Josiah's Journey

Navigating life with a special needs child.

Josiah's Journey continues. However all previous posts and newly added ones have been moved to http://www.embracetheblessing.com/ Thank you for being a faithful follower of Josiah's Journey. Should you so desire, you may continue to follow his adventures at this new location.

Please be sure to scroll down to the bottom of a story and check this little box   New posts will automatically arrive to your inbox.  And if you wouldn't mind, please add a comment to let me know what you think of the new site. Looking forward to journeying with you as we continue to Embrace the blessing!





The instant I looked down at my phone I knew something was wrong.

I had missed 4 phone calls and 3 text messages, all in a very short window of time.

Josiah's teacher was trying to reach me.  So was my husband.

The voice message said, "We are having a few problems with Josiah today." 

I barely heard that.  

Instead I heard the frantic screams of my now teenage son, echoing in the background through the phone.

In moments like that, my world stops.

Almost immediately my eyes welled up with tears. 

My first call was to my husband, who was at work.

He had already been made aware of the situation and was asked to pick Josiah up from school. 

By the time he arrived, there were 10 adults in the classroom with Josiah.  

Josiah had been uncooperative for part of the day, was scratching, pulling hair, turning over desks and tables and throwing chairs in the classroom.

And, screaming.

Not typical behavior for a 7th grader.  Not typical behavior for Josiah either.  

For the most part, his Intermediate School experience this past year and a half has been rather uneventful in terms of inappropriate behavior.  

Not so much lately.

He seems to cycle between weeks of peaceful co-existence with the others in his life to a few days or a week of total chaos, every few months.  

During the out of control days, we struggle to understand it all.  We question everything.  We closely examine any and all potential 'triggers'.

Maybe he's tired.  (HA)  This is the boy who for years never needed much sleep.

Could he be sick?  Maybe he has a headache?  Sore throat?  Stomach ache?  Constipated?  Hungry?  Thirsty?  Needing to jump?  Needing deep pressure?  Needing time alone? Was there a Koosh ball anywhere near him?  (he used to be terrified of Koosh balls)  





And on it goes until ultimately Josiah comes out of whatever state he was in that was rocking everyone's world and settles down again.

Truly, it's like flipping a light switch.  One minute he's calm and cooperative.  The next he's wreaking havoc on his teachers and classmates.  And us. A few days later, he calms down again. 

Thankfully, the rough days aren't as common as the good days.

Many times we see our sweet Josiah shining through, smiling and happy and we know 'he's back'.  We know we can coast easy for a bit.

The challenge is in trying to figure it all out to hopefully prevent another storm.  

If only he could tell us.

If only he could explain what it is that ticks him off so much.  

If only he had words to express his frustration.

Life can't be easy when you have no words.

Heck, life isn't always easy when you do have words.  

But that's not the point.

This is.  Josiah can't tell us what's wrong.  

But we know the ONE who created him.  We know the ONE who knit him together in my womb.  We know the ONE who has a great plan and purpose for Josiah's life.  And that's how we get through it.

We pray.  

We pray over him before bed.  We pray for him at breakfast.  We pray before the bus pulls up.  We pray for him while he's at school.  We pray for his teachers and aides and bus drivers.  We pray for his caregivers.

We pray for wisdom.

And then we let it all go.  We have NO idea what God was thinking when he placed Josiah in our lives.  We're just very grateful he did.

He taught us to pray. 
Josiah has become quite the food enthusiast lately.

His willingness to try new and different foods truly astounds me.

What's even more amazing, he thoroughly enjoys most everything put in front of him.

A few weeks ago, he ate tripe.

I'm not kidding.  TRIPE.

He also recently devoured shrimp fried rice, cabbage, black eyed peas and 2 servings of fried catfish.

This kid who not so many years ago lived primarily on peanut butter and fluff sandwiches, oatmeal or pancakes no longer has such a discriminating palate.

I made a copycat version of The Cheesecake Factory's Kale and Quinoa Salad right before New Years.  It just happens to be my very favorite salad, one I could eat every single day.

I doubled the recipe.

My version,  a classic Pinterest fail, tasted nothing like theirs.

I was not impressed.

Josiah tasted it.  Even with red seedless grapes riddled throughout, he gobbled it up.

He almost never eats fruit, unless it's dried or dehydrated.

Yet, Josiah polished off the entire double batch.

He even ate it for breakfast.

Now we offer Josiah more options, just to see how far we can go with it.  Hence, the tripe.

So, when I whipped up a steaming bowl of 6 ingredient 6 minute tomato soup in our Vitamix blender last week, there was no doubt he would be a fan.

I couldn't have been more wrong.

One quick swipe of his arm across the table top sent the frothy bowl of red yummy goodness to the ground, splattering soup all over the kitchen floor.

Even without words, our little food critic sent his message loud and clear.

We'll keep the quinoa, black beans, tomatoes and kale coming.

But, we get it buddy.

For years Josiah was a picky eater.  He had a few favorite foods we rotated throughout his day to make up each meal.

His most favorite was peanut butter and fluff sandwiches.  Fluff, for those of you who are wondering, is marshmallow creme.

Every day at lunch, Josiah would devour peanut butter and fluff.  Some days he would eat 3 or 4 sandwiches.

He ate oatmeal for breakfast.  He ate oatmeal for dinner.

He drank only milk or water.

Eventually, he ventured out and tried some other foods which gradually were added to his diet.  

Pancakes became a favorite and replaced oatmeal in the morning. 

Occasionally, pancakes were dinner for Josiah too.

He discovered macaroni and cheese at one point and actually chose that over peanut butter and fluff some days.

Josiah would not eat fruit of any kind, except apple sauce, if that counts.

He refused vegetables completely.

He did love pudding however.  He got some nearly every day.  Oh and ice cream.  What kid doesn't love ice cream?

Wait, forgot about the eggs.  He adored scrambled eggs too.

So there you have it. Josiah's diet consisted of oatmeal, peanut butter and fluff sandwiches, pancakes, scrambled eggs, macaroni and cheese, apple sauce, pudding and ice cream, milk or water.  That's it.

For parents of children who self limit their food intake, this may seem like a vast assortment of choices.  

However, it got old rather quickly for us.  

Over the years, we tried introducing many new foods in various different ways to Josiah. 

He wanted nothing to do with any of it.

There was a time when Josiah was quite young that we took him to a D.A.N. physician (Defeat Autism Now), had many tests run and were given a very strict diet for him called the Specific Carbohydrate diet.

I couldn't tell you much about it now, other than this.  Everything Josiah consumed had to be fresh, made from scratch with organic ingredients.  

No cans, no boxes, no prepackaged anything. Even yogurt needed to be made from scratch. It was all very labor intensive. 

Josiah also needed to consume something like 14 different vitamin supplements per day in various forms. Some of it hidden in his food.

At the time, all 5 children were living at home.  We had only one income.  The supplements were extremely expensive.  The food was extremely expensive.  It took a very long time to prepare Josiah's meals.  In addition, there were 'normal' meals for the rest of the family.

It wasn't easy, but we gave it our best effort.  We were determined to do whatever it took to help our little guy.

Unfortunately, Josiah did not like the fresh fruit and vegetables now gracing his table.  He refused much of what was offered.  He got sick (an upper respiratory infection), ended up hospitalized for dehydration and lost quite a bit of weight.

When he was released from the hospital, we let that kid eat whatever he wanted.

So much for the Specific Carbohydrate Diet.  We were done with it.

Then, one day when Josiah went to the very first birthday party he was ever invited to (still chokes me up to know someone actually wanted Josiah at their child's party), he tried pizza.

He loved it.  He ate the whole piece.  Maybe even 2 pieces at that party. We couldn't believe it.

Last summer I stumbled upon a website with 'clean eating' recipes.   Clean eating means avoiding processed and refined food and basing your diet on whole foods, like lots of fruit and vegetables.

For my own dietary reasons, I began cooking many of the recipes.  On a whim, I offered some to Josiah.

He devoured them.  Almost daily, Josiah would welcome new tastes and textures.  It was astounding.  

In a very short time, Josiah was eating quinoa with black beans and grape tomatoes, broccoli, asparagus, spinach, cauliflower, Greek yogurt with blueberries or pomogranates, portobello mushrooms with tomatoes, avocado and broccoli salad, and zucchini to name just a few. 

I'm not sure why the sudden interest in new flavors.  I'm not sure what it was that Josiah liked about these new foods.  Could it be that he was just tired of the same old options, day in and day out for so many years?

Who knows?

When given the option at breakfast between just about anything else and broccoli.  Josiah now chooses broccoli every single time.  

He passes up the sweet tasting (processed, prepackaged) cereal bar that he loves, for broccoli.  And eats a second helping.

For the past 12 years we've never been quite sure how to celebrate Josiah's birthday.  

Would a busy, noisy party with people he really wouldn't pay attention to be best, or just a quiet celebration at home that didn't really feel much like a celebration without the noise and the people?  

In January, when Josiah turns 13, we've got it figured out.  Finally!

We will go to Jumping World for Josiah to bounce to his hearts content and serve up brimming bowls of broccoli.  

Quite honestly, I don't think anything would make the boy happier.


I remember hearing about children with a dual diagnosis of Down Syndrome and Autism a few years back.

Shortly after Josiah was diagnosed, I joined a List Serv to get a glimpse of what life would be like for us down the road.

It was comprised of a group of parents that had children with DS-ASD (Autism Spectrum Disorder).
Most of what they shared was daunting.

Josiah was 4 at the time.

I read horrifying stories of very destructive children, trashing houses and destroying furniture.

I read of aggressive children, hurting themselves and those around them.

Most of these kids were 6 and 7 years old.

I remember thinking, this will never happen to us.  Josiah is such a sweet boy.

He's very lovable and engaging.  He loves to snuggle.  He loves to crawl in your lap and give hugs.

I thought, these poor families just don't know how to handle their children.

And then, Josiah got older.

He started trashing our house.

It started small.  A couple of plates and bowls hurled to the ground, shattered to pieces.

A metal Kitchen trash can, dented from repeatedly being thrown.

Table lamps and knick knacks crashed and broken because Josiah thought it was fun to knock them into things, like ceramic tile floors.

And then he entered the declutter stage, the time in his life when Josiah figured out that just by sweeping his arm across any flat surface he could clear it quite quickly.  

He discovered our fireplace had a mantle. Though he was too small to reach it, he learned to throw things up at the beautiful items displayed there, much like a bean bag tossing game.  He was good at it too.

Josiah taught us, rather quickly, less is more.

We took away coffee tables and end tables. We removed lamps from the living room.  Our fireplace mantle was bare.

We started living a minimalist lifestyle and removed most everything from any flat surface.

I shared none of this on the List Serv because then I would be one of those parents who just didn't know how to handle their child.

Actually, I hadn't been on the List Serv for quite a long time.  I decided very shortly after joining, it was far better to learn as we go with Josiah as opposed to hearing from others what lies ahead.  

Going through life with blinders on seemed best.

Eventually Josiah developed a passion for our wooden Kitchen chairs and destroyed all 8 of them, many times over.  

Wood cracks and splinters easily when thrown to the ground.

It's only been recently that we've been able to put things out around the house again.  Josiah is now 12.

For 8 years we lived with the bare basics, not quite the 'model home' decor I'd love to create for our family.   

To be honest, I didn't have time to care for any of it anyway, chasing after Josiah, most often greatly sleep deprived.

So, for our family it worked.  We learned to live with the bare minimums.  And we've been happy.

Life is not about the abundance of stuff.  

However, furniture in the family room isn't overly indulgent is it?

Yesterday, Josiah, for no reason I can fathom, tore a piece of fabric off our bonded leather recliner. I guess it's not that big of a deal since part of the couch has been peeling for months.

This morning, I woke to chunks of stuffing ripped from the back of a couch cushion.  

This is what I would post on a List Serv should they still exist and should I be a member.  

Children with dual diagnosis of DS-ASD can be destructive.  Consider yourself warned.  This is what happened at our house:


Guess it's a good thing I'm not sharing that message with the world.  It's probably best for families to learn as they go as we prefer to do with Josiah.

The next major holiday when furniture sales are in full swing we are running out to buy some new stuff.  This should do the trick.


                Concrete furniture.

My guess is it will be a few years before Josiah has the strength to destroy this.