Category Archives: Special Needs

.. decades of work..

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 …

Self …

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.

Heroes

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.

…storms in life..

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?

Marinade…

I love to make my own homemade soaps and scrubs… but sometimes?

Sometimes the writer in me comes out.. and my imagination gets the best of me..

… rosemary… thyme.. holy basil… lime…

… wild orange peel…

.. ALL in a coconut oil base…

Let’s face it.. it’s practically a marinade…

If Earth is invaded by predators or aliens? Would they think that I’ve already been marinaded in advance?

Will their mouths water at the smell of the Rosemary and thyme?

…will the Holy Basil be enough to keep me safe if they are demonic invaders?

Ha… as I stir the sugar scrub I’m sending to my daughter? I could write a whole book on whether I’m saving her .. or preparing her marinade!!

But really this isn’t unlike any other parenting question…

I often wonder if I’ve given my daughter the tools to be confident and stand out..

.. does she have the confidence and understanding to avoid predators in her life?

… does my son have the discipline and coping mechanisms to succeed in a workplace?

… Did we teach enough skills to let his light shine brighter than the Autism?

… did I fill my daughter full of enough empowerment.. that she knows she is more than her pretty face and her waistline?

Sometimes I worry that I didn’t put enough Holy Basil in their marinade…

But then?

Then I see their smile.. I see them laugh..

I see them confidently go into the world to meet their alien invaders…

.. and I know it’s enough for now..

.. and I’ll be here if they fall.. to help them up..

Ha… then add another ingredient into their marinade before sending them back into the world…

No one ever tells you how dangerous parenting can be…

Sowing seeds

My brother sent me a picture of the pumpkins he is growing in his yard. The pumpkins he had not meant to plant.

You see…?

Last Halloween’s pumpkins….?

Last fall, he was too busy to throw away the jack o lanterns.

Ok.. ok.. his actual words were that he was “too lazy”… but how many of us don’t get too busy and feel too tired to do the small things..

We all get lazy..

Looking at his pumpkins, made me remember that we had planted some in our garden.

Planted on purpose ..

..but then left to defend themselves.

As I walked through the garden… I was surprised by how well the plants had blossomed. How big our harvest was going to be.. with no actual work on our part beyond the sowing of the seeds.

Those pumpkins took the seeds we gave them.. and didn’t just sprout.. and blossom.. they grew into beautiful fruit..

They took the space we gave them and spread their leaves … made a place in this world.. some even grew despite sickly plants and bad soil..

We all sow seeds in our lives..

Some we spread on purpose… our help.. our time.. our smiles.. a listening ear..

.. but we also spread seeds on accident..

Yesterday.. I was researching a concern I have about my son…. when I felt a soft object hit my face. A balled up napkin. Looking up, my son smiled at me and said, “There you are.. you’re being too busy.”

I laughed.. and put my phone down. My son may have a disability (in the eyes of the world) .. but he is pretty smart.

We are all so busy with worries, and tasks… working … and taking care of our responsibilities…

..but the seed I was sowing in that moment was.. I’m too busy.. you aren’t as important as my phone…

Those are not the seeds I want to sow.. and most of the time they aren’t.. but accidentally?

Accidentally we sow seeds everyday.

The question is what kind of seeds.

This keeps me up at night…

I want to change the world.. I want to make it a beautiful place for kids.. a better place..

I listen to kids.. correct them when they are wrong… justify their emotions.. empower them to change their own world..

…but what about the kids I can’t reach.

What about when I am too busy to slow down and listen?

Last night I walked around a football game with my son. The night was supposed to be about him (for me).. Last year’s homecoming king crowning THIS year’s homecoming king.

And it was about my son.

So many people stopped to shake his hand. So many people greeted him. Asked him how he was doing. This boy with a disability… showing the ability to touch so many lives. It is such a beautiful thing.

But what surprised me?

What surprised me were the kids that were excited to see ME. Many of the students from the school I worked at last year.. shouted across a crowd to get my attention. Some rushed to hug me, before rushing off with their friends.. A few gave timid waves before moving on.

Those students are just like the pumpkin blossoms that I find in my garden. So beautiful.. so open to the world.. so ready to grow into their full potential..

What we give them … as parents.. as family.. as a community?

What we give them makes a difference in how well they grow.. what they grow into…

Will they be small but mighty… will they hide behind bigger plants… shy but powerful in smaller groups.. Will they be big? Will they search for a bigger world? Will they grow despite bad soil and sickly plants?

Or will they stay small and sickly on a vine.. forgotten..

After so many hugs, from so many students last night? I realized I had sowed some good seeds. Even some on accident … to kids I hadn’t realized I had affected.

For me..? I worry…

Is it enough..?

What about the young man who timidly waved and then walked on? What about the young lady who stayed back from the group talking to me?

Did I sow bad seeds on accident …?

…or …

…did I not sow enough seeds on purpose?

This morning I looked down at that pumpkin blossom … worrying about those other students..

… and I realized those blossoms looked like starfish…

The story of starfish has been told to me so often.. Starfish that get stranded on the beach with high tides.. People who doubt they can make a difference because they KNOW they can’t rescue ALL of the starfish.. because they KNOW there are too many…

The story of how one rescuer smiles as they toss a starfish safely back into the waters.. “I made a difference to that one.”

Standing up out of that dirt.. I smiled.

As I looked around, I could see the good I have done… and realized I can’t let myself get distracted by worries.. I need to put those worries away.. and keep sowing good seeds…

…because those pumpkins.. those starfish.. are very important to me …

..among the weeds…

We planted a garden this summer.. the way we usually do.. Planned which vegetables we wanted to plant.. the way we usually do. And then my husband installed the irrigation system.. the way he always does..

… and then life happened…

This time of year usually finds me knee deep in green beans and surrounded by quart jars of dill pickles..

.. but life happened this summer… and we have neither..

With graduation events.. family trips planned… and family emergencies that weren’t… laughter and camping that were scheduled into our plans… finding a sick kitten in the driveway tube that wasn’t.. lawn mowers that wouldn’t start…  to-do lists that wouldn’t end…

img_0462

… with no rain… high temperatures… and no extra time to weed and pamper the vegetable plants…?? The garden didn’t do well… and by the time we remembered to check on it.. the weeds were high and it was definitely too late to replant…

Wandering through the weeds today, I noticed a couple plants had survived.

One was the reliable zucchini plant. It’s not very exciting but we are really good at growing zucchini in our garden.

More exciting to me.. there were quite a few tomato plants. I always enjoy tomatoes.. especially the little cherry sized ones. NOT to mention fried green tomatoes…

img_0790 YES.. the tomatoes were a good find.

As I pulled back some weeds to give these plants some room to grow.. I stumbled across a couple cucumber plants. Struggling to survive without sunlight.. choked out by the tall weeds.. but still alive.

Excited to see so much surviving in this overgrown and neglected garden, I started pulling weeds with more energy.

As I knelt there in the dirt… I realized our lives are like my garden..

There are seasons where we will not have the energy or resources to water our talents or hobbies. We may not have the time to weed out our bad habits or negative thoughts..

And harvesting? That will have to wait.

When I first became a mom.. the only thing I paid attention to? Yup.. watering those baby plants. The other corners of my garden were virtually forgotten..

When my son was diagnosed with Autism.. and then a mood disorder… Yup.. the corners of my garden grew high with weeds again..

I didn’t water my friendships… I didn’t weed out my worries… I didn’t take time to read for fun.. or to write for enjoyment.. My adventure plants were nearly choked out…

…and my self care?

I don’t think that plant survived…

Doctors and friends often remind me that I never take enough time for myself.

You see?

My “zucchini plant”? My boring, stable.. always present … can’t kill talent?

Taking care of others..

And I do it really well… sometimes too well. So well.. at times.. that I over-volunteer.. I over-work myself.. over commit …

…under eat.. under sleep.. under relax ..

… and forget to leave enough energy to enjoy my interests…

My tomato plants…? My exciting adventure plants… my love to read and write… my love to play baseball in the backyard? .. to watch Jane Austen movies?

Those plants are surviving.. but they don’t have a lot of fruit on them.

And those cuke plants? Friendships and relationships?

Pulling back the weeds, I always find that they are still there. Ready to listen .. and to laugh. But I need to go looking for them more often.

Surprisingly… after the really long year ?

My garden is full of ALL KINDS of interesting things. I pulled out unique plants I have never seen before, beautiful weed flowers.. and huge pricker bushes.

I find that all kinds of beauty.. and ugliness can come from struggles in life. Doubts and bitterness… anger… fears… they can ALL take root in your garden. So can surprise friendships, new knowledge… new skills… blessings in unexpected forms.

While I walked my journey as a parent of a son with Autism.. I had doubts as to whether I could be a good parent.. I had anger that my son had to endure so much.. FEAR that we would never make it past each “phase”… fear that I would fail my son…

… but…

But I also found some amazing friendships among the flowers that walked with us… Paraprofessionals, special education directors, speech therapists, teachers… students in his classes… parents of his peers…

I developed a huge knowledge data base.. that I found could be applied to all kids..

I developed a vast amount of patience… that I didn’t know I had… Patience that I apply to every aspect of my life.

When a difficult season of life was over?

I found myself kneeling in the dirt… pulling weeds.. letting the sun shine on forgotten parts of my life.. finding friendships that I had neglected…

Today I pulled out those pricker bushes… all the fears and anger… Remembering how happy and thriving my kids are… I threw those fears in the pile with the doubts and exhaustion….

But… when my hand came across a weed flower? A friendship I hadn’t expected.. one I didn’t plant… and I certainly didn’t plan for?

I simply smile… and clear the plants surrounding it.

And today.. as I looked around my garden…? Among those weeds..?

I realized that some of my favorite things weren’t planned for…

.. thrive

img_0574As we traveled home from dropping my daughter off at her first apartment, we pulled off on a scenic overlook.

High on a hill overlooking the beautiful Lake Superior, the colors were vibrant.. the lake was calm… The whole area was stunning.

Everything was thriving.

Except one tree…

There in the middle of all the green trees.. in the midst of the green grass growing high… right next to one of the largest supplies of fresh water in the world… ??

Right there was a very brown, very dried up tree.. The brown was such a contrast to the greens around it, that you couldn’t help but notice it.

As I snapped a few pictures of it, I wondered what was eating at it. This tree couldn’t thrive in the most optimal environment.. so something had to be eating at it.

I enjoyed the view for another moment and then continued down the hill to the beach below.. img_0591

The lake was unusually calm.. and it was a beautiful place to take pictures..

As I tried to get artistic with a pile of rocks, my foot came to rest next to a stump in the sand. At first, I thought it was a rock and tried to move it… but it wouldn’t budge.

So I shifted my footing and snapped a picture of it.

A stump… from a tree… that had survived and grown on a sandy beach. No dark rich soil.. No minerals and nutrients… nothing to shelter it from the winds.

As I pushed on the stump again, I could feel how solidly the roots were planted still.

img_0676 Here was a tree who had lived in an environment full of difficulties and right next to a turbulent body of water.

And yet?

Yet.. this tree dug its roots down deep.. deep enough to hold on and thrive for a number of years.

Again my attention was drawn to the brown tree on the hill.

So often we are like these trees.

Some of us are planted in fertile soil.. in a beautiful environment… with so many blessings…

Yet?

And yet… we let things eat at us. Anger.. disappointment… something from our past that we feel like we can’t let go of… Something that has a deep hold on us..

But those things eat at our roots.. and steal the joy from our lives if we let them control us.

When we let those things go?

When we let them go.. they can’t control us anymore. And we can thrive…

I have met a number of people in my life… who are like the stump on the beach. Some of them were parents of kiddos with extreme special needs. Some were people with the most horrific childhoods.. Some survived diseases.. some survived without parents…

But… ?

But they ALL survived…

What stood out about these people?

They stood on the shores of those turbulent waves… they dug their roots down deep…

..and they survived…

In fact?

They didn’t JUST survive.. With smiles on their faces.. and counting their blessings … and reaching out to help others… They were thriving…

I snapped a couple more pictures and thought about my daughter that we just dropped off at college.. I thought about my son that stood there beside me… We have no idea what the future holds for either of them. We have no idea where the future will take either of them…

A smile came to my face as I whispered a prayer for them.

My prayer? … as I sat there in the sand?

My prayer for my kids is that they will thrive wherever they are planted …

… my smile?

My smile is because I believe they will…

.. our own luck..

Today is Friday the 13th .. one of the most superstitious days for some people…

As I sit here drinking my coffee, I started to wonder how many people are waiting for something bad to happen…

Not that I don’t believe in bad luck..

.. in the theater, we have a “tradition” where we have one performance where EVERY THING falls apart backstage. Costumes disappear.. buttons come off vests.. props break.. someone falls apart emotionally… the lemon/orange water springs a leak all over the floor…

.. every season it is the same..

.. we learned to expect that “bad luck” show..

.. and we laugh during the absurdity of it all…

So I can’t laugh at people who are superstitious.. and go into the “Friday the 13th’s” of this world.. prepared for the worst.

..in fact? Maybe it is foolish for me to go naively into the world .. ASSUMING that I will be able to handle any bad luck that comes my way.

Naively thinking that my Faith in God.. my faith in my family.. my faith in my friends.. and my faith in myself will get me through any luck that life throws at me..

But honestly?

The curve balls that life has thrown me aren’t things I ever would have expected.. let alone things that I could have prepared myself for..

yeah.. I’ve had an accident.. and a flat tire.. and some car issues.. and I even locked my keys in my car once..

.. but having a kid who has Autism?

I didn’t even know that was a possibility 19 years ago.

… having to have my son’s hips screwed back together?

I didn’t even know that was a thing.

.. having severe food intolerances be the cause of my kids health issues?

That only happened in movies.. right?

… a pack of raccoons wiping out my whole bird flock?

Ok.. I probably could have expected that one..

Recently my mom was in the hospital. It was pretty scary. The nurses needed to draw blood from her but they were finding it to be nearly impossible.

When another nurse came in to try to find a vein that would work..?

Well? Someone wished him luck..

Without looking up? He stated, “I make my own luck.”

And he was successful!!!

At the time, we were all simply grateful for his confidence.

But since that day?

Since that day, I have found that this simple statement is true.

We do make our own luck.

There is a saying out there..

Life isn’t about surviving the storm…

Life is about learning to dance in the rain..

I laughed when I saw it because this was how I approached raising a son with special needs…

… this was how I approached raising a very independent, strong willed daughter..

.. this is how I approach life…

I could let bad luck hold me back.. or I can focus on the good things that are still there..

Through everything? Through every tough situation I still have 2 beautiful children.. I have an amazing family… a Merciful God.. and some pretty spectacular friends..

… through everything we choose to laugh through the tears… sing through the frustrations .. and dance in the rain..

After all.. can it really be bad luck if we are all together? Or can we change those bad situations into good luck by finding the good around us? Can we change that bad luck to good luck simply by having Faith in ourselves and those around us?

So today?

Today I won’t worry about what bad luck this “Friday the 13th” has in store for me…

.. because I make my own luck…