Friday, July 31, 2015

Finding the New

Looking up (3588243695).jpg
"Looking up" by John TannLicensed under CC BY 2.0 via Wikimedia Commons.
For I'm about to do something new.  
See, I have already begun! Do you not see it? Is. 43:19a (NLT) 

Routines Everywhere
No, I have to admit I can’t.  It’s the same thing every day.  If you have a child with autism, you understand routines.  The wakeup routine: come to the door and collect all items of clothing, then shoes, get dressed, then use the bathroom.  The breakfast routine:  ask for water, drink it, ask for the glass to be taken back to the kitchen, wait at the kitchen door for the smoothie to be made, drink it, ask for water.

The boring things don’t change.  The hard things don’t change.  Impulse control blips.  Potty training struggles.  OCD issues...  The list goes on.  I hate it when people ask, “How’s Jaedon doing?”  What am I to say?  No milestones, no markers, no new words.

Coping Routines

Part of coping with autism has been to develop routines of my own.  I know him, so I have thought, emotional and behavior patterns that create my autistic routine.  I prevent catastrophes with these routines, I keep myself and my family coping.  Routines are funny things, though.  They limit your view of life.  This is part of why we work so hard to help our kids be flexible.  So they can experience more, and learn more as a result.

Part of my autistic routine with Jaedon has been that I don’t take him out with me into the public by myself.  When puberty hit, I noticed that he became stronger and faster than I was.  That realization, plus mood swings, plus a couple incidents of running down the sidewalk in the Bronx, and running into the street in Connecticut,  prompted my new routine.  It’s a good routine.  It’s kept my blood pressure from skyrocketing while assuring my other 2 little ones that we’re doing our best to reduce scary occurrences!   These are the perks of this routine: predictability and safety.  I try not to look at the flipside: a huge limitation of our experiences together as a family.

It’s interesting that God asked Isaiah if he could see the new thing that He was doing.  That suggests a difficulty seeing.  Though it may be obvious to God, probably not so much to Isaiah.  God had to get specific.  It’s springing up here.  Look over there… Could recognition be part of our problem?  Are there special glasses to help us recognize the new things God is going?  I need a pair!

Mommy, you were considering taking Jaedon to the park yesterday right? Could we go to the park today?  Sometimes recognizing the new thing that God is doing starts with a shove in the direction of changing my routine.  That was the voice of my 13 year old daughter, who had been having a little bit of a down day.  In her question, I heard her thought, “Maybe being in the park would help me feel better”  My desire to help her in any way I could, interrupted my automatic answer to questions like those.

I had noticed that Jaedon seemed calmer.  He is staying in his seat more while we drive, even without his harness.  He’s more responsive to my direction around the house.  I have been asking God for more opportunities to be together, for Jaedon’s continued healing, for healing for our family.  God’s word says these issues concern Him too.  Could I believe this for myself today?

I won’t give you all the details, but we went to the park and had a great time.  As Jaedon monopolized the swing, I took the opportunity to inventory all the new things.  This was the first time in 3 years that I was the only responsible adult in an external recreational space with all 3 kids.  Jaedon got to take many looong walks.  He responded to all my redirections and gave some of his own. He held my hand when requested, and stayed by my side when he wasn’t holding my hand. He took my hand often, to help me move the way he wanted.  He was regulated in a chaotic space, moving away from moving kids and avoiding projectiles (the park was full!).  In a new space, outside our routine, so many new things to be seen, invisible in the old routines.

The B.A.A. of Seeing the New

I want to increase my ability to see what God is doing.  It must start with faith, the evidence of things that are still invisible.  Lord, help my faith.  My faith is in what God has said.  And He has said a lot! Like, Isaiah 55:11, God’s Word always produces fruit, accomplishing His purpose; Lamentations 3:23, His mercies are new every morning! If I actually believe God’s word, I will anticipate the new things that could spring up in any moment.  What I anticipate and believe will show in my actions. 

Experience the new = Believe + Anticipate + Act based on beliefs.

Lord, Thank you for the new things you have in store for me today.  Increase my heart's longing for you, so that I will look where you look. Please heal my eyes so I can see as you see. Transform my heart so that I can believe what you have said, and anticipate your presence in all the ordinary, boring, routine happenings today. Help me to see your miracles unfolding in my family's life today and energize me to let go of the old, and act based on what I believe and anticipate that you will do.

Thursday, July 30, 2015

Wanting to Be Well

Swimming in Lake Tahoe
Here a great number of disabled people used to lie—the blind, the lame, the paralyzed. One who was there had been an invalid for thirty-eight years. When Jesus saw him lying there and learned that he had been in this condition for a long time, he asked him, “Do you want to get well?”
“Sir,” the invalid replied, “I have no one to help me into the pool when the water is stirred. While I am trying to get in, someone else goes down ahead of me.”
Then Jesus said to him, “Get up! Pick up your mat and walk.”  At once the man was cured; he picked up his mat and walked.
John 5:3-8 NIV
Do you want to get well?

It sounds like such a harsh question with an obvious answer; but really, it isn't.  We know a lot of people who actually seem more comfortable wallowing in what they DON'T have rather than looking forward and working toward happiness. 

Do you want to get well?

We moved to Nevada over a year ago and immediately I fell in love with Lake Tahoe. 

But, during the course of this summer, I have decided that Lake Tahoe is not just my FAVORITE PLACE, it is my HAPPY PLACE.  Lake Tahoe is the place where I GET WELL. 

As the parent of a child with special needs, I think the criteria for a Happy Place may be different than that of a parent who is able to do more independent, adult activities.  Here's a definition of MY HAPPY PLACE:

  • My child is happy
  • My child is safe
  • My child is entertained with minimal energy being exerted by ME
  • I feel relaxed
  • I feel safe
  • I don't even care what else is going on around me and my family; I am totally in the moment and enjoying the beauty of this world
Yes, Lake Tahoe is my happy place.  And when I feel the weight of the world weighing me down, I know that it is time to go there so I can reset.  When I need to GET WELL, I go to Lake Tahoe.

Lake Tahoe has some areas where it is very, very shallow even out quite far into the lake; so my daughter, who cannot swim even after years of lessons, is comfortable there.  She is sensory-seeking, so she loves the sensation of water.   (When I think about it, our happy place when we lived in Wisconsin was Noah's Ark Water-park, so it makes sense that our happy place now would include water.) There are waves in the Lake Tahoe water from all of the boats, but they are nothing like the powerful tide of the ocean, so I love Evie's delight in "catching the waves" while still being safe and in control.

We were at Lake Tahoe today and we just hung out in the water, bouncing a beach ball back and forth as the waves carried us in to shore.  When we got in too close, we'd just walk back out and start all over again.  Evie started singing some TobyMac songs and I sang along.  A man walked by, just as I was thinking what a perfect moment we were enjoying together, and he said, "Someone is very happy...." as he looked at Evie. 

Yes, someone was very happy...and that was reciprocated in her the person who feels her sadness, who shares her anxiety, who hears her heart.  Evie was happy, so mama was happy too.

God wants us well, but he wants US to WANT to BE we need to go to our happy place; our place of healing when we need to get well.

He's not going to MAKE us go there if we aren't ready to be well.

Where is your happy place?  Where do you get better?  Where do you feel peace?  

Go there...whenever you need it; whenever you can.  Don't let other people hold you back with thoughts of "it's too far," " it's not practical," or "that's not a logical choice for today."  God has created that place for you so you can take refuge in him; so you can get well.  He will open the doors for you to get to your happy place...

He moved us from Wisconsin to Nevada to open another happy place door...

He brought Jesus to the man by the pool who was waiting to be healed...

And he has a happy place for you too.

Pray:  Heavenly Father, I always have so many thoughts and feelings and worries running through my head.  Thank you for creating a happy place just for me so I can reconnect with you and be re-energized by you.  Help me to carve out time to be healed; help me to remember that "getting well" is not a BAD THING; that you DESIRE for us to GET WELL.  Amen

Wednesday, July 29, 2015

Dear Lord, Please Help Me Find My Cheese

"Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9, NIV

It's not exactly cheese, but it has been moved. In the interest of full disclosure, I haven't actually read all of the book Who Moved My Cheese, by Spencer Johnson but it has been hanging around my book case for years...

Actually, I suppose you could stick whatever name you choose on it; cheese, routine, comfort, familiarity, tradition. You could even the insert the word "normal;" it would work here also.

While the name does have importance, it is not really the weight of this discussion. I want to focus on the reaction...

On our response, to change, to the disruption of routine... We live in a world that often seems to be swirling with change. Change -- that one powerful word has so much potential. It's one simple word that can illicit hope, fear, anxiety, and joy. It can make you laugh, and it can make you cry.

Having an almost 16 year old son with who is severely impacted by autism, we have been given a whole new perspective on the importance of routine, and the effects of change. While he has worked very hard and made great progress in many areas over the years, he is still very much impacted by his diagnosis. More importantly though, we continue to be very much impacted by his existence.Through him, God has taught our family so much.

So, now knowing that Cooper is autistic,  it should not surprise you when I say that he does not like change. Cooper doesn't just like routine and familiarity, he needs it. Cooper's response to change is quite often dramatic, especially if the change is sudden and he has not been prepared.

Cooper has a routine. He comes home from school, takes of his backpack and shoes, puts his stuff away, and asks for chicken. He then goes to his room to unwind on the computer and wait for his chicken. This day, the routine failed, it changed. He was not warned, he was not prepared. It happens.  That's life.

When the school bus stopped in front of our house a few days ago (thirty minutes late) to drop Cooper off from Summer School, I opened the front door and froze. There was Cooper, galloping full-steam-ahead, straight for the front door. Arms raised high above his head and hands flailing dramatically in the air, his face was contorted, and I do not possess the vocabulary to describe the sounds he was making. He made it through the door, threw off his backpack yelled for chicken, and ran to his room. It was there he discovered the mouse to his computer wasn't working.  He screamed with every fiber of his being for chicken. I will spare you the rest of the details, but suffice to say his reaction worsened before it improved.

I don't always think his reaction is so unusual. We all have times, sometimes frequently, when we react dramatically to change. We have seen that with recent current events in our society.

Food is Cooper's comfort. He eats for a variety of reasons, not just for hunger. That's not so unusual either. When he is stressed, it is calming and comforting and safe and predictable. He will demand, and on occasion even fight for, that comfort and stability.

When change comes, and it always does, we react. If the change brings anxiety and fear, we reach, and search for the familiar. We yell for stability and fight for safety in what we know.

My family has been through many changes the last few years. We have five children ranging in age from 9 to 22. They are experts at starting new schools. We moved from our lifelong home in Tennessee to Ohio. Our oldest daughter stayed behind, and this past year was married. We were only in Ohio for a year before we were moved again. We have now lived in the state of Arkansas for two years.

I have to say that before our family experienced these changes I don't know that I was so familiar with the verse at the beginning of this post, at least not in the same way I am now. I like to think that we have, as a family and individually, held tight to this verse and the promises of Jesus as change came and our world shifted.

It's not always easy to do, remembering that God is with us even in change and disruption.

As I reflected on Cooper's intense reaction to change, on his screaming with everything in him for chicken, for comfort, I realized something. I realized that's what we do, what we should do, what we try to do. So many times we have come through the door of change and with everything in us screamed for comfort, for stability...for Jesus. What we reached for, what we have held on to, was the comfort of his promise found in the words of that verse...we are not alone. My prayer is that we all know that the ultimate comfort and true stability in a world full of change is found in Jesus.

May we all come through the door screaming, with the urgency of my son needing chicken, for Jesus and for his promises and words of comfort.

Prayer: Heavenly Father, we are grateful for your promises, your patience and your provision. When we find ourselves in a world that is almost constantly changing around us and we cry out for comfort, for stability, may you quiet our hearts and minds so that we can focus on you and the words of your promises. Promises you have laid as a firm foundation will never change.

~Beth Clay 

Tuesday, July 28, 2015

Peace, Be Still

"Be still, and know that I am God! (Psalm 46:10 NRS)

“Where did the summer go? Two months ago I had all of these great intentions. Now it’s almost time for back to school!”

My friend’s frustration certainly mirrored my own at times.  How often have I lamented, “If I just had the time I would…” But then the much-needed gift of time was wasted.

Or was it?

Engaging life at a different and slower pace is a gift.  Give yourself permission not to have to produce every moment. There is a saying, “We are human beings, not human doings.”

Simply ‘being’ rather than ‘doing’ is a gift in itself.

A scripture meditation to help you relax and enjoy that difference.
Sit comfortably in a place free from distractions for just three minutes.
Breathe deeply and focus on one line for each minute
“Be still and know that I am God.”
“Be still.”

May the peace that surpasses all understanding be with you now and forever more. Amen

Image “Poppy” by Dan courtesy of

Monday, July 27, 2015

What Are You Doing Here?

   " I waited patiently for the Lord to help me,  and he turned to me and heard my cry. He lifted me out of the pit of despair out of the mud and the mire. He set my feet on solid ground and steadied me as I walked along. He has given me a new song to sing, a hymn of praise to our God." (Psalm 40:1-3)

“What are you doing here?

It’s a question I find myself asking a lot these days. But I’m usually asking it of myself.

Even though I have been a special-needs dad for almost 18 years now, I still have moments when I feel absolutely overwhelmed.

Defeated. Crushed. Helpless.

Last week was one of those moments. Despite an increase in seizure meds, our son is having seizures even more frequently.  Some of the side effects were also creating issues.

There is something inherent in a dad that instills in him the passion and drive to be his child’s protector. We read and talk a lot about “don’t get Mama Bear riled up.”  But a male grizzly bear (i.e. special needs dad) is pretty formidable as well.

Especially one who takes his role as his family’s warrior and protector to heart.

Yet, watching your son have yet another seizure, despite medications and all your efforts, can be disheartening and deflating.

I want to grab him and wrap my arms around his flailing body and command the seizures to leave him alone for good. I want to promise him that I will not allow a seizure to ever affect him again or touch his body.

But I can’t. So I feel powerless and ineffective as a dad in my ability to protect my son.

I remember when we first learned of our son’s profound special needs. I remember that feeling of our world turned upside-down. I remember the barrage of emotions and the onslaught of feelings that left me overwhelmed.

Mostly I remember thinking how difficult and challenging the journey would be.

Two moths ago I was diagnosed with kidney failure for which there are treatments, but no cure.

Friday, I spent the entire day at the transplant center of a hospital as I began the process of testing and evaluation for a kidney transplant.

Tests, blood work, doctors, nurses, social workers, education on finding a living donor, more tests and a whirlwind of appointments.

Last night, I felt those same feelings I first experienced upon learning of our son’s special needs. I lay in bed overwhelmed again.

Scared and afraid.

The same cave I discovered upon our son’s diagnosis summoned me again. The cave of despair and depression beckoned, whispered, and taunted me.

I wanted to climb into the cave and lay on the cold, damp floor.

As a pastor and disability ministry leader, my faith is supposed to be planted in bed rock and unflappable.  But in the real world, my faith can be shaky and sways in the wind like everyone else.

“I do believe, but help me overcome my unbelief!” (Mark 9:24)

There is a moving story in scripture about the prophet Elijah. After a powerful miraculous showing of God’s power, when Elijah’s faith has called down fire from heaven to reveal God’s glory, Elijah finds his faith weak and seemingly ineffective.

I get it Elijah. Me too sometimes.

So Elijah retreats to a cave and hides out in a cave.

I get that too Elijah. I’ve done a lot of spiritual spelunking myself.

In the midst of his depression and despair, God himself shows up at the entrance to the cave and says to Elijah, “What are you doing here?”

God always shows up in our caves looking for us. He has been doing search and rescue since the beginning of time.

He found Elijah.
He will find me.
He will find you.

He will whisper to our spirit, “What are you doing here?”

Then he will light the path, take us by the hand, and show us the way out of the cave.

Because God’s grace is greater than our doubts.
God’s grace is greater than our fears.
And God’s hand stretches into the deepest recesses of our caves.

PRAY: "Father, even when I doubt, even when I'm afraid, even when I feel overwhelmed, thank you for always offering me a light and a path for my feet."