First Scout Camp

First time backpacking into camp

First time making a steep 1 mile hike

First time keeping up with his troop

Empty Recipe Box

I have a great friend who can create spectacular recipes in her mind.  She knows exactly what things will taste like before she even mixes the ingredients together .  She's so talented in fact that she has opened up her own, very successful, Cafe.  I, on the other hand, rely heavily upon precise, step by step instructions, only purchasing recipe books that feature full color photos alongside each recipe.  It's easier for my mind to work through when I know what the final product should look like.

But what to do when there are no instructions?

How does one mix and shape and mold a potential masterpiece

without even understanding the ingredients they are working with?

Handing out Valentines in High School may be frowned upon

unless of course you're a 16 year old boy 

with an autism spectrum disorder

in which case you don't care much about the trend of the day.  

Or the decade for that matter.

As my friend described her autistic son's valentine giving experience

I wondered what wonderfully quirky experiences 

our own future would hold.

How grateful we are to be a part of a neighborhood

that has known Nick from the time he was born.

He marches to the beat of his own drum.

They get that.

And they love him for it.

It takes a village to raise a child.

I love our village.

we were driving home from therapy

when we passed a group of his friends

riding their bikes.

"I want to ride a bike," he said.

"Then you will!" I answered.

With his shiny red helmet and hand-me-down dirt bike

we went up and down the sidewalk, up and down the sidewalk

just like we have a million times before.

and it didn't happen.

Just like it hasn't a million times before.

I don't know if I want to scream or cry.

Sundays at my house

Victory #1: I didn't cry today.

He has decided he loathes Sunday but as hard as he tries he's not going to make me hate it. I cling to Sunday tighter than a child to his mother. It's my reprieve, my sanctuary, fuel for my fatigued soul.

Victory #2: We missed the opening song, the opening prayer, partaking of the sacrament and sitting by our other three children but we made it there just the same.

determined to win this sabbath day struggle,

It's all about your heart

When he was first diagnosed

our world revolved around one thing and one thing only, finding a cure.

We researched, we worked, we fasted, we prayed,

we asked God for a miracle

but God had already given us our miracle.

Happy Birthday

to one of the greatest miracles

a mother has ever received,

This song speaks perfectly to the love I have for my imperfect boy :

"All About Your Heart"

by Mindy Gledhill

I don't mind your odd behavior

It's the very thing I love

If you were an ice cream flavor

You would be my favorite one

My imagination sees you

Like a painting by Van Gogh

Starry nights and bright sunflowers

Follow you where you may go

Oh, I've loved you from the start

In every single way

And more each passing day

You are brighter than the stars

Believe me when I say

It's not about your scars

It's all about your heart

You're a butterfly held captive

Small and safe in your cocoon

Go on you can take your time

Time is said to heal all wounds

Chorus

Like a lock without a key

Like a mystery without a clue

There is no me if I cannot have you

The 4-1-1 on the 9-1-1

Why did you call 9-1-1?

I am not sure.

(curiosity. playing with a friend. They hung up immediately when 911 answered)

How did you feel when they called back?

Like my stomach was going to break into pieces.

Then what did you do?

I looked for Dad and You.

(I was at Home Depot. Brandon, who had been working in the yard, had stepped next door to help the neighbor carry in a piece of furniture.)

What did the lady on the phone say when you couldn't find us?

She didn't say anything. She just stayed on the phone.

(when I pulled up to the house 6 minutes later Nick handed me the phone and I had the privilege of explaining to the lady at emergency services why our autistic 8 year old hadn't known where his parents were.)

How do you feel about 9-1-1?

I am never, ever, ever, ever, ever, ever going to call it again. I didn't really call 9-1-1. It was a big joke! Can we stop talking about this?

I feel really happy today

He sounds like he's hearing impaired

and I have to ask him to repeat things approximately three hundred and twelve times a day. When I hit a wall I use our 11 year old interpreter who has by some miracle always understood his younger brother.

I was thinking again about how magical it is to hear him speak. After years of autistic silence the sound of his voice is music to my ears.

Sometimes my heart feels so full I just want to shout from the rooftop

"MY SON CAN TALK!

MY SON CAN TALK!

MY SON CAN TALK!"

it never gets old,

My husband calls it a love fest

1. dad
2. mom
3. resource teacher
4. speech therapist
5. occupational therapist
6. school teacher
7. school psychologist
8. principal

all gather around in a semi-circle for the annual IEP (individualized education plan) meeting. Sixty minutes packed to the brim with endearing Nick stories and oohs and aahs over how far he's progressed and lots of feel good moments as we form a new plan of action for the upcoming year. As todays meeting drew to a close and we were patting each other on the back the principal spoke up . . .

"Nick did the cutest thing yesterday. He came up to me in the lunch room, touched my arm and said I have the cheese touch." *chuckle*chuckle*

apparently she hasn't read Diary of a Wimpy Kid

Bold move giving your principal the cheese touch,

don't you think?

Did I mention I'm afraid of heights?

"The Sky Coaster is a sport/amusement attraction that offers all the thrills and excitement of skydiving and hang gliding. The attraction requires participants to be strapped into a full-body harness (usually referred to as a flight suit) that supports one to three flyers at a time.

From a static point of approximately six feet above the ground, flyers are pulled aloft by a launch cable until nearly reaching the top of the launch tower. At this point, flyers are approximately 143 feet above the ground, and their flight is ready to begin. Upon being given the signal, the flyers pull the ripcord, releasing themselves from the launch cable to rapidly swing toward the ground at speeds reaching up to 80 mph. The overall feeling is similar to that of swooping along the ground in a hang glider, or of skydiving."

Strap a woman in who is deathly afraid of heights and you'll have a good sense of what it feels like to send your special needs child to his first day of third grade.

Hoping the anxiety over pulling the ripcord is worse than the actual ride.

Happy back to school,

Aren't his new glasses cuter than cute?

Lamey Shmamey

a quarter promised for every time he stays in bed through the night

by my calculations so far he's earned

$2.25

yet his jar remains empty

apparently it's too much work for his mother

to obtain quarters from the bank,

p.s.

tried medication.

observed an intense obsession with wild west and old timey cars.

must write to company so they can note findings on "warning" label.

This is an uncomfortable subject

because I know that there are two largely opposing opinions on the matter

both which reside solidly within me

My child is not on medication

unless of course you count his Animal Parade vitamins

which I have remembered to give him all of five times this summer

The prospect of medicating him scares me.

I've been a quiet observer as I've sat through support group meetings

and listened intently to friends who have hands on experience

I have been thankful for our situation

but our situation is changing

his thoughts and behaviors have turned increasingly more worrisome

and it's forcing me to think about things that I don't want to think about

forcing me into decisions I don't want to make.

"I need to tell you it is always a difficult decision for parents to make at this stage but I don't know of any parents who have regretted doing it. I just thought you ought to know that."

Well, thank you doctor.

We'll get back with you soon,

He's a shrewd business man

I was busying myself with sugar cookies

while he took care of the sign

it wasn't until the first customer of the day

started rifling through his wallet

that I noticed the inflated price of lemonade.

I pulled our little salesman aside and firmly explained

that all sale items were to be .25 cents

he made quite a haul that day

and although math isn't my strong point

I know how many cups we had

and how many cookies I made

and let me just say

I don't think Mr. Nick stuck to our .25 cent agreement

sorry.

your embarrassed neighbor,

I love

how busy it keeps the children

how well it teaches (or should teach) them about money

and overhead, and tithing and savings and work

the kind interactions with neighbors

I hate

the obligation that friends and neighbors often feel

and the distinct feeling my children look like beggars.

one lemonade stand per year is one too many for me

especially when my child has bamboozled the neighborhood.

Idiom

Nick: Will you cut this mustache out for me?

Me: It's 8:40 bud. It's time to go to school.

Matt: He asked me to draw a mustache on him last night. I think he needs one for class.

Nick: I do. And I need something for show and tell too.

Silly Mustache Day

I think it's fitting

that the one

who gave us

two minutes notice

has to wear the final product

and THAT'S having egg on your face.