Even If...

As I process having cancer and the gamut of emotions I've experienced in the last month, it's made me even more aware of how Boy Wonder processes life.

Cancer is a scary word. It makes one stop and reflect on the brevity of life: every breath is a gift, every moment a memory. There is much hope in a good doctor, in medical technologies, in advanced medication. My doctor is confident that within 6 months to a year, my life will return to normal.

Not so for Boy Wonder.
FASD is permanent.
There is no good doctor. There is no medical technology to assist him. There is no advanced medication to heal him. FASD is life long.  FASD is his normal. 

FASD is an invisible disability. Invisible to the world... but not to him. Not to us. We clearly see his struggles every day. Every single day of his life he wakes up to face so many hurdles, including proprioceptive dysfunction and tactile dysfunction.

Every day his senses are assaulted by aromas of the cafeteria colliding with the smells of lotions & bodies in the hallways; his ears ring with the vibrations of pencils scratching on paper and the cacophony of voices blending with the slamming of lockers; his skin receptors yearn to feel the pressure of a friendly hug or high five, yet he's prohibited from touching other students lest he trigger a harassment charge from a politically correct public school system.  It takes him minutes and hours to process questions and expectations, but in a world that runs on instant gratification it is impossible for him to keep up. 

He lives for days at the ocean where the salty air calms his mind and his constant whistling bothers no one as its carried away on the ocean winds. He longs to be buried in a cocoon of sand, slathered from head to toe, every inch of his skin blissfully covered with the tiny granuals of warm sand.  At home, his fight or flight reflexes never rest; he is always on edge, jumpy and easily frightened. On the sprawling expanse of the coastline there are wide open spaces to run and roll, to squeal and whistle, to let his fear and anxiety roll out with the tide.

So as I prepare for surgery to take me on a journey of healing, my heart goes out to this amazing kid of mine who will most likely never find complete healing in this life. He is the true warrior. I am learning from him.

Even If (by Mercy Me)

They say it only takes a little faith
To move a mountain
Good thing
A little faith is all I have right now
But God, when You choose
To leave mountains unmovable
Give me the strength to be able to sing
It is well with my soul

I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You'd just say the word
But even if You don't
My hope is You alone

You've been faithful, You've been good
All of my days
Jesus, I will cling to You
Come what may
‘Cause I know You're able
I know You can

Longing and Gratitude

Since the day I first watched this brief video it has been embedded in my mind. The simple, yet utterly profound, words of this young man living with Cerebral Palsy (CP) have been pondered in my heart over and over.

My child does not live with CP, however, I would dare to say my Boy Wonder, who has FASD & Autism, experiences so many of the same feelings as Roger Flournoy, Jr. when he stated: 

"I want to be everybody's friends and that hurts me because I can't help the fact that I have CP".

Boy Wonder is one of the most handsome young men you will see, therefore, the expectation is that he is typical. However, place him in his peer group and watch as the FASD unfolds itself in his dysmature behavior and social dysfunction.  He did nothing to deserve FASD, and there is no cure for FASD. He will struggle his entire life with the hurt feelings of rejection because of a  neurological disability.

You may not realize that CP and Down-syndrome are visible disabilities that often cause people to shy away because they don't know how to respond to the physical differences they see in someone.

While Fetal Alcohol Spectrum Disorders and Autism/Aspbergers are invisible disabilities that often cause people to shy away because they don't know how to respond to the emotional differences they see in someone.

All of these often lead to the same core feelings for our kids: loneliness.

“The hardest thing is loneliness. I am my own greatest enemy when I am left to my loneliness.” Roger

My heart weeps when I hear those words! For Roger, for my neuro-typical son, for those who are non-verbal, for all the thousands of kiddos living with FASD.  The loneliness is so real.

Spoiler alert: the wisest words on this 4 minute video are these, "Jesus paid the ultimate price and if I don’t totally worship him it’s like I don’t appreciate him dying for me."  Roger Flournoy Jr

Those are the words I have pondered over and over in my heart the past few days.  Oh, that I would have the simple, deep joy of this young man living his entire life with CP!  Even with his disability, even in his loneliness, he is choosing to be filled with joy that can't be shaken. Gratitude. Overwhelming gratitude.

I hope you will take the time to watch his story unfold and allow his words reflecting the peace and power of Jesus Christ, to fill your soul with gratitude as well.

So near to God

This is a first for me: I'm not prepping dinner. I'm writing this as my boys help my husband grill a special meal for me in honor of Mothers Day. I've turned up Spotify and am tuning out the minor bickering and choosing to be grateful for the messy-kitchen-spills, a result of their gracious attempts at a fancy meal prepared with love. My children are far from perfect - - which is fine, because so am I!  Yet, I take time today to be thankful for each of their precious lives. Both children born in my prayers and heart long before they entered my life. Both children held so near to God before they were held in my arms.

I'm thankful for each of their unique personalities, about as polar opposite as two brothers could be. I'm thankful for their silliness and laughter and constant chatter. I'm learning to be thankful for burps and body noises because it means they are healthy enough to be rambunctious. I'm thankful for stinky, sweaty socks because it means they played hard and exercised their bodies. I'm thankful for dirty dishes piled up in the sink because it means our bellies are full and content with plenty.

I'm learning to be thankful for disability because it has taught me that I can do nothing on my own, but all things through Christ. I'm thankful for disability because it opened up a new world of friendship with some spectacularly awesome families I would otherwise not have taken interest in. (Shame on me!)

I'm thankful for the wisdom and truth that God gives me on this journey. I'm thankful that every human being - - from the developing babe in the womb with Trisomy 18;  the non-verbal one with autism longing to express themselves; the orphan in Nepal who is frightened;  the beggar under the Portland bridge seeking hope; the one who is wheelchair bound craving legs to run; whether their skin be red, brown, yellow, black or white- - every person created has value in the eyes of God!

Here's a wonderful quote to remind us to dwell on the beauty of that truth:

“If man really is fashioned, more than anything else, in the image of God, then clearly it follows that there is nothing on earth so near to God as a human being. The conclusion is inescapable, that to be in the presence of even the meanest, lowest, most repulsive specimen of humanity of the world is still to be closer to God than when looking up into a starry sky or at a beautiful sunset. Certainly that is why there is nothing in the new testament about beautiful sunsets.- Mike Mason -Author of "The Mystery of Marriage”

A Season of Hope

I’ve had a favorite Christmas ornament for 13 years. This intricately hand painted scene of Salzburg, Austria on fragile blown glass has traveled the hills of Austria, into Germany, across oceans, through TSA gestapo and the rough hands of movers tossing boxes across 3,000 miles of America. It’s hung gracefully on my tree for 13 years in 5 different houses. Each Christmas as I’ve unpacked and repacked it with care, I’ve told my children the adventure and joy it signifies, a reminder of a beautiful trip with my husband exploring the grandeur of a land dear to us. I’ve told them of the market stalls and grand cathedrals, of the castles and music, of the people and friends that are etched in my memory.

This year I kneel on the floor, my hands shaking, my eyes so blurred I can scarcely see the shattered pieces of tiny glass. While tears stream down my face, Boy Wonder sits in the other room sobbing, knowing that this time he went much too far. It is by no means the first lovely sentimental item he has destroyed. Yet this time, I am so filled with sadness and regret I cannot go near him. My frustration of all he has done this week, culminated in anger at the sight of glass scattered under the tree, the result of direct disobedience and impulsiveness on his part. He squeezed the glass until it shattered... compressing my patience right along with the glass.

My emotions too raw, I order him out of the room. I am repulsed by the sight of him: of his increasingly selfish behavior the past months, of his greediness, of his unending want, of his constant focus on himself, of his meltdowns when he doesn’t get his own way. 

He cries now only because he fears a consequence, not out of sorrow for hurting another. As with most people affected by FASD... he just doesn’t get it. He has no comprehension this ornament is irreplaceable. He doesn’t appreciate the value. He doesn’t have compassion for others. Still my hurt, my anger rages deep inside me and overflows from my wicked tongue to pierce him with my words.

As I sit with tears streaming, softly mixing with remnants of glass in my broken pile, waiting to be cast forever into the rubbish heap, the irony of the beautiful tree and the bright crimson embroidered “Peace on Earth” tree skirt suddenly flood my soul.  Sobs rack my body as I see the brokenness it all portrays.

Such is life with disability: the perfect ornament we want the world to see, a shattered family painted inside, a fragile child hanging in the balance. I reach up to gently unhook the rest of the glass still attached to the tree. I find another thin shard of painted glass resting in the evergreen bough. I am overcome with emotion.

Is this not the reason God sent the Messiah to us one Christmas season so long ago: to sweep up the pieces of His beautiful world that man has shattered. To heal wounded, fragile souls. We took His delicate, hand-painted world and slowly compressed the beauty of His creation with the sin in our hearts: our gluttony, our greed, our sexual preferences, our self-sufficiency, our idols. Until one day the glass could no longer withstand the pressure -- sin shattered our souls into hundreds of tiny pieces, the only hope of rescue being a Savior. And in the fulness of time: Jesus, the Messiah, the Son of God come to earth as a son of man.  He came in such a fragile form, creating the very womb that gave him life! It is too much for me to comprehend. This grace extended to me. This reconciliation of man to God via a crimson stained Savior.

I’m still shaken as the day passes. I am saddened by what cannot be replaced. More than grieving the temporary beauty of the ornament, I grieve the loss of the things Boy Wonder does not comprehend: of emotions and empathizes that are foreign to him. Yet the crimson words of "Peace on Earth" ring in my mind and I find solace in the eternal beauty of this season... knowing in the Messiah there is found everlasting hope for the parent, for the child, for the family exhausted by disability. I close my eyes at the end of a long day and rest in the promise of peace on this journey.

My heart kneels as I ask for more grace.

Immanuel has come: God with us.

I Slipped

It was one of those afternoons, Dear Hubby was out of town on business again, (which of course, involves dining & wining others a concept I’ve all but forgotten), as I’m at home learning how to eliminate 54 foods (favorite foods!) from Rock Star's diet. It was raining again still; PMS was on its way. Boy Wonder had completely smashed his glasses in anger at school just a couple hours prior; I had somehow managed to not blow my temper in the car when I saw what was left of his glasses and read the letter from the teacher describing what happened - especially since this was the second time in the past 10 days he’d broken them.

I had maintained my cool; I was inhaling deeply and exhaling a prayer. The ever fragile time-bomb, otherwise known to disability parents as the hours between 4 and 7 pm, slowly ticked away.  As I went to transfer the laundry from the washer to the dryer, I realized Boy Wonder had been suspiciously silent for the past 10 minutes, so I stepped out of the mud room to investigate, which made me remember I should pull some frozen meat out of the garage fridge for dinner tomorrow, but then, out of the corner of my eye, I saw the dog following me to the garage and realized it was time for him to go potty, just then I heard Boy Wonder yell for me from the back patio, so I spun around to head back up the mud room steps when it happened: I slipped.

And I went down in searing, instantaneous pain. It hurt. Everywhere: my shin, my knee, my hip, my elbow, my broken fingernail. How I managed to not leave a blue-streak longer than any Ralphies father had hanging over Lake Michigan, I will never know. It hurt that bad!

The noises continued whirling: the barking of the dog terrorizing the neighbors cat, Boy Wonder asking ‘where are you mom?’, Rock Star wanting homework assistance, my phone dinging, the dryer buzzing.  Still I sat on the floor in the mud room, allowing the tears to fall freely. I was in pain and I did not want to move.   I just wanted someone to come rescue me, someone to tell me to go lie down, someone to bandage me.

When it crosses my mind: “Isn’t this just like the journey of raising a child with disabilities?”

How often I slip as a parent!  I am not perfect and this road is full of twists and turns and slippery slopes. Over-exhaustion causes me to be short-tempered with my spouse. Frustration of always being needed causes me to speak in unnecessarily harsh tones to my children. The pressure of needing to maintain a clean diet depletes much of the joy of cooking. Endless therapy appointments prevent me from having “me” time. Unpredictable and unexpected illnesses cause me to break my rare social dates with friends. And once again, I feel myself tumble down.

Each slip, causes another bruise.
Each fall brings a bit sharper pain than the last slip.
It is often a solitary journey- this life with disability - to slip and find no one there to lend a hand.

Yet on the hard, cold cement floor of the mud-room, nursing my already-turning black & blue bruise, breathing in and out, I hear the gentle voice of God whisper to me through all the noise: “Encourage the exhausted and strengthen the feeble. Say to those with anxious hearts, ‘Take courage, fear not…your God will come’.”  Isaiah 35:3-4

It is in this unexpected slip I am reminded that I MUST schedule quiet time into my calendar. I MUST guard my alone-with-God-morning and treat it more precious than coffee time with a treasured girlfriend. I MUST pencil a technology-free block of time into the start of my week, without fail. I MUSt follow the example of my Jesus who often withdrew from the crowds and went away to pray. For when I neglect this sacred time…I slip.

Soothing words for my aching wound flow from the One who comes alongside me on this journey:

If the Lord had not been my help,
    my soul would soon have lived in the land of silence.When I thought, “My foot slips,”
    your steadfast love, O Lord, held me up.When the cares of my heart are many,
    your consolations cheer my soul.
Psalm 94:17-19 ESV

Through his Eyes

I watch from my window as the snow falls. Last winter, this snow was a normal, weekly occurrence in our lives; this year we are living thousands of miles away, in a land that rarely sees snow, and has now declared a state of emergency (no, literally, they have!) because there is almost 4 inches of snow.  Now the neighborhood kids have gathered in our cul-de-sac, right across from our house, the location of the steepest driveway, now turned sledding hill.

Some of the boys walked by and my son, Snow Boy, like most tween boys, thought it would be fun to throw a snowball --  after all, eating snow & throwing snow are his most favorite winter sports! The other boys threw back. Snow Boy threw again, but managed to splatter ice into one of the younger boys eye. Unintentionally. The neighbor boy cried. Hysterically cried.

Snow Boy threw more at the other kids, even though they said stop. They told him to go away. He laughed and ran right into the midst of them. The little boy went across the street to tell his mom - which, of course, triggered the reaction in Snow Boy that it was now time to flee.

I hear my son yelling "cry baby" and "you liar, you said you'd play".  I go out to calm him, and try to explain to the other boys that when you ask him to play, he is going to play. Continually play. He will not stop just because you say stop; you may be tired, but he is just getting into it.

In the meantime, my Snow Boy continues screaming to the other kids, "you lied! you lied! you said you'd play! you're a cry baby." I firmly tell him while giving him the mommy-evil-eye, "shut your mouth now and walk away”.  I make sure the other boy is ok; the neighbor mom comes out and say's ..."its fine, it happens in the snow, just be careful when you throw snow." She is not upset. The neighbor has no visible evidence of injury on his face.

I take my Snow Boy inside. He has melted into tears. I sit across the table from my son, trying to be patient, trying to help him calm his body, attempting to have a rational discussion, trying to grasp for the words that will make a connection with him. He sits there with eyes red, a blotchy, puffy face swollen from tears mingled with a runny nose, hiccuping as he tries to tell me about it.

What do you do when you realize your kid has been labeled by the other kids as the neighborhood bully?

I talk. He cries.

He talks. I listen.

My words are empty to him. He doesn't get it.  In his mind, this is black & white: “There is snow, I like to throw snow, everyone must like to throw snow. Getting hit in the face with snow doesn't bother me, it must not bother anyone. I have a high pain tolerance; everyone must have a high pain tolerance”.

I try to help him understand that when he sees someone crying, he should stop and ask if they are hurt. I explain that when someone is crying, he should stop and say "I'm sorry it was an accident, are you ok?".  Instead he laughs and throws again, oblivious to their pain.

My heart aches for him.

I see the intense pain in his eyes, as he truly does not understand why the kids are angry at him. He truly doesn't know why they won't play with him. I gently try to be honest and point out to him the difference in his actions and theirs. It’s not making a connection with him.  He just wants to play; he longs for a friend.

This boy. This FASD. This enigma. My soul pleads for answers, for breakthroughs in communication. I want to scream to the world: My son is not mean! My son is not an angry boy! My son is most definitely not a bully!

But all the world can see is the boy who has thrown rocks, the boy who has whacked others with a stick, the boy who has yelled names, the boy who shoves, the boys who throws snowballs, the boy who is different. The neighborhood bully.

They don't see through his eyes.

Through his eyes: he whacked because you all had light-sabers (sticks) and he wanted one too...only his pain tolerance is incredibly high, so getting whacked with a stick is all part of the game if you want to be a Jedi...in his eyes.

Through his eyes: he called you a name because you said something off handed in sarcasm or a joke. He only thinks in black and white, in the present, in his eyes.

Through his eyes: you had the football and it was his job as the defense to do whatever it takes to get the ball to his team....even if that is taking you down. It doesn't matter that this is Nerf football and you are 4 years younger than him.

What I see in his eyes as I sit across the table is a tender-hearted little boy in the body of a tween, who feels alone and ostracized from everyone else. I see a child who doesn't understand why all the kids, of all ages, want to play with his younger sibling, but not with him. I see rejection and confusion.  And I want to shelter and protect.

I sigh again. I plead silently for words to comfort and ease his pain.

I open my arms and hold him on my lap, rocking with him in a warm embrace.  It is enough to help him through this moment. It is enough grace for now. Still, I pray without ceasing that someday others will see through his eyes.

What I Know

I write not because I have the cure or the answers.
I write because it is all I know.

I know my son does not understand his FASD. And what he does understand he does not like.
He is frustrated with himself and with the crazy stimuli of this world constantly bombarding him.

Why him?
And why me for his mother? Who am I?
I am not wealthy: I cannot pour money into a cause like Donald Trump, Bono or Jenny McCarthy.
I do not have the clout of Oprah.
Nor the knowledge of Diane Malbin.

I am me.
Middle class, average mom.
Unorganized.
Easily distracted.
Anxious.

I know that God did not want his birthmother to drink and I know God did not want my son to have FASD…yet, I know that God chose to place this specific child, with his specific disabilities, into my family, as my son, so that I could learn patience.

So I would come to rely on God.

So I would take up the mantle of an Alcohol Related Neurological Disorder... that I would become passionate for a cause that I would otherwise view as an inconvenience and interruption… that I could educate those in my world of the life-long, incurable - -yet 100% preventable - - disability of FASD.

This I know. 

A Matter of Perspective

Three days ago I logged on to my MacJournal and wrote an entry about celebrating the 10 years of my Boy Wonders life. Reminiscing and laughing over all the precious moments we’ve shared with him.

Little did I know just a few short hours after writing that entry, I would be in a clinic listening to a doctor attempting to diagnosis my sons allergic reaction, telling myself to breathe calmly without panic, all the while mentally praying, begging God to spare Boy Wonders life. Nor did I realize that I would spend half of the next day, and the following, back at the clinic while my boy was being given an IV and heavy doses of antibiotics to aggressively combat the infection raging through his lymph nodes. All because of this little plant.

Oh how life changes so quickly.

Here I am 2 days later, biting my tongue, ready to send him to the woodshed and give him a smack on his rump, while he is screaming at the top of his lungs, melting down. He’s angry because something didn’t go his way; he’s frustrated he can’t get his air rocket out of a 75 foot tall pine tree. When I approach him while calling his name, he looks at me and blatantly ignores me as he angrily throws rocks at the street and treehouse. When I ask him to come in and calm down on the step, he stomps and screams and rips the ace-bandages and sling from his arm. When I ask him to move outside to the back porch step until he is calm, he rages and kicks all the patio furniture and rips his clothing. When I attempt to talk to him he screams at me in frustration.

Oh how life changes so quickly.

He’s on the back patio screaming; I’m in the kitchen fuming and talking to God… “Seriously God, I was begging and pleading with You just days ago to save this childs life. I went 3 nights with no sleep, constantly monitoring his breathing and temperature. For this?!? Really!?!“  A few other conversations raced through my mind while I was attempting to make a decent dinner for our family, get my husband ready to leave town, pay attention to lil brother…and now drop everything to deal with the hysteria of Boy Wonder who lost his toy rocket. Big sigh. Big complaints going through my head. Big sacrifices I make for this child. I don’t deserve this.

Then a still small voice from God whispered to me, “Wait a minute, dear girl, you're looking at this all wrong. Instead of rationalizing that three days ago you were begging for his life and now you're angry at him for throwing your plans out of sync again, you need to change your thoughts and have a new perspective.  You should be thinking, “I blessed you. I saved your sons life. Why are you pulling your hair out over this? I saved his life because I need you to guide him in the days ahead.  I need you to think eternally. This two hour long meltdown is just a small scene on the landscape canvas I’m painting of your son’s life. This too shall pass. Put your boots on: you're going in. This is a moment of grace and sacrificial love you are able to give to Boy Wonder. Don’t miss it.”

Oh how life changes so quickly.

I went to bed praying for a bigger perspective, for more grace, for deeper love, for a thankful heart to count my blessings while I have them.

A Mothers Prayer

Raising a child with disabilities can be so draining.  Can I just say those words to you who are on this journey with me...because I know you get it! You know I'm not complaining. You know that tired feeling when its only 9 am and you've already changed soiled sheets AND soiled clothes, had 3 melt-downs and spilt breakfast on the floor.

It was on one of "those" days that I flung myself into my worn red-leather rocker and open my Bible to Psalm 119 with a sigh and heavy heart.  I love when God pours water into my parched soul, flooding me with the relief I so deperately long for.  As I read these verses, they resonated so deeply in me as hope for my son filled my heart...

Psalm 119: 73-80 became my prayer:

Your hands have made me and fashioned me; give me understanding that I may learn your commandments.
Oh God, I pray that my son will know that God made him.... made him exactly like he is - disabilities and all!

Those who fear You shall see me and rejoice, because I have hoped in your word.
I pray that others would see God reflected in my son's life. That this boy would hope in God. Not in a cure. Not in therapy. Not in medication alone.  

I know O Lord that your rules are righteous and that in faithfulness you have afflicted me.
I pray that even when life is hard and consequences seem to overwhelm him.... when he feels like life is unfair and that he always has restrictions...even then that my son would know that God is fair.
That he would know that God has allowed this affliction - this horrible disability...and although I don't understand why, that this boy will trust that God is righteous and faithful!

Let your steadfast love comfort me according to your promise to your servant.
God, comfort my son! On all the long days when he is lonely, be his friend. On stressful days when he is confused, be his wisdom. On ordinary days when he is tempted in his innocence and ignorance, be his compass, be his conscious.  In moments of discouragement and frustration, be his steadfast love.

Let your mercy come to me that I may live; for your law is my delight.
Give my son mercy. Give him grace and strength for each new day! Let him look to You, God. Help me to help him hide Your word in his heart, that You would be his delight. In a confusing materialistic world, be his desire.

Let the insolent be put to shame because they have wronged me with falsehood; as for me, I will meditate on your precepts.
This is my prayer: that those who shun my child, those who prey on his ignorance and his innocence be put to shame.  Let those who tease him be punished.  Allow Your words to penetrate his mind so that he will meditate on Your truth.  May Your precepts give him courage.

Let those who fear you turn to me, that they may know your testimonies.
Most of all God, I pray that You will be glorified in his life. Let others see Grace & Hope when they see what this little boy has overcome.

May my heart be blameless in your statues, that I may not be put to shame
Keep this boy pure in heart and ever child like in his faith. Give my boy confidence in You that he may never feel ashamed.

Most of all, I pray that I,  as his parent --in my confusion, in my misunderstanding of his disability - would ever cause his heart to harden.   May I be faithful to follow your statues as I raise him. 

The Fingerprints of God

We had another one of those days: days when frustration and anger fill my child with rage at a disability he doesn’t understand.
Another day when he screams at me, “why do I have to have this disability?”.

The words quickly swell in my head… because a woman chose to drink while she was pregnant…because sin is rampant in this world…because we are living in a world that is not heaven.
But he’s too young for any of those logical, truthful answers.
My heart grieves for him. I don’t always understand the Fetal Alcohol either.

I know at this moment what he’s longing for is comfort for solace, for acceptance, for love.
So I hold him. I rock him close.
I cry with him and tell him I am so, so sorry.
I tell him I am on his team and we will fight through this unknown together.
And I whisper to him words from a song I love….

“Never has there been and never again
Will there be another you
Fashioned by God's hand
And perfectly planned
To be just who you are
And what He's been creating
Since the first beat of your heart
Is a living breathing priceless work of art and...

Just look at you
You're a wonder in the making
Oh, and God's not through, no
In fact, He's just getting started and…

I can see the fingerprints of God
When I look at you
I can see the fingerprints of God
And I know it's true
You're a masterpiece
That all creation quietly applauds
And you're covered with the fingerprints of God”

Thank you Steven Curtis Chapman for penning the words to Fingerprints of God from your heart so many years ago. My son finds solace through this music and for that, I am ever grateful.

Facing Our Fears

I am a good mother. I know I am. I may not be perfect, but I am a lioness where my cubs are concerned.

I can control what food goes into my shopping cart and therefore, what food goes into my childs body.

I can decide to which friends house I allow them go for play-dates, thus controlling what they are exposed to.

I choose whether or not to wake them early on a Sunday morning for church, thus I control whether or not they are influenced for good or evil.

I can choose whether to turn on or off the tv, the Wii and the iPod: thereby I control what type of media influences they are bombarded with.

I can choose whether or not to spend money at the movie theatre, so I control what their minds are exposed to at any given age.

I can choose to allow them to sleep in or to wake them a few minutes earlier to give us time to open Gods word at breakfast and learn without hurry together.

I choose school options of public, private or homeschool, and I can control what kind of education my children are given.

What I can’t control is their future.  

As a parent of a child with disabilities… that can be a very frightening thought.

After all, I am his advocate, his lifeline, the one who “gets him” without him having to explain, the one who is often able to predict how he is going to act/behave in a situation.

Which only leads to another terrifying thought:  What will happen to him if something happens to me?

Although I have walked in a relationship with Jesus Christ the past 30 years, my faith is tested in new ways each morning I awake to parent this amazing boy with needs so different that mine.  And so it is there, in those quiet hours before dawn as I pour out my fears and read Psalm 139 that God speaks to me in a gentle whisper:  “I created this baby boy. I took care of this precious little one in a womb where he was not wanted. I carried him safely from a sterile hospital to a cold, dark, dirty orphanage. I had my angels surrounding him for two years before I placed him in your care. Do not think for one moment that I will ever leave him. I will never forsake him. I will continue to provide for him whether or not you can.”

And with those words so eloquently penned by the Psalmist, the fears that attempt to strangle me are pushed back into the dark caverns from which they came and I am able to face another day of raising this special child.

Psalm 139… Good News Translation (GNT)

You created every part of me;
    you put me together in my mother's womb.
I praise you because you are to be feared;
    all you do is strange and wonderful.
    I know it with all my heart.
When my bones were being formed,
    carefully put together in my mother's womb,
when I was growing there in secret,
    you knew that I was there—
      you saw me before I was born.
The days allotted to me
    had all been recorded in your book,
    before any of them ever began.

T-minus 2 days

My lofty goal of writing a post a day hit the wall of reality: kids, meals, school, laundry, spouse, groceries.   I may have been slowed down, but I’m not done writing yet…there are 2 more days until Sept 9th.


Here’s FACT # 4

FASD causes underlying changes in brain structure and function resulting in primary and secondary behavioral changes. 

Following are a few of the behaviors FASD causes:

• A person with FASD often acts first and is then able to see the problem after the fact. 

Effect on child:  Doing the action - - throwing, hitting, peeing pants, lying, touch/grab things -- triggers their memory that it was an inappropriate action/behavior.

• A person with FASD often has memory impairment.

Effect on child: They are forgetful & needs frequent reminders.

• A person with FASD often has difficulty learning from past experiences - repeats the same mistake over and over again in spite of increased punishment.

Effect on child: They often do not even understand the punishment and rarely makes the connection between the violation and the consequence.

• A person with FASD often has difficulty with abstract concepts.

Effect on child: They do not visualize anything.

• A person with FASD often has difficulty understanding safety vs. danger, friend vs. stranger, or distinguishing fantasy from reality.

Effect on child:  They will believe anything & walk away with anyone who is kind to them.

•  A person with FASD often has difficulty forming links and associations, often unable to apply a learned rule in a new setting.

Effect on child: Understands no throwing on the playground; doesn’t apply it to the classroom.

• A person with FASD often repeats rules verbatim, then fails to apply the rules.

Effect on child: They can tell you what’s expected, they just can’t apply what’s expected, especially when over-stimulated and excited.

•  A person with FASD is often prone to confabulation and lying. Lying is to deliver a false statement to another person which the speaking person knows is not the whole truth, intentionally. In psychology, confabulation is the spontaneous narrative report of events that never happened.

Effect on child:  They will blend actual events with imagination and/or stories heard without understanding the ramifications of their confabulation. Other times, they will boldface lie just as a 4-year old child would.

• A person with FASD may talk excessively, yet is unable to engage in a meaningful exchange.

Effect on child:  They may be unable to express emotions and will most often laugh while being disciplined - - they are not being disrespectful, they are frustrated and unable to express it.

•  A person with FASD often has the inability to do more than one task at a time.

Effect on child:   Choose reading, playing, coloring, going to the bathroom, or eating.


Did you just read that entire list?  If so, thanks for tracking with me.

Now read it again. Slowly.

Imagine that all of those primary behaviors were going on in your brain. All at once.

Imagine how frustrated and confused and overwhelmed you would feel. All the time.

Imagine there being no medication to slow down any of these affects. None.

Imagine these behaviors lasting your entire life.

Welcome to the devastation caused by FASD. Welcome to the world of my child and thousands like him.  Now do you begin to understand why I am so passionate about educating everyone about the dangers of drinking any alcohol while pregnant?

Help spread the word and prevent another child from ever living with this disability! Please take the time to pass this blog post on to at least 1 of your friends, link it back to your blog, share it on Facebook, or tweet it on Twitter.

FASD Awareness Day: T-minus 6 days

Thanks for reading along with me as I journey to Fetal Alcohol Spectrum Disorders Day: September 9th.  There is so much I want to share...

Fact #3:

It takes children with FASD longer to grow up.


My child's greatest disadvantage is that he looks normal.  If you saw him on a playground, the first thing you would notice is that he is a very handsome boy. He is average weight and average height. He loves to laugh. He loves to run and play.

However, if you paused to observe him for longer than than 15 minutes you would soon change your opinion of him.  You would hear him babble with giddiness and excitement. You would see him appear to tease other kids.  You would watch him cut in line on the slide, throw sand in the air, pick up gum from under the teeter-totter to happily put in his mouth, and wander around talking to every stranger sitting on park benches. You would see him gravitate toward the younger children on the playground. You would see the mothers of those preschool children casting wary glances at a boy who looks so old wanting to play in the sandbox or on the baby swings. You would begin to think that he is obnoxious and unruly. You'd probably question his parents child-raising abilities. You'd find yourself wondering if he is spoiled and runs the household.  By now, you're most certainly irritated that he is annoying your child.

But here's the truth:  my son is dysmature, not immature.  Dysmaturity means a person is functioning at a younger developmental level where immaturity suggests the capacity to catch up with chronological age.  I really like this quote taken from Whitecrow Village website:

"The IQ of persons with FASD is most often within the normal range, yet they do not have the ability to meet many of society’s age based social and academic expectations.  Since FASD is usually not outwardly visible, the effects of dysmaturity on persons with FASD can be puzzling to themselves and to those around them."

For example, a child with FASD who is 7 often functions as a 3-5 year old would; a child with FASD who is 11 often functions between age 7-9.

So you see, my son is being socially appropriate at his younger developmental level.

To be honest, we have no idea how far my son will mature developmentally.  He may develop the same as other children, only at a slower pace (and yes... many 23 year old men act like 17 year old boys!)  or he may reach a developmental age and never move beyond.  Each day he wakes up and makes progress is a blessing we don't take for granted!

Please remember: Adjusting expectations to be developmentally appropriate will greatly help a child with FASD.    


If this post is your first exposure to one of the many life long disabilities caused by prenatal alcohol consumption, I hope you will contact me and let me know your thoughts.  As a mother of a child who will have life-long challenges I challenge you to have 0 drinks for 9 months. 

I hope my posts encourage many who are living with the realities of FASD, and educates many others who are new to the disability.

FASD Awareness Day: T-minus 7 days

Welcome to my second post about Fetal Alcohol Spectrum Disorders Awareness Day.

FASD FACT  #2:  
Prenatal alcohol exposure causes brain damage that affects behaviors, e.g., poor judgement, difficulty learning from experience and difficulty understanding consequences. 

FASD is most often an invisible physical disability. 

Here is a very insightful quote from the National Center for Biotechnology Information

"Prenatal alcohol exposure is known to disrupt many areas of brain development, including the cerebellum, hippocampus, basal ganglia, and the corpus callosum (Sowell et al, 2001; Mattson, Schoenfeld, and Riley, 1999). Other pathologic changes to the central nervous system include enlarged ventricles, abnormal neural/glial migration, and changes in the microvasculature in regions of the brain such as the cerebellum and hippocampus (Miller, 1992).

.... More likely, there will be identifiable patterns related to differential alcohol exposure (timing, amount, and frequency), combined with other genetic and environmental factors. These patterns may be reflective of general patterns of atypical prenatal brain development due to a combination of factors, and may not be specific to alcohol as a teratogen. However, some of the more commonly identified problem areas in FASD include attention, learning and memory, abstract problem solving and strategy generation. While individuals with FASD will often be within normal limits on measures of IQ, they often have other significant neurocognitive deficits. Many areas of cognitive functioning are only peripherally assessed through an IQ measure, such as attention and concentration. In addition, IQ testing does not assess other domains, such as higher order executive functions. These deficits will have a profound effect on the ability of a person with FASD to function, and without appropriate supports and interventions this can lead to secondary impairments."

So what does that mean in terms of parenting???

We have learned the importance of giving appropriate environmental accommodations -  no one would discipline a blind child for not reading the blackboard or expect a child in a wheelchair to run a marathon. FASD is an invisible physical disability.

It means no down-time as a parent.

It means constant supervision.

It means a whole new way of parenting - - far different from the way my parents raised me or my husbands parents raised him.  

The child needs a stable home: A healthy, processed food free diet. Structure. Routine. Boundaries.

It is 110% work to raise a child affected by Fetal Alcohol.  It is life long for the child.  It is life long for the parent raising the child.

Which is why I cannot say it too many times:  If a woman is of childbearing years she should avoid alcohol during the time she is ovulating and fertile for pregnancy.

It's that simple. Really.

Please pass this info on to others. 

From one parent to another: let's educate our communities and prevent another child from ever suffering this life-long disability.

FASD Awareness Day: T-minus 8 days

September 9th, Fetal Alcohol Spectrum Disorders Awareness Day is almost here, so I want to take the next 8 days to give you some startling facts about Fetal Alcohol.  My hope is to promote awareness and education which will enable change.  And change begins with me sharing with my family, with my friends, with my city, with my state, with my country and with the world. So here I go, sharing with YOU.  Please join my conversation...tell me what surprises you, what angers you, what frightens you about Fetal Alcohol Spectrum Disorder.

You can start by reading one of my archived posts which fills in the details as to why I started this blog last year.

Now on to the real purpose of this post:

FASD FACT  #1: 
According to the CDC 1 in 100 live births are affected by FASD in the US.  FASD is the leading cause of cognitive disability in Western Civilization...yet it is 100% preventable!

What this means is that you are surrounded by more children than you realize who are affected by FASD.  More babies are born with FAS, than with HIV or Autism or Downs Syndrome. 

Consider this interesting reality: children who are with biological families are diagnosed with ADHD, while children placed in foster or adoptive homes are diagnosed with FASD.  Our desire is not to criticize past mistakes, but to educate those we come in contact with to the fact that FASD is very prevalent right here in our own communities. In your neighborhood.  In your school district. In your state.

What grieves my heart the most? The fact that Fetal Alcohol Spectrum Disorder is absolutely, positively 100% preventable. 

As a mother who lives the rollercoaster of raising a child with FASD, here is my plea: If a woman is of childbearing years she should avoid alcohol during the time she is ovulating and fertile for pregnancy.

It's that simple. Really.

I know there are those who argue that "it's a woman's body and she has the right to do what she wants...and no one has the right to tell her not to drink."   Just for a moment, think about this...those same women avoid tuna and sushi because there might just possibly be a trace of mercury.  Or they willingly avoid caffeine.  Hmmmm.  Possibly a trace of mercury, so sushi is skipped?  Yet 100% positive for alcohol and "it's my body"?  I just don't get the validity of that argument.

Here's the deal with alcohol: it goes directly from the mama's lips, into her bloodstream and on into the amniotic sac where the developing baby's body is basically soaking in alcohol. 

Here's what the NCBI  says about it:
"Because the brain is constantly developing throughout gestation, the effects of prenatal alcohol exposure on the developing brain can occur at any point. Therefore, exposure at different times and with different doses during gestation may explain why FASD presents as a spectrum of central nervous system dysfunction. In addition, individual differences in the mother and child modify the effect of prenatal exposure in the individual, and not every child exposed is affected (Streissguth, 1997)."

So for the life long sake of your unborn child...just say no for 9 months. 0 drinks for 9 months.  It's really not asking for much.   Trust me on this one...the 9 months of no alcohol will be nothing compared to the frustrations that you will be avoiding for the rest of the child's life!!

Come back for more information tomorrow....

On Being Adequate

Are you the parent/caregiver of someone with disabilities? Some days it does feels hopeless. Some days are repetitively frustrating.  Some days are exhaustively exasperating. 

I love when I find “new” truths in God’s word. No matter how many times I read Scripture, it's awesome that I always stumble upon something that I’d overlooked in the past.

Take II Corinthians 3:4-6 for instance. “...such confidence we have through Christ toward God. Not that we are adequate in ourselves to consider anything as coming from ourselves, but our adequacy is from God, who also made us adequate a servants...”

Did God write that just for me, knowing that I would one day be a mom of a child with FASD?

Or did He write it for my son who has FASD?

I am NOT adequate in myself. I struggle daily asking God, “why me???”.

Not in a feeling sorry for myself kind of way, but in a sincere lack of self-confidence voice, being overwhelmed with the enormous, all-consuming responsibility that is involved in raising a child with FASD and disabilities.   Now I read these verses and it hits me: I don’t need to worry about it because I - in my own strength - am not adequate, nor will I ever be adequate.

BUT GOD. I love that phrase in scripture. BUT ...  It means, stop worrying and fretting because just ahead, in the next sentence, there will be an amazing unexplainable, almost incomprehensible truth, that will eliminate all need for doubt if it is just believed and acted upon. So take a deep breath at the “but” and read on….."but my adequacy is from God who also made me adequate as a servant”.

There it is, plain and simple, written forever in black and white. My adequacy is from God!

Therein lies my confidence. I can parent this child because God made me adequate.  And not only did He make me adequate, He specifically made me adequate as a servant.  The definition of  “servant” holds another one of those Greek mysteries which the English language has demolished. It does not mean servile as a slave, but voluntary as an attendant, a reference to the service or advantage rendered to another (as in menial tasks).

I’ve been pondering the implication of these verses for days. My role as the mother of a child with FASD and disabilities is so clearly defined in these verses.

Could there be a more accurate description of what a parent of a child with FASD does than act as an attendant and perform menial tasks. I think not. I am my son’s external brain! I daily assist him with the most menial tasks...
Yes, the underpants go on before the shorts. 
Yes, the milk always goes in the fridge.
Really! There is this thing in our house called a toilet.
No, you cannot play in the snow in just a swimsuit.

Are you the parent/caregiver of someone with disabilities? Some days it feels hopeless. Some days are repetitively frustrating.  Some days are exhaustively exasperating.

Be encouraged that your life is an “advantage rendered to another”. Yes, YOU are adequate to take care of your child! YOU are a blessing.

Find strength and meaning in this: “Not that we are adequate in ourselves to consider anything as coming from ourselves, but our adequacy is from God, who also made us adequate a servants...”

An Inconvenient Life

I read that if people with special needs were classified as a race, they would together be the largest unreached peoples in the world.  In my average size city there are at least 6 elementary schools, 3 middle schools and 3 high schools. Each of those public schools have a Life Skills class with approximately 10 kids full-time. That means that at a minimum there are 120 families with special needs and realistically twice that many families if all the kids on IEP’s, at all schools were counted. A low estimate is there are around 200 hundred families with no church loving them or supporting them emotionally…but there are over 81 churches listed in the public directory. Yet, sadly, not one of them is making an effort to reach this “people group”. These local churches are overlooking an enormous market right out their front window: families with special needs.

I know this for a fact because we have contacted many of them and specifically attended 4 of them with the hope they were interested in starting a disability outreach. The disappointment for us, is that they all talked about it from their mission statements and prayers and speeches: they want to embrace diversity and reach all people and be missionaries… yet in their efforts to reach the world they’ve stumbled over us at their doorstep and kept right on walking.

We have been an inconvenience to many churches; they honestly don’t know what to do with families like mine.

Being an inconvenience is something we have experienced in many places such as restaurants, social outings, birthday parties, classrooms, shops… but the church - - really, it just baffles my mind.  This is supposed to be a place of refuge, yet it is where we have experienced our deepest hurts. Over the years there have been two churches which we attended regularly but were eventually told, “unless you sit with your son in sunday school, he cannot come back.” Tears of disappointment mingle with righteous indignation as those words pierce my deepest soul. As acid poured on an open wound, the rawest pain was at both of those churches we counted the pastor and his wife as truly some of our dearest friends. And while it was not the pastor that asked us to leave, he did not make any effort to begin a disability ministry or intercede on our behalf. Pain does not go much deeper as we dishearteningly left those churches.

Hurt swells and rises in my throat when I know that I am not alone in my experience. If I dare to raise the subject to another family with special needs, I am met with tears of empathy. Why? Why must those who are different be an inconvenience?  Is not the church the safe haven, the hospital for the weak?

On Sunday mornings I wake up with dread. Should I take my child to Sunday School? Should I leave him with me in the service? Should we just stay home? Sunday mornings are an enormous hassle; it’s often not worth the frustration. Is it really worth the effort to go church, to sit with our bodies tense, our minds not relaxed for a nanosecond…waiting to hear the squeal of our child from down the hallway…knowing it is a matter of minutes until the flash of the beeper lights red…  cringing as our number is broadcast on the call box… getting an evil eye from those around us…letting out a deep sigh of discouragement as once again we are called upon to go retrieve our child.

My child needs care and attention 24/7. Twenty four hours a day, seven days a week I am called by God to care for and love my child and I do so willingly and without reserve. By the dawn of Sunday morning my soul is craving after God, my emotions are frazzled, I am on the verge of tears, my body is weary. I want to sit in a pew for 90 minutes and breathe in the sweet peace of the Holy Spirit reviving my parched soul. I want my spirit and heart encouraged and refreshed for a week ahead. I want to know that for 90 minutes I can sit calmly and soak in the truth of God, my mind at peace knowing my child is safe and loved in the same building. Why does the church not feel the cry of  families such as mine?

It grieves me deeply that as I interact with families of special needs all across the United States and beyond, I hear firsthand how many of them are angry at the church, how many of them have been rejected by the church, how many of them have been asked to leave a service. It is just so wrong on every level! Oh how the heart of God must be breaking for His precious children who are desperately craving connection, but are being brushed aside.

Clearly scripture says “Pure and undefiled religion before our God and Father is this: to look after orphans and widows in their distress”, and while the “disabled” are not specific in that clause, the heart of Jesus was indeed drawn towards this people group.  Read in the four gospels of Matthew, Mark, Luke and John how often Jesus healed one with seizures, one possessed in the mind, another broken in body or those overcome by physical disorder.  Where, I humbly ask is the heart of Jesus via the church for my child, for my family?

Oh Church, take off your “WWJD” bracelets and charms and look around you! Look out your rose colored windows and allow your eyes to linger on the hundreds of hurting families right in your neighborhood. Moms, dads, caregivers… craving a simple 90 minutes of peace and reflection and spiritual renewal. 

I promise the local church, if they would open their doors, their hearts, their arms to those with special needs, they would not even need pursue them - - families would flock to your church! Then those who know nothing of the saving grace of God, would see Him alive via the action of the church, and they would be unable to deny His love. And those who already know the One who loves without boundaries, would be encouraged and renewed each week!

Whether you read this as a family seeking 90 minutes of peace, or as a church member needing to offer hope… my prayer is that in my child’s lifetime this inconvenience will soon end and never again will a family leave a church feeling more discouraged than when they entered.

On Being a Lifeline

We floated the river this weekend as temps reached a scorching 91 degrees - which here in the high desert is HOT, HOT, HOT. As such we were joined by hundreds, honestly closer to a thousand or so of other like-minded, over-heated residents of this outdoor adventure community.

There were couples on air mattresses, grandmas in kayaks, rednecks soaking up skin cancer and lung cancer, SUP's a plenty and families on rafts roped to kids in tubes. The latter would include us: 1 large float tied to 2 smaller floats.

About halfway down the river, after being tugged on continually by my son and his rope, I looked at my husband and said ,"Just once in my life I’d like to float this river without having someone tied to me and constantly pulling me. I just want to relax and float free".

He laughed and replied," Ummm, sweetie, that's your life everyday isn't it."

An epiphany! Right there in the river surrounded by water, noise, sun and people.  Yes, that IS my life!

I am tied to my son.
There is no relaxing.  There is no free float.

Today on the float he hung on to my rope and wouldn't relax or let go for one moment. I did loose my cool with him after being tugged the wrong way one too many times: I threatened to untie the rope if he didn't stop.

And so it is in daily life.  He rarely let's me out of his sight without panicking. To go to school, yes. But for me to go on a date or overnight -- the rope just got jerked involuntarily out of his hand and he fights anyone or anything to regain control and reattach to me.

I realize that indeed he does need the rope attached to me for many safety reasons:  like having no judgment. None. Zero discernment. No ability to differentiate between a stranger and a friend. Not being able to learn from a mistake -- YES fire always burns, NO you cannot eat the dog food or drink from the toilet, NO you cannot walk in front of a speeding car or swing or bike.

I try so hard to be his lifeline and give him the security he needs.  But I do loose my cool.  There are days when I just want to yell at him, "what is wrong with you??? Argh!! Why can't you just cooperate for one afternoon? Is that really so much to ask?"


I know the answer even before the thought or words flow from my tongue.  I need to remind myself that he is developmentally 4 or 5 years younger than his chronological age. His disabilities are invisible, yet oh so very, very real!  He is so handsome, he looks so innocent and "normal". He has no outward signs of FASD. Sometimes I think I need to make him wear a t-shirt emblazoned with the message " Be patient with me I have FASD".

Even on long hot summer days it's good that God gave me such a patient and amazing husband to gently make me aware of the importance, the high calling of being a lifeline, the reality of being tied to someone who so desperately needs me to be there for him.

I think I'll go make a rope bracelet as a reminder.

He knows the way

This journey on the unknown highway of FASD has been an unplanned adventure: it wasn’t written on my heart or in my journals.

I simply do not understand FASD.

This Spectrum Disability encompasses so many variables it is mind boggling.  While there is much information on what FASD is, how to prevent FASD, statistics scary enough to chill the heart of every parent... there really isn't much at all written along the lines of hope for a parent of a child with FASD.

Truth is a parent is always a parent, no matter what age their child has matured to. A parent always looks at their child as their child.  For parents who are raising children with FASD the truth goes even deeper: odds are very high that our FASD child will remain somewhat child like their entire life, not figuratively in a mothers heart, but literally so.

Leading child “experts” such as Michael Thompson, James Dobson, Kevin Leman, Gary Ezzo -- not one has written a guide for the parent of a child with FASD. Search Amazon and find 191 topics on raising boys, but not one of them reaches the parent of a child with FASD.

Our children with these Spectrum Disorders do not fit the mold. Any mold. They are unique like no other.

One day they love on you as if you hung the moon; the next day they accuse you of child abuse. They joyfully comply with the boundaries you have set in the morning, only to have a raging unexplainable screaming melt-down over the very same rule in the evening. They adore and love their siblings, then an hour later blindside them across the back with a giant stick. Whatever I did yesterday that kept them calm, even keeled and healthy...today is sending them into a frenzy.

I am not on a quest for Nirvana yet I have learned about Qigong, castor oil, flower essence and other Eastern medicinal treatments you may not even know existed.  I have charted our eating habits meticulously. I have eliminated all things processed, genetically modified and unnatural.  I have tracked the phases of the moon closer than my own monthly cycle.  I check the barometric pressure and weather forecast every night before bed.

There is no limit to my self education when it comes to my child's well being and training. I will do whatever I can humanly do as his mother to give my child opportunity to reach his full potential.  Yet, that is my great unknown: what is his full potential?  That not knowing if he will mentally even mature to age 16 is something that can worry me to death. Literally if I allow it.

And so I rest my passion, which is at times all consuming and utterly draining, I take my fears of the unknown,  the frightening FASD statistics that tear at my soul and I lay them at the feet of throne of God, and with all my heart I cry out for wisdom.  With tears flowing I remind God that He promised in Job 23 that even when I am confused and when God does not appear to be near -- yes, He does know the way that my child will take. And my soul finds rest in this hope: the journey is His, not mine.

Slowly I peel my clinched whitened fingers off the soul my child.  I do this often, if not daily. It is not a one time release, for I habitually take back what I have given. So continually I am learning, this place of finding rest is one where I must return to.  My soul will only keep this rest as I trust in the promise: He knows the way that my son will take.

FASD: An Invisible Disability

The intent of my blog is to educate people about Fetal Alcohol Spectrum Disorder and to encourage families who are living with FASD.  The hardest part of FASD is that it is a relatively unknown disability. 

Most people I encounter,  teachers, principals, doctors, neighbors and friends, have never even heard of Fetal Alcohol.  And those who have heard of it think FA is something that a baby might be born with that disappears quickly after birth, or can be cured with medication.

The startling reality is this: There is NO cure. It is lifelong.

I am reposting part of a speech that Jodee Kulp gave one year on FASD Awareness Day. She is an amazing mom who is raising a daughter with FASD, and she has been a strong advocate in the US for educating others about FASD.  Please take a look at her website or read the book, Braided Cord, written by her daughter Liz to learn more.

... Alcohol is devastating, and most devastating to the weakest and most vulnerable in our society -- the unborn child. Alcohol exposure is the leading known cause of mental retardation in the western world - US, Canada, Europe and Australia.

In the United States 10,657 babies are born daily (1999 US numbers are listed below)

• . . . 3 will have Muscular Dystrophy
• . . . 4 will have Cystic Fibrosis
• . . . 4 will have Spina Bifida
• . . . 4 will be infected with HIV
• . . . 10 of these babies will have Downs Syndrome.

Researcher and fund-raisers are working for these children.

But -- are you ready for the figures --

• . . . 20 babies will be born with FAS
• . . . these children will have visible facial and other physical deformities
• . . . they are the lucky ones

People will see with the eyes, understand and help will be provided. These physical manifestations are not caused by MORE drinking but simply because of the day in gestation the pregnant mother chose to drink.

Today is a day of awareness.
NOW -- are you really ready for the tough issue

• . . . 100 babies will be born with Fetal Alcohol Effects
• . . . these children's deformities will be hidden within their bodies, in their brains and organs.
• Most will go undiagnosed.
• Most will live a life with little help with behaviors misjudged and struggling with learning and emotional issues.

Today is a day of knowledge.

Brain damage is non-reversible and a permanent condition that an individual must live with for the rest of their life. The person with prenatal alcohol exposure does not have the choice of NOT being impaired, yet has the responsibility of learning to live and to fit into a society that neither tolerates nor understands their impulsive behaviors.

I hope this has been a sobering post for you to read.

Most of all I hope you will doing something.  Please tell everyone you know:  there is NO safe amount of alcohol consumed during pregnancy.

0 drinks for 9 months.

It's that easy to prevent another child from ever having to live with this lifelong disability.

I would love to hear from you if you have any questions or thoughts about FASD. Please email me or leave a comment.