Go Now?

img_7864I got super tired yesterday, and sometimes I can be a little under the weather the day after a big day. So I was debating this morning whether or not to go out for my walk/run. Finally, from the security of my warm blankets, my Accountability Elephant agreed that it would be preferable to err on the side of being sorry I went rather than being sorry I stayed under the covers.

The Things People Leave Behind

Note the crumpled up page of comics from the newspaper. I had the good fortune the other day of discovering a delivered newspaper that was not delivered to anyone. It was just in the grass on the side of the road. I brought it home and enjoyed it immensely. The best part, honestly, was the comics page. They now print that on a stiffer card stock, and the entire other side is the puzzles; the basic and advanced crossword puzzles, the cryptoquip, sudoku, and the jumble. I really miss those puzzles! Of course most of them are available in one form or another online or via an app, but I have wonderful memories of doing all those puzzles back in the day.

The comic page was on the driveway at the entrance to one of the local schools. Maybe a teacher brought it along to do during recess? But, like my random newspaper the other day, this was clearly abandoned and therefore I was not being a stealing thief by picking it up. (NB: the original owner actually did do the cryptoquip, so I’m out of luck on that one, but the rest of the page is clear and ready to be filled in!

ROTW (Right on the Way)

Moving clockwise in the photo, you will see a small piles of glasses cleaning cloths. They’re pretty small, so I might have to use one per lens, but since there are four people living here who wear glasses, one can never have enough cleaning cloths. I stopped into an eye doctor’s office near me this morning to inquire about these cloths. I don’t know where all of mine have gone, but I can never seem to find one when I need it.

Next, you will see two screws. (Isn’t this exciting?) I took one to the hardware store to buy a matching one. 12 cents for that shiny new screw.

Lastly, a total impulse buy at the chiropractor’s office. A Standard Process Cocoa Cherry protein bar. That one gets a thumbs down from me. The package looks much prettier than the bar, which looks rather like brown play dough and is about the same consistency.

Bottom left hand of the photo you will see the back side of Pepper, our cat. She was very curious when I emptied my pockets.

Something Needed, Something New

Not shown is the new thermometer I got so I don’t have to keep telling the doctor that I don’t know whether or not Kepler has a temperature. It’s one of those that you just place on the forehead. I took my own temperature. Easy peasy. It even says the temperature our loud, in case I’m too weak and feeble to be able to read the numbers on the screen.

And The Moral of the Story

The moral of the story here is that it is most often the better choice to get up and go exercise. At least for me. And even though it’s a mostly gray day here, again, being outside gives me all kinds of great stuff – both tangibly and physically, and that makes me want to write and share it all with you.