Angels, Devils and Snickers Bars

It is Halloween and in a few hours our street will be filled with ballerinas and superheroes of all sizes rushing from house to house on a singular mission to fill their little plastic pumpkins with more sugar filled treats than can possibly be consumed by one little person.

 It is by far Scotty's favorite holiday and for the last twelve years his costume of choice has been a vampire.  No longer interested in pursuing the inevitable sugar rush, our little vampire is now content to sit in the driveway and hand out candy to all the little monsters who dare approach.

We have no idea where his fascination with vampires came from, but he cannot be talked into anything else.  So every year we apply the makeup that for a few hours transforms his face and alters his personality.

 















It seems like Halloween costumes come in two varieties...sweet, adorable and angelic or scary, horrifying and devilish.  Around our house it is  like Halloween everyday. On any given day, hour or minute our Scotty can quickly change from an angel to a devil and then back again!  We never know who might be lurking just beneath the surface of that beautiful face mask he wears.

Angelman Syndrome is named for  Harry Angelman, a pediatrician who first identified the syndrome. (Harry Angelman)  Therefore these children are often referred to as angels.  The word angel brings to mind all sorts of heavenly blessed images and this is how our children are perceived.  However, it seems many of Harry's angels, my son included, have moments when the word angel would be the very last word that would describe them.

Recently, I was so saddened by some chatter in the facebookisphere.  The chatter surrounded a comment that was posted admonishing those who dared to write what I am assuming to be an honest comment about how difficult their angel can be.  It felt like a hand slap that was meant to hurt and to shame...what struck me the most was that all the comments were written by people, who like us, are living their life with an angel.

Certainly this is most likely one of those "mind my own business" moments, but it has been weighing on my heart and I decided I couldn't let this one go.

What astounds me the most is that the majority agreed wholeheartedly with the poster. I contemplated posting a comment, but felt sure in doing so that I would have released an avalanche of fire and brimstone on my head in such a public forum. I fully expect that to happen anyway, but I am okay with that.

I don't know who the comment was meant for specifically or the circumstances, but I do know that many people who read it will now no longer will feel comfortable sharing their journey with a group of people who they once felt safe with.  I find it shocking that such hurtful comments would come from a group of people that you would think would always have your back...people who are fighting the same fight.

Many families, like ours, have angels who have many autistic characteristics and SEVERE behavior issues...and they don't sleep. We do everything in our power every single day, usually functioning on a scant few hours of sleep, to help them with self control and to minimize their frustration.

At times our lives are much like living in a war zone and we need others who understand to help us soldier on to fight another day.  I personally have gotten hit in the face five times today by my son...a twenty-five year old man who I love with ALL my heart.  It hurt my face and it hurt my feelings. And this was a good day. Our days are spent walking on eggshells waiting for the next event that will shatter the peace and quiet of our homes. Those who have not experienced this cannot even begin to imagine what it is like.

I am so blessed to have a wonderful husband, a supportive family and a huge circle of friends to help us manage our sometimes unmanageable life.  I know so many parents who are handling this without any support at all...I can't imagine what their life must be like and my heart goes out to them.

It is not our place to judge others until we have 

walked  a few miles in their shoes.
It is wrong...

And it is hurtful.

We do believe that Scotty is a blessing from God and we honor that every single day, but it doesn't make it any less difficult.  I also believe that it is our duty to encourage and lift one another up instead of shaming and humiliating those who need our help and encouragement.

Maybe...just maybe...a comment that sounded like 

a complaint was really nothing more than a cry for help.

A soft answer turns away wrath, 

but a harsh word stirs up anger. 

Proverbs 15:1

Happy Halloween

Perks of Living with an Angel

And even if somebody else has it much worse, 

that doesn't really change the fact 

that you have what you have. 

Good and bad.

Perks of Being a Wallflower

Stephen Chbosky

This post has absolutely nothing to do with the book/movie Perks of Being a Wallflower, but the title lends itself to reflection.  I suppose that every situation, good or bad, comes with some perks...we just need to acknowledge them and give value to them.

Living with an angel is much like being a wallflower...it has forced us to live on the sidelines of life.  Certainly we participate in all the ways that we can, but it is always around the perimeter...up against a wall and close to an exit. Close enough to delude ourselves into believing that we are a part of the frenetic flow of the rest of the world.

In reality we are not participants. 

We are merely observers.  

We never get to sit at the cool kids table.

We are the outsiders.

So I decided to compile a list of 

the perks that come from living with our angel.

**Leave a comment below to add to the list!

1. Scotty has always been my get out of jail free card.  Spaghetti dinners, car washes, bake sales, cleaning up trash along the highway....Hmmmm, Gee I would really like to help, but I need to be home with Scotty. (My secret is out!)

2.  He has slowed us down and kept us from rushing through our life.

3.  His level of enthusiasm in any given situation is exactly the same.  A hamburger or a trip to Disneyland causes  him to jump for joy in celebration!

4.  He still believes in Santa Claus.

5.  He has shown us what it feels like to be really and truly unconditionally loved.

6.  His  smiles and belly laughs emanate pure joy.

7.  He has taught us to believe in miracles.

8. He has taught us to run our best race even though we can't see the finish line

9. He has shown us that life is not about waiting for the storm to pass...It's about learning to dance in the rain. ( I don't know who wrote this, but I love it♥)

 10.  I have been waiting to use this next one for awhile.  It was a comment on one of my posts.  It is from a young man named Scott whose brother Daniel (age 36) has Angelman Syndrome.  I thought it was so beautiful and so well said...

 " I think that, along with the "not growing up" part of AS, 

comes a feeling that a memory of something that

 happened years ago could have happened yesterday. 

 Our grandfather passed away about 20 years ago, 

but when my brother
Daniel sees him in photos or old videotapes, 

he most certainly recognizes who Grandpa is. 

 Living a "Groundhog Day" kind of life doesn't only mean 

that today is always the same, 

but the past is never more than a day away either."  

 10.  And last but not least our Scotty has taught us to appreciate the hilarity of a whoopie cushion...

Update:  Scotty is still doing well off his medication.  He still has the same behaviors he has always had...hitting, pinching, banging, throwing and hair pulling...but they are SO MUCH less intense and he is easily redirected.  For example, if he pulls my hair I say, "Oh is mommy's hair soft?  Does it smell good I just washed it?"  He will giggle, smell my hair and go about his business.  Today he stood in front of a basket of toys and put his hand out like he was going to push it off.  I gave him the tiniest head nod to say no and he smiled at me and walked away. He also picked up a DVD with the intention to throw it but instead he laid it gently on the floor instead...what a character!

♥Keep the prayers coming♥

 

This App is called Touch & Say.

Scotty loves it.

 It repeats back sounds and words in a silly voice.

Scotty loves it...AND IT IS FREE!

Expecting/Demanding Miracles

"So I say to you, ask, and it will be given to you; 

seek, and you will find; knock, and it will be opened to you.

Luke 11:9

...So I am asking...I am seeking...and I am knocking! We are going to need all the prayers we can get as we have made the very scary decision to take Scotty off all his behavior medications and see what happens. He has been on a long list of medications over the last 14 years, many of which have had side effects that are much worse than the behaviors themselves.  Currently he was experiencing seven of the severe side effects listed for his current medication Serequel XR: aggressiveness, agitation, exaggerated happiness, restlessness, tremor, trouble walking, uncontrollable arm and leg movement and twitching of face and tongue.

It is said that a picture is worth a thousand words and I am too exhausted and too befuddled to string together enough words to constitute a coherent blog post this week.  Instead I will let the following pictures and videos speak for themselves.

14 Days Ago

Began the process of weaning Scotty off medication.

His reign of terror begins...

Yes that is a giant hole in my wall...

He was so exhausted that he covered himself up with his weighted
blanket and promptly fell asleep.
(This is no easy task because it weighs at least 25 pounds)

9 Days Ago

Medication decreased by half

This lasted about 2 hours.

What I didn't capture was him Incredible "Hulking"
the furniture onto the lawn...
Heavy wrought iron furniture hurled
through the air with super human strength.
Notice how he looks right at me each time...stinker!
Quite the spectacle.

As I sat in my front yard holding ice on my bruised nose and watched horrified as Scotty lost complete control of his senses for all the world to see... I realized I was completely helpless to stop this without getting injured again.  It was in that moment my prayers changed from the usually wimpy ones that always start out with, " Dear God, If you're not too busy... or... Dear God, I know my problems are smaller than most but if it is not too much trouble...or my personal favorite...I know in the big picture my problems are insignificant but..." changed to the following very bossy litany of demands.

Dear God,

Take away ALL Scotty's
aggressive and  angry behavior....forever.

Make him compliant and happy and easily satisfied.
Enable him to communicate his needs and wants appropriately.
Enable him to take care of his own basic needs.
Put a smile on his face and joy in his heart.
Grant him sleep.
Grant him contentment.
Grant him speech.

Let him embrace and welcome everyone who wants to

help him and take care of him.
I want a miracle

TODAY!

In Your name I pray

Amen

♥

Yes, I spoke to God in SHOUTY capitals and I am not proud of that, but I was a desperate mom demanding a miracle for my son...he needed it...we all needed it.

5 Days Ago

Medication stopped

Uneaten lunch...never a good sign.

Followed by 24 hours of throwing up. 

And insomnia that resulted in three consecutive all-nighters.
We don't know if this was withdrawl or a virus.

Now

No medication

His he is calm and compliant and he is
happy...so, so, so happy!

An almost eerie Twilight Zonesque sense of 

peace has settled over  the Baston household.

We would appreciate all prayers
(bossy or otherwise) directed towards this boy
as his body and spirit heal from all
he has been through.
Pray that happy Scotty is here to stay.

God sends me a message everyday. 
 Here was my message for today!

On this day of your life, Joanne, we believe God wants you to know ... that you only need to Ask.

God is waiting for your Asking, waiting to reach out to you.

...And ask I will!

Philippians 4:6-7
"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."
Read more at Buzzle: http://www.buzzle.com/articles/good-bible-verses.html

Philippians 4:6-7
"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."
Read more at Buzzle: http://www.buzzle.com/articles/good-bible-verses.html

I'm Gonna Need a New Pair of Shoes

This post will be less bloggy and more contemplative than most as I have had lots of "thinking" time this week while waiting for tantrums to subside or sitting in complete silence  hoping to calm my very agitated son. Damn medication...damn Angelman Syndrome....damn, damn, damn it all.

In one of my moments of silence I finished reading a book by Carolyn Custis  James, When Life and Beliefs Collide.  I have read several of her books and highly recommend all of them.

This particular book speaks to the individual paths we are all on.  A path that has been chosen and mapped out just for us. 

 

...And let us run with endurance the race that is set before us, 

fixing our eyes on Jesus...

Hebrews 12 1-2

She states, " God has planned our race....Nothing - not principalities or powers, not the devil himself, not even we-can throw God  off his plan or prevent him from accomplishing his good purposes for us.  We run a planned race."

She also reminds us that God only has one plan...there is no Plan B for all of us there is only Plan A. 

Ironically, I read this part on the El from O'Hare airport on my way to my daughter's apartment.  I sat staring out the window as I tried to absorb the meaning and make some sense of it in my own life.  At the next stop a woman boarded the train and sat across from me.  Her clothes were torn, filthy and several sizes too small as were her shoes and God bless her she smelled horrible.  If that was not bad enough she was picking "things" out of her hair and throwing the "things"  on the floor all while having a conversation with someone only she could see.

As I sat observing her, my thoughts shifted from my own self analysis to her circumstances and I attempted to reconcile this woman's pitiful existence with what I had just read.  I could not then, or even now months later, even begin to formulate any kind of rational connection between my loving God and this poor lost soul sitting across from me. 

How could this be the race that God has planned just for her?

I could see the looks of disgust on the faces of those around her, not on every face, but certainly on most.  She was running her race and I was running mine and for some reason as part of God's plan A our routes intersected for about fifteen minutes on a specific Tuesday afternoon in September.  I have said many times before that I believe God places people in our paths at a particular time and place.  They are there for a very specific reason.  

I think of her often and wonder why our paths crossed that day.

Perhaps, I needed to be reminded that each person's race is not easier or harder than mine. 

Perhaps I needed to be reminded that even though my race is long and it is arduous that I have my husband, my children, my family and my friends to hold my hand and encourage me when I can't seem to take another step.

Perhaps I needed to feel a deep compassion for someone else's race in order to see my own race more clearly.

Perhaps I needed to remember this woman and her circumstances on terrible day like today...a day that is ending with me holding an ice pack on my bruised nose because I foolishly thought I could comfort my usually sweet boy as he battled the effects of his medication.

Perhaps these are all very shaky hypotheses. 

I am positive that this race I am running is not a sprint...it is a marathon and I don't know if I will ever see the end or cross the finish line, but I do know this for certain...

I'm gonna need a new pair of shoes!

I am a runner.

I run in rain or shine.

Night or darkness.

I run until I cry, collapse, or until I feel like I cannot go on.

And then I run another mile.

Because I am a runner.

I am unstoppable, unbeatable, untouchable.

(I don't know who wrote this but it seemed fitting)