All I Want for Christmas Is...

So, I'm totally copying my good friend over at spectrumletters.blogspot.com and posting a Christmas ideas list for spectrum or spectrum-ish kiddos.  Heck, some of the things on this list are great for typical kids, too.  Before I start, I have to give props to the people in Davy-boy's life that encouraged the purchase of most, if not all, of these items.

Team Davy.  Is.  The.  Best.

1.  These.

Holiday Eyes Glasses.  We've actually had these around the house for years.  A friend gave them to the Big Three when they were little and, man, did they love them.   Thank goodness we hung on to them because Davy has just discovered them and... wow!  All of a sudden, the chaos of a holiday gathering... well, these are giving him a connection point with people.  Pretty, freakin' awesome.

Here's where you get 'em.

http://www.amazon.com/20-pairs-Different-EXCLUSIVE-Christmas/dp/B004ATMPE6/ref=sr_1_1?ie=UTF8&qid=1417448164&sr=8-1&keywords=christmas+light+glasses

Yeah, at first glance, the price tag is a bit of a shocker.  But these make great little gifts.  It's a no brainer around here.

2.  Kinetic Sand

This stuff.  Amazing.

We pull it out when the boy just can't figure out what to do with himself.  And I added an old set of cookie cutters to the mix... voila!  Happy place.  He loves to cut out letters and shapes.  Occasionally, we'll get crazy and do some animals.  Oh, and I just have him use it on an old cookie sheet.  Cuz, really.  Who needs a $20 sandbox?

We bought ours at Brookstone.

http://www.brookstone.com/sand-by-brookstone?bkiid=main_banner_zone|hmpg|a|banner|2|sand

Recently, I've seen other brands at Target and Walmart.  I'm sure they're all about the same, but we really like what we purchased from Brookstone.

3.  Read and Build Duplo Blocks

So my boy doesn't really play with toys.  A little bit here and there, but for the most part, the money we have spent on typical toys just hasn't paid off.

And he doesn't do Legos.  They're just too darn small.  He likes the IDEA of Legos, but when it comes down to the actual building of them... well, he pretty much shuts down.

Fine motor skills.  Bleh.

But then we found these.

And they're awesome.

He can manipulate them.  He can follow the (very simple) building instructions.

And... there's a story with each one!

A very simple story, but still!

These were the first stories he really followed.  And they opened the door to his little imagination - which was tightly closed until just recently.

Huge win around here.

And yes.  We bought all of them.

You can get them pretty much anywhere.  Wal-Mart.  Target.  ToysRUs.

Or Amazon.  Love me some Amazon.

http://www.amazon.com/LEGO-DUPLO-6759-Busy-Farm/dp/B007Q0OKKS/ref=sr_1_3?ie=UTF8&qid=1417451877&sr=8-3&keywords=lego+read+and+build

4.  Okay, really.  In the end, none of this other stuff matters without this.

This.  Is.  Life.

This swing from Hearthsong has been our greatest find since we started this journey with Davy.

It hangs from the tree in our front yard.  We are on it pretty much every day and usually several times a day.

Rain or shine.

It's fabulous.  In fact, last week, the swivel carabiner that my step-dad bought to hang it (so it would spin, of course), snapped in two.

I freaked.

I mean, I literally freaked.  I lost half the night's sleep over it.

The next morning, when I realized it was going to be a simple fix, it was as if I was born anew.

I kid you not.

Yeah, it's spendy, but it will last us for years.  Seriously.

Here's a pic of my boy in his favorite spot on the planet (outside of Disney World, of course)...

How cute is he?  

And here's where you can purchase the awesomeness.

http://www.hearthsong.com/Outdoor-Play-Toys/Round-and-Round-Nylon-Rope-Outdoor-Swingand153;.htm

5.  Chewies.  

Most of the time, when you encounter Davy-boy, you'll find a little red or blue circle dangling around his neck like a necklace (see pic above).

This, my friends, is a chewie.

And it has saved countless shirts from utter destruction.

When my boy is stressed, he chews (or licks).  

And he's stressed a LOT.

So, the chewie has been a wonderful thing around here.  

We never leave home without it.

We tried out a few different kinds (and spent quite a bit of money doing it) and decided these are our favorite.  They may not be as "cool" or "trendy" as some of the others out there, but one thing that's great about Davy and his autism is that he DOES NOT CARE.  

Works for us!

Here's where you can get them.  Oh, and we like the ice cream or red dot styles for their exceptional chewiness.  

http://kidcompanions.com

6.  LED Lights

Miss Kassie gets full credit for this one.

Wait a minute.  Who am I kidding?  

Miss Kassie gets credit for most of the items on this list.  

OT's ROCK.

Anyway, we strung up some inexpensive LED lights around the inside of the hidden-hole under Davy's bunk bed.  

Voila!  

A totally cool and calm space.  

And the best thing about these lights is that they're remote controlled.  And can be light in over a dozen different colors... or even flashing different colors.

He loves these lights.

http://www.amazon.com/SUPERNIGHT®-Waterproof-Flexible-300leds-Changing/dp/B00ASHQQKI/ref=sr_1_8?ie=UTF8&qid=1417493559&sr=8-8&keywords=LED+lights

7.  Suckers.

But not just any sucker.

Did you know that suckers are one of the four main food groups?

Yep.

I'm not sure my child would be functional each day without them.

No joke.

Now, I never used to be picky about suckers.  

Not until my boy was going through 10-15 a day.  

Again, no joke.

But then we came across these babies.  

And the heavens rejoiced.

These babies are all-natural.  No artificial colors or flavors, real fruit extracts.

Good stuff, people.

I keep a bag in the van and a bag in the house.  

And Mark is sent to the store REGULARLY to buy more.

You better believe a bag (or two... or three) of these will be in Davy-boy's stocking.

And he'll be thrilled.

Once again, Amazon to the rescue!  (Note:  You can also get them at Sprouts and Whole Foods)

http://www.amazon.com/YumEarth-Organic-Lollipops-12-3-Ounce/dp/B000X3TPHS/ref=sr_1_1?ie=UTF8&qid=1417494208&sr=8-1&keywords=yummy+earth+lollipops

8.  Two words.

Elephant & Piggie.

Again... Miss Kassie rocks.  

So, David struggles to understand that my thoughts are different than his thoughts.  

That your thoughts are different than his thoughts.

That there really IS a thought different than his thought.

Enter Miss Kassie and our introduction to the world of Elephant & Piggie by Mo Willems.  

Thank you, Miss Kassie!

These books are wonderful.  The characters are sweet and funny and lovable.

The scenarios are typical preschool/early elementary situations, but are presented in a way that my boy is able to understand.  

And there are thought bubbles (will have to post about these later...)!  These are helping Davy begin to grasp the idea that we don't all think and feel the way he does.  

We're not there yet.  

But we're making progress.  And there's a lot to celebrate as a result!

So that about sums up our list.  

There are many particulars that we could not do without that are probably specific to my boy (i.e. Coldplay LP's, map puzzles, map quiz cards, wall maps, map books, and a good, solid record player), but these are the essentials around here that I thought might be applicable to the life and ease of another kiddo or two on the spectrum (or not on the spectrum).

Happy shopping!

Oh, wait.  I forgot one more thing...

This.

Because if Momma ain't happy...

And because then you can make this.

MERRY CHRISTMAS!!!!

How the Greek Orthodox Church Helped A Somewhat Evangelical Christian Mom Deal with Autism

Things have been pretty rough lately. 

I mean, they’re good. 

Therapy is good.  School is good.  Marriage is good.

The Big Three are good. 

Well, kinda. 

They’ve been a little frustrated with autism lately. 

It’s hard putting your little brother first ALL THE TIME.

It’s hard having to pay attention to the environment you’re in, so that you are mindful of what may or may not rock the little guy’s sensory boat, so to speak.

Especially when you’re thirteen.

And especially when you have a pretty dynamic personality.

And especially when your dynamic personality pushes EVERY LITTLE autism button your little brother has. 

Every.  Single.  One.

No one likes to have his or her buttons pushed.

Especially little guys with autism.

When those buttons get pushed our little guy with autism goes into what’s known in the therapy world as “fight or flight.”

Except Davy doesn’t flight.

He fights.

And it hurts.

There’s been a lot of that lately. 

Bless him.  Charlie, especially, just can’t seem to do anything right these days. 

In Davy’s eyes.

And what’s super hard is that he really is doing almost everything right.

He’s trying.  He’s listening.  He’s consistently making an effort to connect with Davy.

And Davy just isn’t having it.

Davy is hard on everybody in the house, for sure. 

I probably get the worst of it.  He feels safe with me, so I get a lot of his angst. 

But I’m his mom.  I can take it.

Charlie shouldn’t have to.

It’s not fair. 

And we’re not quite sure what to do about it.

But last week I received insight into this situation in the most unlikely of places.

A Greek Orthodox Church.

Charlie and I attended a vespers service in a local Greek Orthodox parish.  We went as a part of our homeschool co-op world history study, and also because a close friend recently converted to Orthodoxy.  We thought it would be cool and interesting to check it out a bit.

The whole experience was fascinating and thought provoking…  and foreign. 

I found myself at times watching with wonder, at times trying to understand what in the heck was going on, and at times fighting that old enemy, boredom. 

It was LONG, people.

By the end of the service, I was just so relieved that both my teenaged boy and his buddy managed to hold it together through the whole thing. 

I was wholly unprepared for what came next.

The priest came out again and began to share a few personal words with the parishioners.  He explained why he had chosen a particular Psalm, and how he so identified with it.  And then he went on to say that all the scriptures chosen help him identify with the life and death of Christ.  

In particular, he talked about how he had been falsely accused as of late… and how Jesus was also falsely accused.  Jesus forgave those who accused (and KILLED) him by saying, “Forgive them.  They don’t know what they’re doing.”

And then it dawned on me. 

Charlie is being falsely accused by David. 

I am being falsely accused by David.

We all are being falsely accused by David.

And it hurts.

But the little guy doesn’t know what he’s doing.  He really doesn’t. 

When I remember that, my compassion tank is just a little fuller.  And maybe I’m just a little bit more like Jesus. 

High-Functioning Autism: Why It's Hard and How the Steeles Roll With It

I've heard it said (and you may have, too), "If you've seen one child with autism, you've seen one child with autism."

The layers of meaning within that one seemingly simple statement have hit me full force in the face multiple times since we received David's diagnosis last spring.  

I had an inkling of an idea of what life might look like, based on the little I knew about autism.

Just an inkling.

Actually, I didn't have a clue.  

The thing is, as David has developed and adapted, with all the therapy, strategies and supports we have worked so hard to put in place for him in the last (almost) 18 months, his autism has, in many ways, become more complicated and challenging.  

It's unreal how that 38 lb., 42" tall, five-year old little boy can dictate the course of our day-to-day lives.  

High-functioning autism. 

It’s tricky stuff. 

The descriptive “high-functioning” is deceiving.  It’s there because his IQ is in the average to above-average range.  He’s a smart little guy.  But the host of challenges beyond his intelligence keep us on our toes around here. 

And that label “high-functioning” can be pretty misleading.

It leads to expectations, which lead to disappointments, which lead to hurt and frustration, which is really hard.

Does Davy function at a very high level for a child with autism?

Yes.

And I am grateful.

Is Davy able to exist and function in most typical environments?

Yes.

And I am grateful.

But Davy continually struggles with...

- sensory processing

- social cues

- gross motor and fine motor delays

- coping skills

- family relationships

And these make living with autism hard for us.

I don’t know how our family compares to other families with children on the spectrum.  From the various books and blogs I’ve read and the friendships I’ve made with other moms and dads with spectrum kiddos, I think we’ve probably got it pretty easy.

But the problem with “easy”… the problem with high-functioning autism… is that, as a parent (or a sister, or a brother, or anyone else close to the child), when things are going well, when your child is acting “normal” (because he often can), you tend to start second-guessing the autism. 

And when you start second-guessing the autism, you get lazy concerning the autism.

Your expectations of the child increase.

Your response to the child’s behavior changes.

Your compassion for the child diminishes.

Your sixth-sense for those little triggers that could trip the autism BOMB is dulled.

And then.  All of a sudden. 

There’s an explosion.  

All.  Over.  You.

And it hurts.  Everyone.

A child with high-functioning autism is STILL a child with autism.

For us, this means that even though we often can walk in and among our community looking quite typical, there are undercurrents of stress, emotion, sacrifice and accommodations running through the make-up of our family at all times.

So this is a bit of what autism looks like in the Steele home…

- The success of any given day is usually assessed by how well we each maneuver our interactions with David. 

- Each “big” person in our house has learned to anticipate triggers that can set David off.  Sudden noises are avoided AT ALL COSTS.  We don’t sit next to him or attempt to engage with him in an activity unless he invites us in (though he often does).  Physical touch is on his terms.  His room is sacred.  Change something at your own risk.

- Structure and routine are of utmost importance.  Sometimes that’s unrealistic in a house of teenagers, but we do our best.

- Our teenagers need us, too.  Mark and I work hard to make time for them.  Most often this happens late at night when David is in bed.  Yes, I’m exhausted at this time… but that’s what coffee is for, right? We have a couple of really great babysitters that know and understand Davy and have worked to build a relationship with him.  We budget so we can take the big kids out on a regular basis, do special things with them, make space to give them the undivided attention they need… and that we want to give them. 

- When things get tense at home (as they often do), we give the big three permission to escape to their rooms… with no guilt.  That’s been a big adjustment for us.  I never liked the idea of my kids shutting themselves away from the activity of the house.  But Davy has changed all that.  And it’s okay. 

- Unfortunately, the big kids often bear the brunt of Davy’s angst.  We try our best to be a good buffer, but it doesn’t always work out.  And because we are often under a good deal of stress, we can get short with one another.  Repentance and forgiveness are a regular practice around here. 

- My big three can walk into a room and, in a moment, assess the atmosphere and what needs to be done (or often more importantly, NOT done).  Autism has taught them this.  I believe this skill will serve them well in life.

- Expressions of affection are invaluable.  When one of us receives a hug from David, we all celebrate.  Quietly, of course.  

- The world does NOT revolve around David.  But often our home does.  No, it’s not fair.  No, it’s not easy.  But, the word “autism” actually means “selfism.”  His brain is literally locked on himself.  Believe me, we are working on this.  He CAN learn, but it takes time and patience.  As he grows and develops, he will learn more about how to make room in his heart and mind for others. 

- David and I (and sometimes Mark or another member of the family) go to five therapy sessions a week.  FIVE.  We are constantly working on all the challenges that come with high-functioning autism (for him and for us).  It’s a sacrifice for us in many ways. 

- He’s worth it.  So, so worth it.

David is here because God put him here.  He was GIFTED to our family.  And, honestly, the "gifts" that have come into our make-up as a family since his arrival, and even more since his diagnosis of autism, make us who we are.  

And I wouldn't change a thing.

Owning It

Lately, life for me has been unrelenting.  In fact, I can't really remember the last time it wasn't so.

I try to keep things in perspective. 

I acknowledge that there is so much that is good and wonderful in my life. 

I work hard to keep from feeling sorry for myself.

I try to keep my heart in check when it comes to comparing myself to others, because I know that the large majority of the world suffers.  Really, truly suffers.

And I do not.  

Not in comparison anyway.

And yet here I sit.

I'm trying not to be overly dramatic.  But...

I'm depleted.  

And I'm owning it.  

Owning my frustration.  Owning my exhaustion.  Owning my disappointment.  Owning my sadness.  

I'm sad that my son has autism.  I'm sad that he has to work so hard to exist in our world.  I'm sad that his little heart and mind are clogged with sensory processing challenges, missed social cues, learning challenges, and so much more.  I'm sad that he struggles to connect with his family, and I'm sad that it hurts their hearts when he can't.  I'm frustrated by the limitations autism places on my family.

I'm exhausted by the demands of our schedule.  I have a minimum of SEVEN appointments to make a week.  Therapy for Davy.  Therapy for me.  And I'm frustrated because this schedule makes it difficult for me to do all the other things I need and want to do.  

I'm sad to be 45 years old and in constant pain.  I'm frustrated by the limitations my pain places on my life.  On the lives of my children and my husband.

I'm sad that the above often keeps me from enjoying so much of the good that is around me all the time.


I'm owning my frustration, my exhaustion, my sadness.


It's scary to do this.  It feels like an act of betrayal.  Like I'm doing something wrong.  Like I'm forgetting how good God is and how much good there is in my life.

But... 

I've been here before.

I know what it is.

Depression.

I've tried to steel myself against it.  I've tried to muster the strength to push it away.

I want to be able to access all that I know God has available to me in this life, and I want my faith in God to give me what I need to rise above my circumstances.

Actually, I want my faith in God to CHANGE my circumstances.  

But that's not my reality.  

In the last few months, those tell-tale signs of depression have resurfaced.  The weight on my chest.  The sleep struggles.  The shaking hands.


A wake-up call.

I'm owning it.

It's me recognizing that I can't do it.  I can't be full of faith enough.  I can't be connected to God enough.

I'm not enough.


But His presence is.

The Bible is full of stories of men and women in desperate circumstances whose cries for God's help are met with His intervention.  His rescue.

It's also full of stories of men and women in desperate circumstances whose cries for God's help are met instead with His presence.  HIS PRESENCE.  

His presence brings comfort.  His presence brings peace.  His presence brings joy.  His presence brings strength.


I'm owning my frailty.  I'm owning my disappointment that my circumstances are what they are and that rescue is not likely.  I'm owning the sadness that often comes over me.

And owning all this is opening my heart to His presence.

When I said, "My foot is slipping," Your love, O Lord, supported me.  

When anxiety was great within me, your consolation brought joy to my soul.

Psalm 94:18-19

Rescue would be nice.

But His presence is better.  

Exceedingly Abundantly

A light touch on my hand.  

A whisper.  

A small, warm body crawling into my bed and nestling deep into me.  

Laying there in silence, just enjoying each other's presence and the comfort that comes from that kind of close connection.

Then... a caress.  He placed his hand on my face and literally stroked it.  

Tears.   

The ten minutes or so that we lay there together this morning filled my heart to overflowing.  

The mutual nature of the moment lifted the cloud that often lies over my heart in regard to Davy... and blew it away.

My little boy has come so far.  

It's hard to explain what it's like to raise a child with autism.  It's hard to help others understand the kind of patience, restraint, focus, and selflessness that parenting him requires.  

We stay pretty near a state of total exhaustion at all times.

But this child, this wonderfully complicated child, has deepened us in a way that no other life experience could.  

And the rewards, when they come, are worth more.  They mean more.

I don't mean to diminish the significant moments that come with raising our other three (neuro-typical) kiddos.  Those are incredibly meaningful and life-changing.  Being mom to them is one of the greatest joys of my life.

But I have many beautiful memories of cuddling with each of them in bed.  So many.

With Davy, I now have one.  Its value is beyond measure.

When we first received Davy's diagnosis, my mom began praying Ephesians 3:20-21 over him.  I have prayed it, too.  But my mom prays with faith and expectation.  My prayers are more like cries from the depths of my heart.  Sometimes they're even wordless cries.

He hears both.  I know He does.  He hears me and forms into words what I cannot - making my prayers more than I can ask or think.  

And then does exceedingly abundantly more.  

Some People are Worth Melting For

Have you seen Frozen?

If you haven't... stop reading and go.  Now.

If you have, then please tell me you loved it.  If you didn't, that's okay.

But I don't think we can be friends anymore.

My favorite moment in the movie is when Olaf and Anna are back in the castle, and Anna is dying as she slowly freezes to death.  Olaf is trying to help her and lights a fire in the fireplace to get her warm.

Oh, and Olaf is a snowman.

Which makes this act more than just kind.

It's selfless and sacrificial.

Anna tries to stop him.  She knows he'll melt.

And this little snowman, who before now seems to be oblivious to his vulnerability, responds with...

"It's okay.  Some people are worth melting for."

So beautiful.  So profound.

Yesterday, Davy and I watched an episode of Daniel Tiger's Neighborhood together (I love that show).  This particular one was all about what makes you special.  The lesson was clear.  You are special because you are you... not because of what you can do.

At the end of the episode, Davy said, "I want to be special.  When will I be special?"

Oh, Davy.

My friend shared this scripture with me the other day, and I've been meditating on it ever since:

...those parts of the body that seem to be weaker are indispensable, 

and the parts that we think are less honorable 

we treat with special honor.

I Corinthians 12:22-23

When I found out I was pregnant with Davy, I did a lot of griping.

A lot.

First of all, I was pushing 40.

Second, I was on the verge of major back surgery.

Third, after several years of trying for #4, we had finally settled our hearts and decided we were done.

We passed on all the maternity clothes, the baby clothes, the baby toys.

Done.

So, the news left me reeling a bit.

And grumbling.

And I guess one day, God had had enough.

It's not that often that I feel the Lord speak to me.  Like... really speak to me.

But on this particular day, I believe He did.

This is what I heard...

"Stop it.  This child is a GIFT."

Okay, then.  

Got it.

So I settled in for the hard part - the pregnancy - and began anticipating our "do over."  I saw this baby as a chance for Mark and me to do it "all" one more time.  

And I embraced it.

And Davy was born.

And he was a gift.

And it was hard.

And it was unpredictable.

And it was exhausting.

And he was worth it.

And it STILL is hard.

And it STILL is unpredictable.

And it STILL is exhausting.

And he STILL is worth it.

So, Davy?

Are you special?

You are indispensable.

You are a gift.

You are worth melting for.

The Meltdown

I'm not a stranger to dark and oppressive.

In fact, I'm kind of an old pro when it comes to dealing with these two nemeses.

I know how to pray.

I know who to call.

I know what to do.

But lately I find myself faced with a new oppressor.

And this one has me stumped.

The irrational screams.  The flailing arms and legs.  The defiant and angry outbursts.

They leave me feeling completely and totally wrecked.

How do you respond to the little boy who is at once both the culprit and the victim?

What do you say when he is unable to listen?

What do you do when he is so consumed by the meltdown that everything you do just makes it worse?

The momma tiger in me wants to beat down the tormentor, but the base, broken part of me just wants to crawl into a corner and hide.

And neither are options.

I can't beat down this tormentor.  He isn't likely to go away.

I can't hide away.  My little boy needs me fully present.

This beautiful little person needs me to stick by him.

To pray for him.

To seek answers for him.

To fight for him.

To hope for him.