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Autism, Life, Memories, Parenting, Special Needs, Writing

No…

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Growing up, we had a dishwasher.

For two girls who did the dishes for a family of nine? It was so cool..

…except …

Except for when my mom took it away.

Now.. I don’t remember the Reason why she took it away… exactly.. because, as is typical for young kids…?

I only remember the punishment.

And our punishment was to hand-wash dishes… until she was satisfied that we knew how.

We asked my mom to change her mind and let us use the dishwasher again..

..and she said “no.”

I remember promising to make sure every dish was clean before it got put away..

.. she smiled and said she knew I would .. because I would be hand-washing those dishes.

… the answer was still “no.”

So we hand-washed those dishes.

.. every day…

.. for … forever…

Then one Saturday? My mom left to go grocery shopping.. and I remember filling the dishwasher full of dirty dishes… and standing there impatiently willing it to run faster…

.. then as soon as it was finished running its cycle?

I hand dried all the dishes.. washing any that didn’t come clean.. drying out the dishwasher thoroughly… and even fanning it with a towel to cool it off..

When I was done? I was exhausted…

NOW?

Now, I know it would have been easier to just hand wash those dishes.

Sometimes, I think I haven’t learned that lesson still… That young girl showed me an important message..

…and I still don’t listen to what she is telling me.

Every day I pray .. I pray for my kids… I pray for their health.. I pray for their life… I pray for the plans they want or the plans we think will be good for them…

Basically, I am asking for God to give me the thing that we want on Earth.. if it’s according to His will…

Having a son with special abilities?

Most of the times, these aren’t selfish things..

Healing from one of my son’s surgeries, answers to autism puzzles… successful days at school…

.. an easy day every once in awhile…

… and similar prayers for my daughter… health and happiness .. and a little success on stage..

…but sometimes?

Sometimes, God says “no.”

Most of the time I accept that .. but occasionally I ask again.. wondering if I promise to be extra good.. if that will change the Almighty’s mind…

When the answer is still “no?”

Then I just keep on going down the path set before me… no matter how hard it is…

But I admit…

.. sometimes on a Saturday morning? I try to make “my plans” work and do it my way. I load that “dishwasher” full of good intentions and hard work.. and wait impatiently to see if it will finish working… before God returns and sees that I ignored His answers…

… but at the end of the day?

It’s exhausting!

.. and it would have been easier to hand-wash those dishes.

Today, I was standing in Barnes & Nobles talking about my books .. and I realized that I incorporated that lesson in my storylines …

.. I show Emma praying for the easy way out… praying to make everyone happy even if it isn’t what she wants… praying for loved ones to come home without the answers they need…

… and then praying for the strength to handle all the extra work and stress she causes herself…

.. I can write it into the pages for Emma … but I still struggle to write that lesson into the pages of my life..

Instead of doing the things God has laid before me.. in a slow patient fashion.. I continue wanting to do my things .. my way…

I guess I can learn a lot from 9 year old me…

What about you? What do you do when the answer is “no?”

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Autism, Life, Memories, Parenting, Special Needs, Writing

While we’re here..

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When I was a kid, trick or treating had some crazy traditions.

One neighbor made caramel apples for us.. but we had to come in for a visit. (Yes.. our mom was with us..)

Another stop gave full candy bars… but we had to tell a joke.

And yet another stop we had to tell a Bible verse.

Now after years of Sunday school and Vacation Bible school.. I knew a lot of verses.. but one that I loved to recite?

“Jesus wept.” John 11:35

I know it doesn’t sound amusing.. but for a kid? Finding the shortest Bible verse seemed like a challenge…

…and…?

I got the same big treat as my siblings who recites longer verses…

But as I grew up?

That verse came to mean a lot to my heart.

You see?

My superpower is feeling other people’s emotions…

…and well?

I cry.

…I cry a lot…

For most of my childhood and teenage years? This embarrassed me … and I fought to control those tears.

But this verse? Jesus wept. It echoed through my mind every time I teared up. I mean? If it was ok for Jesus… a grown man.. to cry in public because He was sad? If it was acceptable for the Son of God to weep openly… even though he knew that God had everything under control? Even though He KNEW that everything would work together and be beautiful … in its time?

If it was ok for Jesus to weep … even though He hadn’t lost faith in God?

Then maybe.. just maybe…?

It was OK for me to cry when I was overwhelmed.

A few weeks ago, a friend asked me to speak at her church on Mother’s Day (..ha.. I know.. it was more than a few weeks…) about my experience in parenting. How parenting a strong willed, independent sassy daughter and a son with autism (and a side of mood disorders) changed my life.

My first response was… I can’t do that… I’ll cry… in front of a whole congregation of people…

… just like Jesus did…

Then my second response… what would I talk about? How do you take 21 years of trials… errors… tears… laughter… and love… and condense it into 20 minutes?

The day I was to speak at the church was the day before my son was scheduled to start “college”. The day before we were to move my son into a dorm and he was to begin his road to independence.

Sooo… it seemed fitting to talk about how we had moved on from each disappointment… toward hope and a future. How we had taken each path we were on and looked for some good that we could do while we were there.

So I based my message on my other favorite verse…

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” ‭‭Jeremiah‬ ‭29:11‬ ‭NIV‬‬

In front of this church congregation… I talked about how I had great plans for my life… plans to change the world… and how those plans did not turn out the way I had thought they would.

In fact?

My life was nothing how I planned.

I love my life… but it is not the life I had planned for myself.

Parenting is always a challenge.. whether it is a sassy, independent, strong willed daughter…. or a son with anxiety, autism and a mood disorder.

And… well?

I had both.

Every time that my life’s path took a wide turn and took me away from the plans I had made for me and my small family? I would remind myself of this verse.. that God has a plan for me..

.. promising me hope and a future…

So I had accepted each set of changes…

..but first?

First… I had cried.

Tears to grieve for the death of the plans I had made. I cried out all the frustrations from knowing that I had to change yet again…

and then?

Then I had wiped my tears and looked around… and I’d say to myself.. “While we are here, what good can we do?”

While we are in this new place.. with new plans… what good can we do..?

And yes… I cried…

The day after Mother’s Day?

The day after I spoke about hope and a future?

We took our son to his college. We followed the plans he had made for himself.

The first day of his bright new future…

And….

He didn’t make it.

Four years of planning, and in the matter of 24 hours?

All of our plans for the next year changed.

My son and I…. ?

… we wept….

We wept for our broke dreams… his dreams of going to college and staying in a dorm…. my dreams of seeing him independent … and my dreams of being free to start a career.

We wept.

Not knowing which way to go… and having to explore different paths…? We both felt a little lost…

…but we wiped our tears… and said… while we are here what good can we do?

Over and over this summer? Our paths have changed…

Over and over this summer? We have cried…

But today?

Today… as I feel the sunshine on my face? Today as I see some confidence seep back into my son’s face?

I am reminded once again that God has promised my son a hope and a future…

I am reminded that God has promised ME a hope and a future…

He didn’t promise me the future that I dreamed up for myself… but He promised me it would prosper and not harm me…

Sooo….

Let me dry my tears one more time….

…and see what good we can do….

While we are here…..

Autism, Life, Memories, Parenting, Special Needs, Writing

..On the other side..

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I planned this weekend to be magical and full of memories ..

I reserved a campsite on the  northern shores of Lake Michigan.. planning weeks in advance. We were going to be able to watch the sun set over the great lake while sitting at our campfire… enjoying all of our favorite campfire foods… and just relax.

HA..

..well?

Let’s just say that it didn’t exactly go according to plan. 

When we arrived at our campground… so excited… the first thing we did?

..was drive through a massive cloud of Midge flies….

Midge flies…. 

I am a native of Michigan. I have been camping all of my life.. in all 4 seasons. And I had never experienced Midge flies. 

Well at least not… “clouds” of Midge flies. You see? The smoke puffs we thought we had seen on our drive in … along the beautiful Lake Michigan shore line? 

That wasn’t smoke. It was millions of tiny.. “Mosquito look alike” flies. 

As soon as we passed through the third cloud of bugs, we saw that the campground host had posted signs that the Midges were harmless and would only last 2 weeks.

BUT… that didn’t help us at all. Our reservations were for this weekend. 

They also offered to honor our reservations at a campground further inland… safe from the Midges. 

But further inland meant AWAY from the sounds of crashing waves… away from sunsets on the great lake.. 

Nope… inland was not in the “magical” plans.

The signs did say harmless... sooo….

We set up camp. 

My dad always told me, “What doesn’t kill us makes us stronger”.. and then he would laugh and say.. “But you’d be surprised what you can live through.”

We did NOT get a single bite from a Midge… but they love to fly into your eyes, nose, and mouth. They rested on anything solid.. in a cloud type coating. They landed in our drinks if they didn’t have covers, our food while we tried to cook.. and.. we finally resorted to covering our mouths so we could breathe (and talk). 

But when the Ranger came by to make sure we had seen the offer to move inland.. we were stubborn.

We stayed. 

We tried all the usual tricks.. citronella candles… all natural bug repellent… deep woods bug repellent … deep woods bug fogger… manually killing them by the hundreds… nothing helped. They filled our camper.. made a layer of little bug armies covering the tents and tables. 

They weren’t hurting us… but they were making us crazy. 

The first night was cloudy… hiding any magical sunsets.. and the Midges drove us inside … so NO magical campfire treats. We even ended up driving to town to eat in an environment free of things flying into our mouths. 

But our family was NOT without humor. “Because the Midges have decreed it…” or.. “the Midge cloud has disrupted the satellite connection..” … yes.. our family was still making memories through laughter during this vacation disaster. 

The second day was clear… so we trekked up and over the very  small hill that separated our campsite full of midges from the beautiful beach on the other side. 

And on the other side? 

..yup… 

….more midges.

In fact… climbing over that small hill..? We encountered more Midges than ever. Thick clouds of them that we charged through with our mouths covered and our eyes closed. We learned not to bump the pine trees… their nesting grounds.. 

…and then when we reached the beautiful sandy beach?

.. yup.. 

..more midges…

But… we could also see the beautiful glow of the sun going down over the great lake. We still had to keep the Midges from landing on us. But it was easier to laugh as we searched for skipping rocks… easier to ignore the flies when we were taking beautiful pictures. 

It was easier to enjoy ourselves.. despite the Midge flies… when we were being creative..

…and enjoying life….

I think that sometimes it is so easy to pack it in.. or to hide in our camper.. when life gives us Midge flies. And we were ALL tempted to do that this weekend. 

But if we had stayed safe inside the camper… or moved 2 miles away.. to make it easier.. 

..OR had we turned back when the Midge flies made it absolutely miserable to breathe… 

I would never have gotten to take these beautiful photos of my family… We wouldn’t have skipped rocks… and .. we wouldn’t have made some funny  but beautiful memories.. 

… and we will laugh about our Vacation with the Midges for years. 

This month was hard for our family.

Very hard…

The journey with Autism is neither clear nor is it easy. 

Parenting is hardly ever clear or easy..

But with Autism added in? 

… sometimes? 

Sometimes…  I wish I could hide my son away from the world.  Away from the disappointments.. away from the failed attempts that we all encounter.. away from the people who doubt that he will succeed… 

But if I kept my son… (or my daughter for that matter) … hidden away in the camper..?

Away from the flies of annoyance and frustration… and disappointment? Hidden from failed attempts at success?

If my family had stayed home this weekend to hide away from the flies of Autism, instead of going on the worst vacation spot in Michigan?

Then.. I would have 500 less pictures on my phone right now. And we wouldn’t have made all of these beautiful memories. 

So.. my family is gearing up to go over this next hill in the journey of Autism. We will travel it with family by our side.. and laughter in our hearts.

Because you notice the Midges less that way. 

 

 

Life, Parenting, self love, Special Needs, Writing

…balance..

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I once heard that regrets taste the worst when you drink them with coffee in the morning..

I always thought it referred to … I don’t know… someone else.

But lately..?

Lately, I have really struggled with taking time to write. It seems so selfish to take time out to download my brain when my to-do list is piling up.

.. but I feel like my “to-do” list just goes in circles..

… and I feel like I’m half checked out..

…overwhelmed by all the things I need to do.. that I SHOULD be doing…

… distracted by my thoughts all piling up in my head.

And then I’m further behind than when I started… so it would be even more selfish to take time NOW…

((Insert Deep Sigh Here))

This morning..?

This morning as I started to do my more chores… ??

The power went out..

Unexpectedly…

.. the power company was “assessing for causes”…

…meanwhile…

I could not do any of the things on my to do list…

Soo.. after I got my son (who is distressed by power outages.. and who does not like the phrase “estimated” or “unknown”..) distracted with mowing the lawn…

I took my coffee outside .. with my notebook..

… and no excuses…

… no guilt..

…and I wrote..

…and for the first time in a long time… I had no regrets with my coffee…

Recently, I read that being so Selfless that you don’t take care of your Self.. is one of the most Selfish things you can do..

The first time I read that I laughed.

After all, being selfless is exhausting .. and well…? … you give up any idea of pleasing yourself..

In its very nature, the idea of being “so Selfless that it’s Selfish” doesn’t make sense.

But this morning?

As I drank my coffee, and found myself at ease ?

I realize that giving up so much of yourself.. selflessly… that you have nothing left to share?

You start to feel your spark disappear.. your focus… your enthusiasm…

… it all disappears until there is nothing left to share…

THAT is selfish …

…and I dislike being selfish..

So my goal today is to find balance..

.. a balance between living a useful life… living a life that makes a difference to the world…

.. and living a life that is worth living…

A life without regrets.

How will you drink your coffee?

Life, Parenting, Writing

…still warm…

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Coffee in hand, I headed to my couch this morning.

The sun shone through the window and illuminated my favorite spot.

The pillow was still crinkled. The blanket was still rumpled.

In fact, it looked as if someone just got up from this spot.

It looked like it was still warm.

Instead of sitting on the couch? I sank onto the coffee table.

Too often in our lives… we take fore granted the people that sit on our couches. We expect to see our loved ones sitting in their favorite places.. forever..

.. because they are always there…

Earlier this week? A man in our community died suddenly.

One minute? He was where he always was. Running his boys to practices, helping out in the community where he was needed, calling his wife…

.. he was where he always was..

.. and now?

Now there is an empty couch cushion that is still crumpled. Like he just got up for a moment and walked from the room..

.. like he would be right back.

His spot in this world still warm.

For awhile that spot is going to feel so empty for his kids.. for his wife…

And not just the spot on the couch.

There will be an empty place in the bleachers.. an empty place in the church pew.. and empty place in the car for road trips.

.. so many empty spaces…

But the truth is?

This Dad’s presence was so strong in his family..

.. so strong in his community…

He left his presence so strong.. that those places are still warm.

And they will stay warm.

His time here was shorter than he would have wished. But he made good use of that time.

Once the pain and shock has worn off?

Once the grief starts to lessen .. a little?

We realize those empty places .. are not really empty at all. The spirit of our loved ones stay with us and occupy those seats still.

And if we keep the memories of their spirit alive?

Then the spaces will still be warm..

Autism, Life, Memories, Parenting, Special Needs, Writing

.. decades of work..

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My son turned 20 today.

My baby boy.

My little man with autism and a side of mood disorder…

..is 2 decades old.

When I look at him it seems like yesterday that I started researching digestive disorders while my family .. slept.

It seems like just yesterday that I read every book on parenting kids with Autism.. and every book on Childhood Bipolar.. Reading 4 inch books on the “science of the chemistry of the mind”.. while my friends read a funny romance.

It seems like yesterday when I questioned whether I was doing a good enough job … with tears running down my face.

And I can remember it clearly when Simon leaned his head on my shoulder and said “With God, all things are possible.”

How is it possible that this young man has come so far?

No longer a boy that is silent.

No longer a boy that hides his face in my shoulder.

No longer a boy who watches from the doorway.

Here stands a boy that walks confidently through doors. A boy that sings in front of a whole auditorium of people.

Here stands a boy who easily orders his own food at a restaurant.

Here is a boy .. who amazes me in every way.

Two decades of work have flown by…

… I can’t wait to see where the next 2 decades take him …

Life, Parenting, self love, Special Needs, Writing

Self …

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Last night.. a mom hurried onto the stage. It was late and she looked exhausted. But she took off her jacket and rolled up her sleeves and asked what she could do to help.

In that moment, I had a moment of clarity.

This mom was tired. She had just come from a commitment that involved small children .. and it was 8 pm. She really needed to go home and rest.

But yet?

She was ready to work to help the kids’ theatre stay on schedule …

Who was I to tell her to go home and take care of herself?

How could I tell her that when I can’t say ”no” to anything.

I can’t say “no”…

Anyone who knows me.. Knows that..

And when I get tired? Really, really tired?

.. my friends? They try to coach me ((once again)) on how to say “no”..

They tell me to spend some time on myself. To selfishly take care of myself for a few moment..

But that is not how I work.. I am the happiest when I am helping others.. when I am working towards making the world a better place for others..

..there are definitely days that are more full and more tired than others.. but I manage..

Even society tells us that good moms .. and especially moms with special needs kids.. need to be involved.. really involved..

AND .. every moment counts because they grow up so fast..

So I skip a calm moment for myself this time.. so that I can do one more task for someone else.

I skip all those moments for myself.. until I’m exhausted and my head is full of noises.

Julie noises..

.. wanting to write.. wanting to paint.. wanting to read.. desires to explore the world around me.. to create .. to write some more…

.. so many voices…

But there are things to be done.. responsible things..

Committees that ask for help.. chores that need to be done.. messes …

So I put my “noises” on the back burner.. and square my shoulders and head off to a meeting..

For holidays this year, I received 2 willow figurines as gifts.. I love Willow figurines and these both were beautiful as usual.

And they were to represent me..

The first .. Simple Joys.. represents my love to give things to others.. gifts of time, gifts of work, gifts of love.. all of the best of me..

This Simple Joy figurine? .. it very much represents the essence of me..

But the second?

The second was a gift from my daughter.. it is titled Shine..

Shine..

.. my daughter .. encouraging me to reach for my dreams.. to take time for myself..

..my daughter… the one I encouraged to always shine for herself.. now turning my words back to me..

.. giving me permission to think about my own needs…

But it feels so .. selfish.. to think of yourself ..

It seems selfish to take time away from making the world a better place.. take time away from helping others…

… just to write my thoughts down on paper…

Balance ..

Looking at these 2 figurines.. I realize I need balance…

Looking at the tired mom standing before me last night?

I realize we all need to find balance..

Balances between being selfless and being selfish..

… a balance somewhere between simple joys and shining…

.. the balance between the selfless and the selfish is where we will find our true self…

.. and then all that remains?

It’s to give ourselves permission to accept it.

Life, Parenting, Special Needs, Writing

Heroes

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Some people look at my son .. and see a disability.

They look at his face and his mannerisms.. and they see Autism Spectrum disorder!

When I look at my son?

I see a strong boy. I see love, compassion and a love for our world.

When I look at my son? I see my hero.

Here is a human being that has been dealing with extreme medical issues since he was 6 weeks old.

A boy that had to have casts to hold soft bones in place. Screws to hold soft joints in place. Medicine to allow stiff joints to move.

Here is a child who learned to read labels to avoid 30 of his favorite foods.. because he wanted to walk without pain.

Here is a young adult who is enduring countless treatments to heal a painful skin condition.

Here is a boy who has always been in pain.

And yet?

…yet he greets people with a smile. He never mentions his pain. He will walk on painful feet to cook for his sick mom. He sees beauty and art all around him…

.. and he sees his future as bright and exciting…

He is in constant pain…

And he sees his future as bright and exciting…

When I look at my son?

I see my hero!

And when I grow up? I hope to be just like him.

Life, Memories, Parenting, Writing

.. finished plans

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“.. and it is finished!”

20 years after I started.. I put the last photo in a frame and closed every painful prong..

Flipping it over, I let the memories flood over me as I studied each picture in my daughter’s collage..

Ok ..

It wasn’t really finished. I opened up those painful prongs one more time and straightened a couple pictures .. and… changed places of two..

.. but then it was finished..

When we started this project 20 years ago.. the plan was simple!

Choose 1 picture to represent every year of her life..

Add in her newborn picture and her graduation photo..

Waa Laa… Easy peasy plan… and Go!

At the time I made that plan? I’d only been a parent for a year.. with my second on the way.

BWAHAHAHA…

I had no idea what life had in store for me… how big my adventures with my kids would be.. NO idea how big my kids’ personalities would be..

I had NO idea how many pictures we would take each year..

After 5 years? … after only 5 years, the task of only picking 1 picture was too daunting.. and I did not chose that year.

The rule of no one else in the photos was quickly set aside.. and the rule against school photos.. gone..

The plan was to display this collage at my daughter’s graduation.. but it wasn’t finished ..

So the new plan was to finish it before the open house. I pulled 200 pictures to fill 20 slots..

Sooooo….?

So.. the new plan was to fill board after board with pictures that represented my daughter’s life… for the open house… then I’d finish the collage later…

..That was 2 years ago…

This morning I was supposed to be cleaning.. because we have a houseful of guests coming to celebrate the New Year with us!

..so naturally ..

I pulled that collage down and started pulling pictures to put in each year’s slot.

I started pulling one picture for each missing year.. but they didn’t fit the sized pictures I needed… they weren’t following the rules.. and it still wasn’t working the way I planned..

The more I sorted?

.. the more I realized…

Life doesn’t follow rules.. and it doesn’t take plans into consideration…

So instead.. ?

I started pulling the pictures that showed the light in her eyes .. the ones that emphasized her beautiful soul… and sense of humor..

.. and before I knew it… ?

It was finished..

Parenting is like that…

Parenting doesn’t follow rules.. and it doesn’t take plans into consideration…

We started out with ideas.. a road map.. an “easy peasy” plan for success..

.. and then we went off-roading.. so far off road that our parenting job could not be more different from what we thought..

But .. you know what??

I think it’s better than what we planned..

This life? …it is so beautiful…

I have a collage full of pictures to prove it..

Life, Parenting, Special Needs, Writing

…storms in life..

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img_2512Sometimes after a storm, I walk through my yard just to see what blew in. My favorite finds are nests. I find them fascinating!

So intricate.. so beautiful…

.. but when there are eggshells still in the nests.. I remember that what I find fascinating? It’s what’s left of a creature’s home.

This summer I found many nests blown down.. it was hot and dry.. and very windy here in Central Michigan..

.. but I also made a different find!! I found a nest in my Locust tree. High above my head.. on a solid branch.. a solid built nest. It wasn’t as delicate as some of the beautiful nests I had found .. and definitely NOT as pretty..

… and on the backside I found some creepy critters..

.. but it withstood storm after storm… In fact, I found myself checking in with it every day. Well.. at least until my life got busy again..

This morning, I sat and watch news footage of the hurricane destruction in Florida.

So sad.

Putting my phone away… I walked out to feed my chickens, and once again checked in on my nest.

As the wind whipped around me.. I looked up into that tree.. with its branches bending dramatically…

.. and in the middle of the storm.. this nest still held firm.

The tree has fewer leaves now.. and the ones remaining have changed colors.. the feathers have blown away.. and the sunlight isn’t as bright..

..but this nest is still there…

Most of us don’t experience storms like Hurricane Michael.. or Florence.. we don’t see storm surges and wind speeds over 100 mph… we don’t see our houses blown down ..  homes destroyed…

…but we all experience storms in life…

Parenting itself is a storm at times..

.. then add in special needs storms.. a new diagnosis… health issues.. emergency surgeries.. medicine changes.. family emergencies… conflicts in our world.. death of a loved one.. financial strain…

..yes…

…we all have storms..

I have had storms…

…many… many storms..

Today? As I stood there in the wind.. I thought about my nest…

.. my home.. my life…

Some people think that our nests are in a specific location.. some people think our homes need to be beautiful.. most people think our lives shouldn’t have creepy critters in them…

My nest isn’t a place … I have moved too many times…

My home isn’t perfectly beautiful.. we are too busy living life in it…

.. and the people in my life aren’t perfect .. but neither am I..

… but when a storm blows through my life? Will the life that I have built withstand the winds?

Or will I be blown out of that tree.. and into God’s lawn?

.. Will God pick my life up out of debris? Pick off a creepy critter… or two? Will God have to put me back in my tree? Will He move me to a safer tree? Will He put me right back into the storm?

I have fallen in storms…

I have broken down in tears…

I have asked God to put me a different tree…

I have asked Him to take away my storms…

… but I have weathered a lot of storms firmly rooted to my branch…

.. I have come through storms looking for rainbows on the other side…

.. I have formed bonds inside those storms…

… and found happiness.

I will always continue to look for ways to improve my life and make it more storm proof. … But I like the nest I have built…

So today..??

Today.. as the trees bend and twist in the wind… take a look at your nest and consider…

…how will you withstand the storm?