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.

Well what do you know?

After months of Josiah sleeping relatively well, we are back to partying til the wee hours of the morning.

This boy just does not sleep at night.

Seems no matter how tired and lethargic he may act during the day, once 8 pm hits, he comes to life.  

The sky gets dark, the world begins to settle down and Josiah revs up.

From that point on, it spirals out of control.

He starts out slowly, making vocalizations and bouncing on his knees all around the house.

And by about 1 in the morning he works himself up to a frenzy.  

His arms start shaking, his body begins to vibrate and he is in his own little world.

Last night he actually had both legs ramrod straight up in the air with both arms out at his side, head tilted back just shaking.  

Laughing, hysterically and shaking.

When Josiah gets that intense, it's best to keep your distance.

One never knows what will happen next.

If we could just create a boundary line around his room maybe with some bright colored duct tape and teach him to stay 'in the zone' when he's out of control, it would help tremendously.

If we had borderlines that he knew he just could not cross, I'd place one at the entrance to the kitchen and another at the entrance to our bedroom.

It would probably take weeks of training to shape his behavior, to teach him 'Do Not Cross the Yellow Line' but it would be worth it.

It's just not safe to have the boy roaming around the house in a frenzied state especially if the rest of the household happens to be sleeping and hasn't clued in yet that he's up and about.

Hard to imagine we could ever sleep through the noises and the commotion he so enjoys sometimes, but we've learned to do just that.

Most often however, Rick and I tag team through Josiah's sleepless nights.  

We take shifts and try our best to calm him and help him fall asleep.

He seems to do much better with Rick than with me.

For some reason, Josiah becomes a Sumo Wrestler when I enter his room.  The last few nights, he's been in attack mode.  

He dives on top of me, lunges for my hair and has even scratched my face and neck while laughing hysterically as if he's enjoying the 'game'.

I do my best to defend myself but as I've mentioned before this kid has super human strength. 

The best mode of defense is escape.

So last night, I instituted a barricade.

As soon as I freed myself from his grip, I made my escape.

I pushed past his over sized bean bag chair that I had initially sat in seconds before the attack and squeezed through the double doors.

Then quickly pulled the bean bag into position to block him from following me out the door.

He tried repeatedly to get past it but it's just too big and heavy for him to move (at least for now).

I was free.

I stayed close by in the living room so I could hear him.

Eventually, around 5:30 am, Josiah fell asleep.

I'm totally loving this barricade idea.  Keeps him in, me out and ideally, allows Rick and I to get some much needed sleep.

However, a couple of hours later, when it was time to wake Josiah for school, we discovered he had a full pull-up that had spilled out into his pajamas.  

He was messy and his room was stinky.  

Josiah was however, sleeping!

Poor kid.  At some point after I left his room, he needed my attention and my help in the bathroom.

But how was I to know?  

It's too risky for me to stay in his room with him when he's as hyper as he was last night.

It's also not fair for him not to have his needs met.

So, I've got this one figured out.

May take me a couple of weeks to gather the materials.  And, I may have to watch a few youtube videos to get it just right.

But, I'm determined.  

Josiah's just needs a small addition to his bedroom.

Josiah does not speak.

He doesn't have to.  He communicates quite well with his behavior.

He lets us know what he needs much of the time and has learned effective means of communicating without words.

When he wants a drink of water, he stands by the kitchen sink and hopes we notice.  Or, if a cup or water bottle is near by, he picks it up and brings it to us.  

When he does not want the food presented to him at meal time, he throws it to the ground, plate and all.

We have learned to use a lot of plastic around here.  We've also gotten really good at grabbing bowls and cups and plates mid-air.  

When Josiah wants to go outside, which he frequently does, he sits on the small stool by the back door and waits.  Or, he brings us his shoes. 

Occasionally, if we've forgotten to lock the back door, he just leaves.

That is never a good thing actually, because if we've forgotten to lock the back door, we've also probably forgotten to lock the gate.  

As soon as Josiah gains access to the back yard he does one of two things.  He tries the gate and attempts to leave the yard.  Or, he heads straight to the air conditioning unit behind the garage to 'play'.

The string toy or beads he undoubtedly has in his hand get shoved down through the small crevices at the top of the unit creating a delightful clanging, banging sound as they whirl around for a few seconds, before landing on the concrete below.  

Josiah plants his face down on the metal surface, staring intently at the excitement inside.

It only lasts for a few seconds, but it keeps his rapt attention much longer than that.

It's never a good thing to let your child 'play' with an air conditioning unit either, so we deter him as often as possible.  

Lately, Josiah has been conveying a brand new message.  

Last week he was sitting on the couch.  I was on one side of him and a caregiver was on the other side.  He took my arm and pulled me up to stand.  

Then he got behind me and pushed me ever so gently away from him and signed 'finished' with just a little too much enthusiasm.

I got the message.  He did not need me or want me in his personal space.  The caregiver however, was permitted to remain.  

He really likes her.

Later that day, Josiah took Chandler by the hand and walked her to the front door.  He opened the door, pushed her out on the porch, slammed it shut and walked away with a slight grin on his face.

When she came back in, he pushed her out again. 

Apparently, Josiah has decided we are no longer necessary.

He doesn't have to tell me twice.  My job here is done.   

How's this for some non verbal communication of my own?

Our little guy turned 12 a couple of days ago. 

Twelve .

Just a few short years ago we were bringing Josiah home from the hospital as a new born, with both of his eyes patched, not really sure what life would look like from that point on.

Then in the blink of an eye, he's 12, on the cusp of becoming a teenager and growing facial hair.

When did that even happen?  

When did this little guy grow to be a mini man?

When will he start shaving?

How is that even going to happen?

I watched him in the tub this morning, trying to figure it out.

Hair cuts are so overwhelmingly difficult for Josiah, how will we ever attempt shaving whiskers?

Will he be the only kid in 6th grade sporting a moustache?  The only one in 7th grade with a beard?

I thought about wax strips.

You know, the kind you warm up with your hands, adhere to your skin, then rip off really fast.

Of course, we'd have to attempt this while Josiah sleeps. And then, we'd only get one shot at it.  Rick and I would have to work in unison, each applying and removing wax strips with synchronized precision.

Otherwise, Josiah would be awake in a heartbeat and we'd only get one side done.

Then, he would be the only kid in 6th grade with half a moustache.

Maybe it just makes more sense to let his facial hair grow.

I can't imagine a razor coming in close proximity to Josiah's face and all going well.

First there's his incessant bouncing, then the sheer terror of something new and different happening, not to mention the strength with which Josiah vehemently opposes anything he is not on board with.

Yeah, I think shaving is highly overrated.

Josiah may only be 12, but quite honestly, something like this may be a good look for him.

Before I even open my eyes, I know it's 3:31 am.

Josiah has entered our dark, sleepy bedroom.  

Happens lately, just about every night.

OK, so some nights, it's 3:30 and not 3:31, but seriously, we JUST turned our clocks back an hour.

Shouldn't that impact this even a little?

Josiah has been (knock on wood) sleeping so very well for so very long that I shudder to think this is becoming a new pattern.

Yet, I know it is.

He enters our room in various ways.  

Sometimes he is quiet and stands motionless by my side of the bed.

Sometimes, he barges in, swinging the door with great gusto, laughing as he enters.

Sometimes, I hear him bouncing on his knees even before he makes his presence known.

Occasionally, I'll hear the water in my sink running.

Doesn't matter how he wakes me.  When I open my eyes and look at the clock, it's almost always 3:31 am.

It's 3:31 am when he realizes he is wet and needs me.

So, we make our way to the bathroom.  Josiah gets a fresh pair of pj's, clean sheets if necessary and a kiss on the cheek as I tuck him back in his bed.

I'm well aware as I exit his room and make my way back to my own, Josiah will most likely not fall back to sleep.

His day has begun and he is ready for some fun.

None the less, I snuggle under my blankets and hope I am wrong, praying for a few more hours rest.

Most often, as happened this morning, Josiah bursts back in our room, full of energy and bounces wildly on our bed. 

This is the point when I'd like to gently call out, 'Josiah is awake.  Please come get him.  He may want to go for a ride.'

As if someone working the night shift will come running and say, 'Yes ma'am, I've got him. Go back to sleep and don't you worry about a thing dear'.

Rick and I are the night shift.  We are the day shift and the sick shift and the holiday shift.

So in those moments when I really want someone else to handle it, I simply pretend I don't hear him.

There, I've said it.  I hesitate to write it but it's out now.

If I am sleeping more deeply than Rick and he hears him first, he almost always jumps up to take over.

You've just gotta love that man.  

In my imaginary world, if the night shift is on it, I am free to keep on sleeping.

Josiah stays up until it's time to really start our happy day.

This morning, my 4-6 hour, full focus, mental energy drink only lasted about 30 minutes.

I trudged through the morning, a wee bit grumpy doing my Mommy jobs.

Josiah was full steam ahead the whole time.

Then, shortly before his bus was to arrive, just as I sat to tie the laces on his tennis shoes, his eye lids began to droop.

Josiah will be a little late to school today.

He fell asleep just outside my bedroom door.  

I'm not exactly sure when it started.

But recently, our very bouncy, always hopping on his knees boy, stopped bouncing.

He stood up.  

He lifted one foot at a time and shifted his weight. 

Ever so slightly, he swayed.

Josiah held on to the edge of the kitchen counter and rocked his body back and forth.  

There was no music playing and it didn't last long.

As quickly as he started, he stopped.  

Josiah dropped back to the floor, content to resume bouncing.

But I saw it happen.

The next time, I was ready.

When Josiah stood and started to sway I held his hands and swayed with him.  

Picture 2 very awkward Jr. High kids at their first dance, not really sure what they are doing.  

Josiah pulled away after a few brief moments.

He didn't sway again, for a couple of days.

Then, Friday morning just before the bus arrived, I had an idea.

I pulled my cell phone from my pocket, turned on some music and asked Josiah to dance.

It took some coaxing, but eventually, Josiah reached for my hands and swayed with me.   

We danced the entire song.

At one point, he leaned the top of his head against my chest and stared down. 

Rick noticed that Josiah was studying my feet, as if working to copy my steps.

Every so often he looked up and grinned.  

Clearly, he was having fun.  So was I.

I'm not sure if someone taught Josiah to 'dance' or if he discovered this new movement on his own.

I don't really care.

Our boy is learning to cut a rug.

Now, Josiah dances with Chandler.  He dances with Rick.

He'd probably dance with you too, if you asked him.

All the eligible young ladies better get in line.  

Prom is just 6 years away.

Everyone is entitled to opinions.

Most of the time, I am happy to listen to them.

That is, UNTIL those opinions put limitations on my child.

Don't even go there.

I'm well aware Josiah has challenges.  

I understand he has great difficulty with most things.  

I'm quite sure I have a grasp on what he is and isn't capable of.

I do not need well meaning professionals to paint that picture for me.

If there are limitations on what someone is either willing or able to do to aide Josiah with the acquisition of new skills and abilities, fine.

I understand that too.

Just don't go down the road that says there's not much more we can do for him.

Cause if you do, my eyes will glaze over, my ears will tune out and my mind will suddenly fill with unrelated, much more pleasant thoughts as I smile sweetly and nod in your general direction.

I will hold my tongue and keep my emotions in check.

I will listen, because I was raised to be polite and respectful. 

I will even thank you for your honesty.

But,  I will not stand idly by and accept anyone telling me everything that can be done is already being done.

Once we are removed from the situation, I will let loose.

Today, I strapped Josiah in his seat belt as I emphatically stated, 'Do NOT listen to one word that woman said about you. It's not true. I'm sorry you had to hear all of that. You are a very smart boy with great potential.'

I try my best to keep an optimistic outlook in most situations.  

But if you want to witness a less than joyful attitude, just tell me. 'fortunately there aren't many people with as many challenges and limitations as Josiah'.

Based on the knowledge you have of my child at that moment, you may be right.  But, I'm not buying it.

Last time I checked, God was still on his throne.

Until the day he takes Josiah home to be with him there will ALWAYS be room for growth and change and vast improvement.  

Our boy is a work in progress.  We all are. 

Others may throw in the towel, but not me. I'm spit fired and readied for the task.

You may call me Anne Sullivan.

An extra pair of hands is a huge blessing when caring for a child with special needs.  There are many reasons for this.  For one, the long, sleepless nights take a toll after a while.  If sleep deprivation was ever used as a torture tactic, if anyone ever forbade me to sleep until I told them what they wanted to know, I'd spill my guts almost immediately.  I'm one of those people who thrives on a full 8 hours a night.  Thats why I have always been grateful that our children all slept through the night from a very young age.  Even Josiah.

But then something changed.   Eventually, Josiah just didn't need much sleep anymore.  I think it started somewhere around age 3.  He would be in bed, asleep around 8 or 8:30 at night.  By 1 am, he was wide awake, ready to start his happy day.  Sometimes he would not fall back to sleep until 4 or 5 in the morning.  If Josiah was awake, that meant either Rick or I had to be as well.   There were many long, sleepless nights for mom and dad. 

We tried our best to coax him to sleep.  We put him back to bed, repeatedly.  We sang to him.  We cuddled him.  We held him.  We used a weighted blanket.  We tried music.  We tried lights on.  We tried lights off.  We tried door open.  We tried door closed.  We tried just about everything anyone ever suggested that worked for them.  Nothing ever really worked. 

Once morning came, we were exhausted.  We didn't have the luxury of his youthful energy level.  Josiah however, was usually rearing and ready to go.  He could go for days on end with very little sleep.  The only way to survive this, was to tag team.  We would take turns staying up with him.  Some times we would switch half way through the night.  Some times we would switch nights.  One night Rick would sleep all night, the next night I would.  We figured eventually Josiah would crater.  Eventually it would catch up with him and he would crash.  Never really happened.

Fortunately, we stumbled upon a miracle.  I'm not sure where we heard about it. I don't know who told us about it.  I'm sure I would call them up and thank them profusely were I to remember.  I have not been able to do that.  I have however,  been able to share their amazing secret with others.  It has helped so many.  It is a harmless, inexpensive supplement, given just before bedtime.  It is called Melatonin. It helps insomniacs.  It helps shiftworkers who switch shifts and sleep schedules.  It helps blind children develop patterns of night and day.   It helps children with developmental delays who typically have sleep problems.  It comes in the form of a small white pill.  We crush it and disguise it in ice cream.  Josiah gets it every night. 

At first it worked really well.  We went for months with restful, peaceful, wonderful nights.  Then, eventually, it didn't.  No problem.  We figured, if a little helped a little, then a lot would help alot.  There were nights Josiah would get 3 or 4 of them, crushed in his ice cream.  If he awoke a few hours later, he got a couple more.  We would puree the entire bottle and concoct a Melatonin smoothie, if we thought it would work.  

When Josiah went to the residential treatment center, his sleep cycle became much more regulated.  He always went to bed at the same time.  He woke bright and early and on schedule.  He had long, busy days.  By night time, he would crawl up in his bed, put his little hands behind his head, close his eyes and go to sleep.  With NO melatonin.  I actually saw it once with my very own eyes.  Otherwise I would never have believed it.  The kid did this for months.  We were astounded.  We were quite pleased.

Josiah slept very well after he was discharged and lived at home again with us.  He crawled up in his bed, closed his little eyes and dozed off to sleep.  For about 2 weeks.  He became ill right after that.  He was up at night with bodily fluids projecting from both ends of his body.  For 21 nights. And days.  We were up too.  It was a regular party.  Lots of laundry.  Lots of carpet cleaning.  Lots of disinfecting.  All night long.  That was in February.

It's April.  He's back on Melantonin.  We're actually trying another sleep aid.  In addition to the Melatonin.   We figure it has to work eventually.  We think.  We hope.  We pray.  For now, Rick and I are very grateful to have each other.  And I am very grateful to not be teaching anymore.  I can always go back to sleep after I get the kids off to school.  I wonder how single parents raising a special needs child cope.   I wonder when they get to sleep. 

If you know someone in a hospital, bring them a fleece blanket.  If you know a single parent raising a special needs child, give them the gift of a few hours sleep.  Watch their child while they rest.

Oh, and buy them a bottle of Melatonin.

Somewhere I remember hearing, babies identified in utero with Down Syndrome only have a 25% chance of surviving the birthing process.

1 out of every 10 is ever even given that chance.  Many parents opt to abort.

 How very sad. 

After learning our unborn child had Down Syndrome, we were scheduled to meet with a team of specialists to help us navigate the road ahead.

Turns out only one specialist showed.   I use the term 'specialist' loosely.  All I recall from our visit was his question.

What are you going to do?

I was confused.  I looked at him blankly.

 I will never forget his response.

Staring at me with a stoic expression he stated, I'm of the mind life without intelligence is no life at all.  You are far enough along in your pregnancy, you only have one week left to make your decision.

He was talking about taking the life of my unborn baby,

If this is what life WITH intelligence brought, a total lack of insensitively without a shred of compassion, I wanted none of it.

There is no decision to make. We are keeping this child, I shot back.

He seemed shocked.

He mentioned a book his wife was reading to him.

'Expecting Adam' is the true story of a child identified in utero with Down Syndrome.  Adam's parents, learned scholars at a prestigious ivy league school are warned by doctors, advisers and friends not to keep the baby.

Reading the book I learned most Down Syndrome babies are aborted.

I was stunned.

Shortly after Josiah's birth I felt the need to surround myself with other woman who had children with Down Syndrome.  Through some networking, I was able to find 3 other mothers in our small town experiencing life similar to my own.

We met at a local coffee shop. Everyone shared  stories.  Each mother had similar tales of insensitivity by specialists.

When one of the women assured her doctor she was keeping her unborn Down Syndrome baby, he became irate.  He moved in close, raised his voice,  and nearly screamed,  Who do you think you are, Mother Teresa?  Life with a child like this is very difficult.  You are making a big mistake.

She was in tears, but held her ground.  Her precious son was born a few months later.

Wouldn't it be better when a baby is identified in utero as having a disability, for a team of specialists who meet with the parents to be comprised of other parents who are just a little further down the road?  People who have compassion and sensitivity, who are devoted to their children and can't imagine living life without them.  People who can shine a light on the path and wrap their arms around burdened shoulders and say, It's going to be alright.

 I'm of the mind life without compassion is no life at all.

The call came early.

 I remember the phone ringing.  I remember thinking, this is it.  The Dr. is going to tell us our unborn child has Down Syndrome.

I just knew like you know about things. 

The funny thing is I was fine with it.  I really was.

Even before the amniocentesis, I remember reassuring my sister everything would be okay.

We have 4 'normal' children.  It will be interesting to see what life is like with one who just has a few more hurdles to jump over, I told her.

After the Dr. confirmed it,  I needed the right way to explain it to the girls.

The next morning I asked, Do you remember when the doctor asked you to leave the room during the ultrasound?  Do you know why he did that?

This baby is going to have Down Syndrome.  Do you know what that is?

 I am NOT having a child with a disability in my family!  The oldest was indignant.

 Remember this is the same child who wanted to ship her first sibling to Alaska.  I was undaunted.  "Well sweetie, you don't get to choose.  God does and He chose our family for this child.  Then I began to explain further with a story.  Here is what I said. 

Imagine you are standing in a single file line.  You're not quite sure why you are there, but you know you are right where you should be.  As far as you can see in front of you and as far as you can see behind, there are people waiting, just like you. 

No one seems to be in a hurry.  Everyone is very content to just wait. The line moves slowly and you can eventually see as you get closer hands reaching down to give each peson a beautiful box.

Now you start to get excited.  You had no idea you would get a gift.

Each box is beautifully wrapped with goreous ribbon and a big, enormous bow.  You've never seen anything quite like this.  You can hardly wait to get yours.

It's almost your turn.  It's clear now the hands you see belong to God.  Each person is being given a gift straight from the hands of God.

Everyone is so happy.  Each person skips away with her box, thanking God for her beautiful gift.

It's your turn.  You reach up to take your box.  Then pause. Your box looks very different from all the others.

The paper is torn. The corner is crumpled and smashed in.  The bow is missing. The ribbon is ripped.

God is standing there handing this gift to YOU.

I waited just a moment, then asked my girls, what would you do? 

Without a moment's hesitation the oldest replies, what's in the box? 

The younger sister's voice wells up with emotion, I would take that box and love that box and keep that box forever.

Many people have commented God only chooses special people for His special children.

I know they are meant as words of comfort.  They are not always comforting.

My comfort is in knowing God has plans for us and plans for this child.  He will be with us through this entire journey. 

That alone gives me peace.

I've thought for some time now our family would make for an interesting reality show. I'm not sure I'd want anyone to have that much access to everything that occurs within these walls though.

We have 5 children, ranging in age from 20 down to 9.  The oldest has the 'I should be an only child' syndrome and has since she was the only child many years ago.

I distinctly remember sitting her down to gently explain she was going to have a little sister or brother.  Barely two, she looked me square in the eye and said, "Ship that baby to Alaska!" 

That pretty much describes the relationship she has had with her younger sister from day one.

Despite my father's best attempts at fostering loving feelings between the girls when they were young with a song he composed and recorded for them entitled, "I love my sister" the bond was never a strong one.

 I reassured myself they would become the best of friend, once they went off to college.  We are just beginning to see signs of a budding friendship now that they are not under the same roof. 

When the girls were 3 and 5 we watched videos of them as babies.  My husband and I had recently given away all our baby things, quite content with our 2 daughters. 

Those videos did us in. 

We sobbed and decided right then we were open to having more children.  Three more arrived within the next 5 years.  We had a boy, another girl and then Josiah. 

At 22 weeks gestation, we were told our unborn child had Down Sydrome. 

The ultrasound showed 4 markers for Down Syndrome; a short femur, extra skin at the nape of the neck, I can't recall the third marker, but the last I will never forget. 

The Dr. looked at my husband and me and said, "Looking at you both, I would expect this baby to have a big nose, but he doesn't.  This child has a small, flat nose."

He might as well have stopped talking at that point.  Because quite honestly, all I kept thinking, (and I know this sounds vain but I could not stop thinking to myself)  "I have a big nose???"  "Really?"  "I've always known my husband has a big nose, but ME?"  

I was so consumed with the big nose comment I thought more about it than of my unborn special needs child during the drive home. 

A week later, an amniocentisis confirmed the diagnosis.  Our child had Down Syndrome. 

Thus began our journey with Josiah.   Even before he arrived on the scene, he was rocking our world.

Join me as I share some of the trials and triumphs our family has experienced on this eventful, oftentimes chaotic, always interesting adventure.