Days of the Week

Do you know the song? I think it's to the tune of the Addams Family. "There's Sunday and there's Monday, there's Tuesday and there's Wednesday, there's Thursday and there's Friday, and then there's Saturday. Days of the Week *clap! clap!*

Getting kids to do chores... is a chore!

There are countless studies and articles that proclaim the value in getting kids to do housework. I don't doubt it - and not only is it good for their development... sheesh! Duh - who wants to do all of the chores?? I would really like more time to make Savasana Socks!

I was vacuuming this morning and it occurred to me to assign chores by the days of the week. You know how there's #ThrowbackThursday on social media? What if there's More on the Floor Monday? You'd pick up anything on the floor that day! Now I have to think of the rest of them.
Maybe it's Trash Tuesday. So you'd get all the trash out of your rooms, backpacks... take out the trash!
What about Wednesday? Windows! And I have the perfect cloths and enough for both kids to tackle this project with just the cloth and water!
Thursday? Tabletops?
What about Friday?
Saturday?
Sunday is Sunday Fun Day for sure!

This post will evolve, it's a goal! If you have some ideas for my remaining days, please leave them in the comments.

You don't have to be cruel to be kind.

While Autism rates are climbing, there are still many who have not had a whole lot of interaction with people in this community. It is a spectrum, for sure. One thing to remember is that a BIG piece of the Autistic mind lies in social misunderstanding. Autistics can miss so many social cues... but you know what? Their loved ones don't.

So, if you befriend someone on the spectrum, get ready to be honest. I mean HONEST. Because sometimes they will love you too much. Sometimes, they won't love you enough. They may say things that don't come out the way they intend, and sound really funny or maybe really hurtful. Sometimes language skills are not on par with yours.

Your friend may not smell good all of the time. Showering may not be important to them. They may not take care of their hair the way you wish they would. They may not know how, or it may feel painful to them to manage it. They may not have much fashion sense. Maybe you don't like the things they are still fascinated by. Let me just tell you here, that your feelings are OK. People change.

Here's the thing: you can be a HUGE help. If this is your peer and that person really admires you, take some time and tell and/or show them what it takes to get that gorgeous hair. If they don't smell so good, you can say so. A good friend would. You don't have to be mean, but you could ask "did you remember to use deodorant today?" If the friend says they forgot, you might say "I like when you remember to use deodorant, you always smell great when you do!"

Let me tell you what doesn't help. Ignoring doesn't help. Vanishing from their side without any explanation doesn't help. I get wanting to run away. I get not wanting to say things that might hurt someone else. But guess what? Your friend may not ever realize you need a break, or even that something is wrong and if they do, they may not be able to accept it without your help. Many Autistics focus with high intensity on an incredibly limited number of things. It is hard to be in that spotlight all of the time. If you are, realize that you are likely on a pedestal. You can do no wrong, even if the way you are treating your friend really isn't right. Other people may even try to point out that what you are doing probably means an end to the relationship, but that information will hit a brick wall.

This post is solely about my experience. It is written with a lot of love. Not all experiences will be like mine. So if you are Autistic and reading this and NONE of this describes you, I understand. Your friends will never need this insight, but others will. I hope this is helpful.

Lucy's Locket

This is a true story... mostly. 
As I peer through the glass of the present into the past, the vision has a lovely haze that softens the view into something so perfectly Rockwell... and I'm just fine with that. As for the ending, well, the ending hasn't happened yet. So in this space, it can be as I dream it. Enjoy.

A single, little stool in front of the glass counter swings from side-to-side as the wispy blonde of four upon it twists her center of gravity to and fro. Her eyes are on a thing of beauty beneath the glass: shining gold. An oval - she'd just learned the name of that shape and she loved it! Pretty swirly things all around the edges. Her dad had said that they were looking for a necklace for her mom and this... locket. He called it a locket as he spoke to the man behind the counter. When she'd pointed to it, he said he thought she'd found the perfect Christmas gift for her mom.

They were going to put her name on it. Right in the middle of all of those pretty, swirly things, it would say "Lucy." How long would it take? The grown-ups blurry words drift through her mind as she studies the shiny chain and thinks with excitement about giving it to her mom.

The ride home is about how to keep a secret. No Telling until Christmas. The year had been a difficult one for mom. Little brother's arrival had not been easy. Mom had gotten sick, and had to stay in the hospital, even though the baby had come home. She'd had to stay at grandma and grandpa's longer. She got to see her brother one day - just long enough to hold him and dad to take a picture —then Other Grandma took the baby back and it was up the road again — back to grandma and grandpa's.

She'd watch daddy come to grandma and grandpa's every morning: up the dirt road on the tractor. She loved grandma, but she missed home. She missed mom, and she was ready to be a big sister! Hadn't she waited long enough for that baby to come out? It seemed forever, but the day did come, and the family was all together.

Mommy was sad for awhile. She was tired. She'd been sick. Daddy thought she should have something extra nice for Christmas. Daddy said the locket was just the thing.

And it was.

Mom loved her present! Loved her husband and kids. Mom placed a picture of her girl on one side of the locket, and her new son on the other side.

As the years went by, the wispy blonde took notice, every time mom wore the locket. It was most striking in the winter, when she wore it over her sweaters. Beautiful mom, all ready to go to the big family Christmas, put on the locket to complete her look. Her daughter thought she was her loveliest every year at this time: walking into grandma's all dressed up and carrying her dish to pass. Of the grown-up women, she has the prettiest voice, the best laugh. Hand the baby cousins to mom when they cry and they settle down every time.

### 

The locket is in mom's jewelry box. She doesn't wear it anymore. The chain is broken. Time has faded it. The family has grown. The children have children. Seven of them! 

Her hair isn't so blonde, and she isn't so wispy. His hair is gray, and he isn't as tall. Yet once again, here they are, dad and daughter, conspiring to allow a delicate, golden clasp attempt to contain all of their love and appreciation for the woman who'd given them each other. The idea was perfect, and weird... and somehow that made it more perfect.

They'd have the chain repaired for Christmas. She'd know they were doing that. What she wouldn't know was that birthstones would light the new chain. Eight of them: four on each side of the locket. It worked out perfectly, as some of the family share birth months, so too they could share a stone. Just as this new generation of children had brought new color and life to the world, an array of color to light the way to the locket, and the beginning of it all.

Mom loved her present! The locket once again had it's place around her holiday neckline. Just as before, it's the perfect accent to her sweaters, and to her. 

###

Ten days before Christmas, they venture out on the coldest day of the month so far. He has the locket in his pocket. They haven't had much time together. Her work is keeping her busy, and the kids... wow! The kids are in everything and the car is racking up miles in record time. He's retired, to some degree. His son owns the farm now. The four youngest grandchildren are in and out of the house and barn regularly. The youngest of the four is a wispy blonde: middle name Lucille. 

It's not such a task as adding eight stones. Today, just one, smaller stone is needed. There are January great-grandbabies to be accounted for. The locket has been worn recently, and rests in a prominent place on the dresser. It must be returned, or mom would be on to her husband and daughter. 

Off to the jewelers, and to lunch. She has to work until 2, there is time. We'll have fun, and get some things done! One last stop at the store, and home we will go - victorious! 

Mom finds them in the candy aisle. Guess who got out of work early? Oh dear! We're getting dog food, mom, see you at home! 

Oh dad, we have to check out fast and get the necklace back on her dresser! She'll figure it out! Straight to the checkout they go. Of all the times to run into the neighbors... who have realized they've rung up quite a bill! The neighbors decide to apply for a credit card to save 10% and as dad and daughter wait under a facade of patience while exchanging incredulous glances, mom speeds through the checkout aisle right beside them. Ooooh the goose may be cooked!

Finally, the transaction is complete and they are headed home! Surely, they cannot beat her there, but OH!! She stopped at a drive-thru for a cup of coffee. Daughter wonders if mom is just giving them time to complete their mission. She knows... darn it! She always knows! You cannot trick her, and you — a grown woman — are still a horrible liar. Dad's not so concerned. She may have an idea what we are up to, but she doesn't know what we've done. 

The necklace is back in it's place. The new gem will be added when the perfect opportunity presents itself. The family timeline happening along mom's neckline remains beautifully current.

###

More stones are added as the years come and go. More great-grand babies, more color along the chain. With every child comes another mission of love for dad and daughter. Lucy's locket brought more joy and love with every cycle of it's being stolen, enhanced, and gifted anew.

The youngest granddaughter is now a lovely woman in her own right. Beautiful, independent and spirited with a sense of mirth and mischief that brings so much life and laughter into her grandmother's world; she sits beside Lucy and hears the tale of the locket. They laugh over the adventures of dad and daughter, whom every time thought they had pulled the wool over mother's eyes, but she always had a sense of their plotting. They really weren't very good liars at all, neither of them. 

The time has come, Lu. The mission is now ours. Let's go to the jewelers. 

They go and give their instructions. 

They return to collect three boxes. This Christmas, it's their turn to bring the element of surprise to the family affair. 

The daughter opens one of the boxes. A bracelet? With the stones - the stones of her family. The son watches his wife open her box. A bracelet, with the stones, all the stones of their family. 

The locket, you ask? Why, it has a new chain, and a new neckline to dazzle. Lively Lu carries the childhood pictures of her aunt and her dad. Her sparkling eyes reflect the glow from her grandma's face. 

Grandpa sends the littlest of the littles with a small box for grandma. Her slightly bewildered look is well worth the price of the bracelet inside...

Checking the Grip

Have Faith in the Plan.
One must always have faith in the plan, even when the plan seems askew, or illogical.

People have a tendency to cling tightly to their plans. The internal compass points North, and we endeavor to remain trained on that mark. We hold fast to the direction, and in this day and age, seem duty bound to speed to our destinations.

Why?

What is the hurry?

Is it because the only way we are going to find real rest, true peace, is to lay lifeless in a box?
I actually do think that sometimes. No kidding, when I die, FINALLY... there will be no more rounds of kitchen cleaning, no more endless laundry. Why did I ever think...?

I didn't.

When I became a wife and mother, I did not picture that my life would be an infinite cycle of dishes and laundry. I didn't know "Mother" equals "Servant." I didn't know that when you possess the only mature vagina in a household, you are expected to do everything no one else wants to... because it is important they get their requisite television viewing and vegging out time.

I didn't know being a wife and mother meant being a dumpster.

My true North still exists, and this... loop... I am in, just isn't it.

Photo Credit: Becky Ivett (Beautiful Life Images)

I've been thinking today about Holding the Reins. Like riding a horse, or steering anything with two hands, really. You can relax your grip without letting go of the direction, right? When you relax, you are called to trust more. Relaxing allows for the possibility of the path changing. It means you may see things you wouldn't have otherwise.

However, if you drop a rein, you may spend a bit of time going in circles.

Like, endless loops...

Time to Punch Out and be Mom

The moment when your allergy-suffering kid, enwreathed in used tissues, gazes up at you with hound dog eyes and says, "cuddle with me, mama. I think I just blew my brains out."

There's This Kid I Know...

He is five years old. His name is Brett and this past December, he was diagnosed with AML-FLT3. I have learned a lot about those six letters and that nasty little number in the past few months. If you don't happen to be in the loop, they stand for a really wicked form of leukemia that requires multiple rounds of chemotherapy and a bone marrow transplant to stand a chance of recovering.

It is a scary, scary journey. This little boy and his family have endured so much in the past six months. His mom is my friend, and she amazes me with her seemingly endless energy and ability to fight, nurse, love and still parent ALL of her three children! Her husband is withstanding all of this quite remarkably too - they are a strong family. You can find out more (and aid their fight!) by visiting their website: http://brettsbunch.wix.com/brettsbunch

Sandy called today to fill me on on another family's battle. She is very worried about another little boy, who was also an AML patient and is now a survivor! However, today that 11-year-old child suffered a stroke. I'm sure you can imagine, as I do, that his body is probably quite worn after such an intense battle with cancer.

Brett is recovering from a bone marrow transplant currently. He is doing well! But there is concern in our hearts for this other family and this other boy who is now fighting to recover in a new way.

Oddly, it is not fear I feel, but gratitude.

Not for this child (or any child's!) suffering. No. I wish that never happened.

I feel gratitude for open eyes - my own, first and foremost.

Tunnel vision happens. We get bogged down in our own lives, and think we do not have time or energy to help anyone else. You see charity organizations begging for time and finances on television or in your digital travels and think you are too stretched to help or your efforts will be wasted by some corrupt organization, and you pass it by. We all do it, and we as individuals cannot support all of the myriad causes there are to support!

But there is always something that can be done, and there is always something YOU can do.

For me, it's blood donation. Since Brett got sick, I've gone every 56 days to Roswell Park to direct blood donations to my favorite little superhero. Doing this, I've found, benefits me just as much as it (hopefully!) benefits Brett! I take better care of myself. I drink more water. I take a daily vitamin that I just could not remember to take with any sort of regularity before this child got sick. Now, I am like clockwork. My whole reason for doing this is to make REALLY good blood for Brett!

I've decided, even when Brett doesn't need my blood anymore, someone else will. I will keep on being a blood donor. Because now I know there are always families out there with a kid waging war on an enemy within. There is always a parent trying to be brave while hoping and praying for a miracle. There is always a community in the shadows with their hearts open and their energies directed at clearing the way for the miracle they deeply believe will happen for their intended.

Closing our eyes to these circumstances doesn't make them any less real. Looking back, I think I've partly shut them out because I was afraid of the fear and the pain of joining what on the surface may look like a losing battle. What I've learned is, when it is your friend, your community… the fear and pain in NOT acting is far more intense! I have to wait 56 days between blood donations. 56 days feels like an eternity! I have even tried to convince the donor center I am strong enough to do it more often (that doesn't work, just FYI).

Acting, giving, DOING creates hope, power and love! Don't get me wrong, tears are created too. Lots of them, and some are fear tears. But some are tears of amazement, and overwhelming pride when you see others acting, doing and helping to support your cause in amazing ways.

Not all of us are created to dash into burning buildings and save trapped babies, but ALL OF US have the ability to reach out in some capacity. It's not about having the time or not having the time, it is about having the choice to Make the Time.

A Little Bit Autistic

We're planning our first ever family vacation. It's coming up so fast! We'll be on our way to Florida before we know it. We've planned it in a rush, because some people just don't do well with waiting and planning for things. As such, like all things that happen in a rush, issues are coming up that we may end up paying for months after this little adventure has concluded.

This isn't really my style at all. I am a planner. I try not to do things I do not KNOW with all certainty I have the time, energy and resources to take on.

It could be said, I am wholly lacking in spontenaity. I wouldn't be offended.

SO, as these things crop up, the hair on the back of my neck is also beginning to appear as vertical to their follicles. I've been told by several to chill out. Relax... it's a once in a lifetime thing... and for one of my children, it might be the only good thing they ever experience in their lives, so I should just do everything I can to make the most of it.

Yah, did you get that? I believe the quote was:

"She's not going to have much to look forward to in her life."

or maybe it was

"She's not going to have a very happy life."

I have to remember that it is the words I hate, not the person who said them.

High-fiving a friend for a job well done!

Meanwhile, the person whose life is apparently already over in some minds, is making some really big gains in mine. She has not identified with the Autism diagnosis in the past, because others she knows to be Autistic are more severely affected than her. It makes sense, really. If you don't act like the people you are told are Autistic, how can you BE Autistic yourself?

I haven't pushed this. It's more important she knows WHO she is than what others classify her to be.

It would seem that she is starting to understand the spectrum that is Autism. I've talked to her about Temple Grandin, and we've even connected to a young woman on the spectrum who is beginning her career as an ABA therapist! There are SO many positive role models who are also Autistic!

Last night at bedtime, she asked me about Autism. She asked me what causes it, and then "am I a little bit Autistic, mom?"

I was honest.

She said "I don't want to be Autistic! This is just... ridiculous."

Hmmm... yep, it does feel ridiculous sometimes. Why my baby? Why my friends' children. WHY anyone? Ouch. It's scary. The future is scary, because there are so many more unknowns than for most mainstream children.

But you know, I didn't tell her she wasn't going to have a very happy life. I didn't tell her she had nothing to look forward to. I told her she is amazing. I told her I love her. I said "you have already done so much more than anyone thought you could do! You grow and surprise us all of the time, and you will never stop growing and surprising us. You can do anything you want to do. Remember this honey, you may be different, but that doesn't mean you matter less."

You see, as her mother, it is impossible for me to believe her future is bleak. I did not bring this child into the world to suffer. I'll be damned if she will not thrive. Hopeless talk hits me like a rock in my chest at first, and then (pardon the language) it just pisses me off. Her life is far from over. She is headed ever upwards and I WILL do everything I can to make that statement ring true over and over, year after year, until the time comes when I am not physically here to do so AND THEN I intend to use whatever earthbound energy God sees fit to give me to sit on the shoulder of my children (because there is one not on the spectrum who I feel just as strongly for) and continue to whisper "you can, you Can, you CAN, YOU CAN, YOU WILL!!!" in their ears every single day until they draw their last earthly breaths and our spirits are finally rejoined in the ether of time and space.

Over the years, her teachers and therapists and I (and of course, my Little Miss) have worked together and found key after key and unlocked door after door and brought this child further and further out of her cocoon and into the light of being. The keys are coming slower these days, but they do still come. If you want to focus on tragedy and lost potential, I guess that is your choice, but I see miracles. I see potential. I see wide open space in which ANYTHING is possible - things we can't even imagine!

DO NOT pity us. DO NOT PITY MY CHILD. By being unbound by the constraints of mainstream society, her potential becomes BOUNDLESS. I'd advise you to take a big, deep breath; sit back; and prepare to be completely astounded.

What Might Have Been (and wasn't!)

I feel compelled to just blurt out somewhere in type all of the things that didn't happen this past weekend. Depending on your perspective, it was both eventful and uneventful at the same time. I am very thankful for both the events and near-misses that have me seriously wiping sweat from my brow and lifting my eyes to the heavens and whispering my thanks quite often even still. Maybe I should just get right down to it. I do still have to clock in and get some work done today; maybe emptying my head of all of this will help move that intention forward.

Here is what didn't happen:

Angel prevents fire, then reveals herself in a dream

• We didn't have a house fire (almost, but thankfully, nope!)
• We weren't stranded in town with both keys and phone locked in car (for long, anyway)
• We didn't have to cancel any play dates
• We didn't have to not share pie with loved ones
• We ceased to have to fight about whose turn it is with the iPad
• We didn't have to cancel a special ladies day I planned two weeks ago

Here's what happened:

• My quilt rack in the bathroom caught fire
• I locked my keys and phone in my car while grocery shopping
• We hosted two play dates
• We baked and shared a homemade blackberry pie with my brother, dad and a handful of nieces and nephews
• I had a wonderful chat with an angel (in my dreams, but aren't dreams the very best place to find inspiration and enlightenment?)
• The iPad fell into a coma (issue remains unresolved, the only "Hanging Chad" of the weekend)
• We had a lovely little breakfast, just mom and the kids, at Bob Evans
• I made it to the Trillium Lodge for Sip 'N Paint with my mom and sister

Here are some take aways:

• New house rule: If someone lights candles in  your home, that person should be personally responsible for making sure they are all extinguished. When you are so fried you compel someone to draw a bath and light your candles for you... you are in no shape for taking responsibility for extinguishing them - really, you are not
• It might be a good idea to give your nearest neighbor a spare key to your car (my nearest neighbor gave birth to me, this seems a wise move)
• At the ages of 8 (and up I hope!), play dates amidst chaos do not seem to add more chaos, and even seem to reduce chaos at times
• iPads need Otterboxes
• When sharing pie with loved ones, bake two pies... because life is always better with more pie!
• Sip 'n Paint... as much as humanly possible.

  

  Sip 'n Paint Friends - can't wait to do this again!

Three Things Learned While Walking

He doesn't usually wear decorations on walks

I started a regular walking regimen this January. Living in Western New York, starting an outdoor walking routine in January may seem a little nuts, but I figured if I kept it up through all of the wind and snow, it would be a habit that sticks for sure! I walked some last spring and summer, but often let work obligations (both real and self-created), children and house tasks deter me from taking the time outside I wanted for myself. After a full three-months of this routine, I'm fairly certain (though the family puts a monkey wrench in it quite quickly!) it will stick and I hope to keep walking. My faithful companion, Storm, is always so sad when we don't go... who could resist?

Best part of walking with kids? Great photo ops!

The kids went with me last year quite a bit. Though I found out later they didn't always think that was a good thing. Said one, "I hate walking with you! You go too fast, and my butt shakes when we get home!" So there may have to be some compensatory measures to keep everyone (semi) happy.

Today, I am pleased to say, Storm and I walked almost two miles. The weather is finally great, and the only thing that made me come inside (other than the need to get to work) was the death of my iPhone battery just as I was about to take the greatest picture for this post! I will charge the phone and get it tomorrow. In the mean time, here are three things I've learned on my walk.

I walk three miles an hour. 
   Just a fun factoid my Log Your Run App taught me, since I haven't used it since last year, I wasn't aware. It amuses me to think, I could make it to our nearest college town while the kids are at school, but someone would need to drive me back in order to beat them home!

My favorite dirt seasonal dirt road looks great!
   It is ready to walk on, thanks in no small part I am sure to our fantastic highway supervisor! Yippee! I'm headed in a different direction (and up a good hill!) tomorrow.

I have an itty-bitty-widdle waterfall
   That's when the phone died. Sorry! It's so cute! I will get the shot for sure!