Monday, January 19, 2015

The 12th Man

The 12th man.

If you live on the west coast, particularly the Pacific Northwest region of the United States, an image immediately popped into your head when you read those words: the 12th man.

A certain friend of mine (whose identity shall remain nameless as they mourn loss in Wisconsin) said this weekend, “I’m sick of hearing the hokey 12th man garbage”.  However, if you’re a Seattle Seahawks fan, you know you ARE the 12th man. As the 12th man, YOU are part of the team. 

Follow all the social media posts and hashtags such #12thman, #weare12 or #12manstrong and you'll see its a real phenomena.  Get this: on Instagram alone there were 474,320 posts with the hashtag #12thman.



An article in USA Today quoted the coach as saying, “When you have 12’s behind us like this today, and you have the belief these guys have in one another, there ain’t nothing you can’t do,” Carroll said. “And as crazy as that sounds, they pulled it together. They pulled off a great comeback victory.”

In case you're still unclear about all the 12th man hype, Wikipedia says this, “The 12th man or 12th player is a term for fans of teams playing American football or association football. As most football leagues allow a maximum of eleven players per team on the playing field at a time, referring to a team's fans as the 12th man implies that they have a potentially helpful role in the game. Infrequently, the term has referred to individuals having a notable connection to their football team...”

A few nights ago I lay awake thinking about the 12th man. Raising a child with disabilities requires an incredible amount of endless energy. There isn’t much down time and it often feels like life is throwing endless yellow flags at you. You learn to make the most of every yard you gain.

When emotions run high in your child, joy overflows: there is constant singing, babbling in their own happy language, whistling contended tunes, telling you over & over & over & over how much they love you. Yet emotions can take a quick turnover where it often gets physical: arms start flying, holes appear in walls, clothing gets torn, toys destruct, tears are shed, Legos are broken, dreams are tackled and the wind is knocked clear out of you.

It's when you feel defeated, discouraged and unable to make another move, at that very moment ... the 12th man becomes invaluable.

As a parent, I need my 12th man!  I need to know there is someone out there cheering me on, someone telling me to get up and try again, someone encouraging me to press on for another day.  My child can have tremendous swings in mood and in physical health which means I’m on a direct text line with the school; the 12th man is the one who doesn’t give up on me in spite of my seemingly unpredictableness.

I need a 12th man cheering on my behalf, after having my child screaming for hours. I need a 12th man who dresses up and says “let’s go!”, after spending the day telling my child “please just let it go”. I need a 12th man team who stays for the long haul when my child has just entered the hospital for the 3rd time this month. I need to be 12 man strong when there is yet another IEP battle to wage against a principal who just doesn’t get it, still.

If you’re raising a child with disabilities, who is your 12th man

Here’s a few ideas to get your own cheering squad started:
  • Reach out to other parents in your child's Lifeskill/ERC class; they need to be 12 man strong just like you!
  • Ask your pediatrician if there's a local support group. I’m in a closed Facebook group for other moms in my city who are raising kids with autism.
  • Call local churches or Joni & Friends to find a support group.
  • Can’t find a local group: ask another mom of an exceptional child to meet you at the park...you’ll be surprised how fast word will spread & others will join you.
  • Join a closed or secret Facebook group where you can safely vent to other caregivers who understand your childs unique needs.
  • Follow blogs of others who are on this journey with you.  Jolene Philo, who writes Different Dream for my child, has a great link up every Tuesday where you can follow the blogs some exceptional families.
  • Special Needs Parenting.net reminds you that you are Not Alone, providing resources from amazing writers who are caregivers too.
  • Forward this post so others can learn to be your 12th man.

On the other end of the playing field...are YOU a 12th man?

Here’s how you can be a 12th man for a family raising an exceptional child:
  1. Call and just say, hi.
  2. Meet them at the park for fresh air & coffee.
  3. Offer to watch their child for 1 hour so they can do laundry or nap.
  4. Offer to do their laundry.
  5. Write a simple note of encouragement.
  6. Tell them you are praying for them.
  7. Ask how can you pray specifically.
  8. Ask how they are doing...then stop to listen without offering advice.
  9. Call and just say hi.
  10. Invite some or all of their children for a play-date.
  11. Take a meal...don’t wait for a crisis. Take a meal tomorrow.
  12. Don’t give up on them, remember their life is exceptionally stressful.

Perhaps God had a #12strongteam in mind when writing Hebrews 12:12-13  So take a new grip with your tired hands and strengthen your weak knees. Mark out a straight path for your feet so that those who are weak and lame will not fall but become strong. (NLT)

I challenge you today: thank your #12strongteam, find a #12thman, BECOME a #weare12 for a family.

Tuesday, December 30, 2014

PTSD: What do they truly remember?

My precious Boy Wonder was adopted when he was still a toddler. He was developmentally delayed and did not speak, neither English nor his native tongue. Over the past 8 years as we've dealt with many "irrational" fears, "annoying" behavior and downright frustrating moments, my husband and I have talked and wondered about what really happened to him in his orphanage. How much does he remember? What did they allow to happen to him physically and emotionally? Obviously, something happened.  Does he have PTSD? If so, it's never been diagnosed.



Our agency told us he was young and wouldn't remember his early years. Books told us to love him enough and he'd grow out of it being raised in our forever home. I've lost count of how many professionals we've seen, how many psychiatrists and psychologists have probed and prodded every nook and cranny of our life. We don't have answers. We may never have answers. But we don't want to give up hope.

A wise friend of mine wrote an incredible blog about PTSD and children.  I'm not going to attempt to elaborate or summarize it. I'm going to link you to her post: it is a MUST read. You can find wonderful resources on her blog Different Dream for my child

I discovered Key Ministry - which is an awesome resource for parents raising kids with special abilities - at the Accessibility Summit.  Key Ministry knows the value of Jolene's experience and she wrote this guest article on PTSD for their blog entitled: He Won't Remember: Children and PTSD. 

As 2014 draws to a close, I pray you will be encouraged to know that there are "Jolenes" and "Key Ministrys" out there to help you on your journey. You are not alone.

Take hope!


Friday, December 19, 2014

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.

Saturday, August 30, 2014

Red Shoes Rock



There's a small movement occurring across the world right now.... and I’m not referring to the Ice Bucket Challenge.  This grass roots movement is called Red Shoes Rock. The idea is to wear red shoes from now until September 9th (Fetal Alcohol Spectrum Disorders Awareness Day) and every time someone comments on the red shoes, the wearer educates another person about FASD.  (As if I need another reason to buy me some new Red Shoes!)




Today my shoes took me to a place of grace, flowing with hope and source of peace.

God surely knows that on this FASD journey I need grace. Boy Wonder also requires grace on a daily basis. Living on the Spectrum can cause him to be THE. MOST. ANNOYING. CHILD. EVER!!  In our house we have run the gamut of annoying OCD habits.  Lest you think I exaggerate, here are just a few:
Whistling that would put even the Seven Dwarfs to shame.
Humming incessantly as long as he’s awake.
Biting nails like they were his Last Supper.
Picking skin until it is scarred and bleeding (we should've bought Band-Aid stock!).
Sucking fingers as if they were slathered in sugar.
Right now however, its clapping. Non-stop clapping. Eating and clapping. Walking and clapping. Reading and clapping. Playing and clapping. Clapping. Clapping! CLAPPING!! So yes, in case you wonder, grace is needed in my home.

Here’s the catch: The more irritated I am at his annoying traits, the more grace he needs...yet the longer the annoying habits manifest themselves in my presence, the less likely I am to give the grace.

Still the real irony is found in the fact that the less I am to give him grace, the more likely I am to lie in bed at the end of the day and ask God to give me grace.

And once again, I find that my child with disabilities truly has the ability to teach me oh so many lessons which I need to learn. God has pointed out many of my short comings through his young atypical life.

So when Sunday morning rolls around and I slip beautiful Red Shoes on my feet, they are walking me into a place I need to be. My soul is parched and desiring Living Water. I need the sweet grace of the Holy Spirit to fill me with cool, refreshing water of life that I may overflow into my family.

Where will your Red Shoes take you?

Thursday, March 20, 2014

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



Monday, February 24, 2014

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.

Friday, October 11, 2013

Ordinary.

Ordinary.

Such a simple word.

I really had no grasp of the depth of the meaning until my son arrived in my life: disabilities and all.

Ordinary is a gift.
Ordinary should never be overlooked or taken for granted.

This morning, as we had a few extra rare moments of empty time before heading out to school, my son was tossing his lighted-eye-ball-glow-in-the-dark-glitter-bouncy ball in the air.  I stopped my hurry and puttering of being a mom and said “toss it to me”.

A huge smile came over his face and he tossed me the ball. He squealed with delight as I caught it and tossed it back to him. Joy flooded his face as we continued to toss the ball for 5 minutes. He laughed loudly, freely. He was thrilled I stopped to play toss with him.

Ordinary. There is no such thing when you have a child with disabilities.
One never knows what will happen from one moment to the next.
An ordinary ball. An extra ordinary child. A few moments. It all adds up to a gift.

I’m thankful God gave me this boy to teach me that there is nothing “ordinary” about life.