Autistic in the spirit

An undeniable emptiness, I've felt before, came over me this morning. It's just Reid and me at home this weekend. Have you ever felt alone in someone's company? Hearing him hook up to the television--like an IV--I followed him downstairs feeling taken-for-granted, ignored, like furniture.

All he really cares about is that constant stream of visual stimulation. His assumption that I will always be here to provide basic wants and needs, is accurate even if hurtful.

I say "Good Morning" to no response. Until, "can you bring me hash browns?"

How many times do I wake up and the first thing I say to the Lord is, "Will you bless my day?" or some other thinly veiled demand for creature comfort. To some degree, we all go around idolizing our own pleasure, achievement, pastimes, or just our own navels. While God sits waiting for a heartfelt "good morning" connection.

God in Heaven continues to bless us but, you know all He really wants? Relationship! To have us come look in His eyes, play footsie, or otherwise give Him the time of day. That's all I want from Reid. Spent umpteen hours--his lifetime--and thousands of dollars trying to achieve it. To have him greet me

spontaneously, care what I think, want to sit with me or tell me about his day.

Maybe, just maybe, God's purpose in allowing autism is to illustrate the condition of our hearts toward Him in the spiritual realm. Can you think of a better way? Many of us are autistic in our spirits. No intervention the world offers can save us from ourselves. The reality of Reid helps me grasp the parallel and modify my own behavior toward God my Father in heaven.

If God loves me while I am yet a selfish sinner turning my back and gaze away from Him, then I can keep on loving Reid on the days he doesn't express any reciprocity. I see myself in him.

Brings to mind these lyrics,

• How Is It Between Us? by Sara Groves

More Sara Groves music on iLike

Stronghold

Do you have theme words in your life? Like a recurrent dream, the word "stronghold" shows up often for me.

First time, I really didn't know what it meant. However, when someone uses that kinda word in prayer over your infant children, you look it up.

Definition of STRONGHOLD

1

: a fortified place

2

a : a place of security or survival b : a place dominated by a particular group or marked by a particular characteristic

Initially, it seemed like some construct the enemy built to bog you down. A stronghold that enemy troops might have over an area.

Over the years through various Bible studies, I have learned that the Lord has strongholds of His own. Way more than the enemy.

Lately, I am learning that the Lord is a stronghold to whom we'd be wise to run to at lightning pace when we want protection. It is a safe refuge where we can be still and watch Him fight for us.

Currently, I am reading The Stronghold of God by Francis Frangipane and we completed this puzzle over Christmas. Oh how I love a good Unit Study with kinesthetic teaching!

Just today as I was walking with my Chris Rice, Peace Like a River cd, this stanza of grabbed me by the ears perhaps since I have tried so long in vain to save my son in my own strength:

Did we in our own strength confide,   

our striving would be losing,   

were not the right man on our side,   

the man of God's own choosing.  

Dost ask who that may be?    

Christ Jesus, it is he;   

Lord Sabaoth, his name,   

from age to age the same,   

and he must win the battle.

Sure enough, as I checked the title...it's "A Mighty Fortress is Our God!" Synonym for stronghold.... "fortress." I love that God loves words.

Although we pridefully refer to autism as a new diagnosis and ourselves as pioneering crusaders in the fight against it, autism is not puzzling to God. Jesus is our Savior and Deliverer from every foe and has been since Martin Luther wrote this in the 1528. He describes the same outcome we seek today when we feel socked in by defeat, fatigue, insurmountable opposition, and unlikely odds. I am enjoying the truth this song proclaims and the instructions of all four stanzas of the lyrics. They deserve a modern rewrite by Eugene Petersen.

The Lord has been Mighty in battle since long before Luther, in the days of Moses, Aaron, and Joshua. Our God is the same, the Holy Spirit the same, our victory comes in Jesus. Only the name of the enemy seems to have changed. Why reinvent the wheel?

I'll include this video too since Chris Rice's is not on YouTube. Here is Christy Nockels of Watermark singing, "You are My Stronghold."

I told you it was a theme. Do you have one?

The LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation, my stronghold. Psalm 18:1-3

God is a safe place to hide, ready to help when we need him. We stand fearless at the cliff-edge of doom, courageous in seastorm and earthquake...Jacob-wrestling God fights for us, God-of-Angel-Armies protects us. Psalm 46:1-3 The Message

The weapons we fight with are not the weapons of the world. On the contrary, they have divine power to demolish strongholds. 2 Corinthians 10:3-5

Provision

When I say provision do you think of food? Ordinarily I would too, though "I'm not a big eater." Ha!

However, let me go on record as saying there are more important provisions than food. When I look back at our journey through autism thus far, there are some pivotal people who the Lord has provided for us at just the right time in truly miraculous ways.

Danielle, was the first case manager for Reid's home program. She became way more than that, like a counselor and trusted advisor. What amazes me still is how we had met in Bay Area through an early mentor mom to me, Irma Velasquez (she has since started Wings Learning Center). Reid had had a facilitated playdate with her son, Aaron, which Danielle facilitated. We connected on some gut level and remembered each other. In less than a year's time, we both were planning a move back to San Diego. Danielle confided that she might also be relocating to work at the UCSD Autism lab.

Timely enough, we had a shoe-in for our home program --someone I already trusted fully. Unbeknownst to me at the time, Danielle had gone to our church as a college student. Our shared faith further bonded us and blurred the lines of professionalism. Suffice it to say, I was very comfortable with her in the house training our team and spending long hours with Reid. We cried when she left at the acknowledgment of God providing exactly what we needed in those early days.

Carla, was part of the glory days on Danielle's team. We hired her with the same gut feeling that she'd just plain be good. A Canadian expat, she worked part-time as a guidance assistant in our local district. Little did we know what mysterious ways the Lord was working in then. I will never forget the first time Carla and Reid came into the kitchen after their closed-door play session. They were singing little Sunday school praise songs, which were Reid's only words at the time. I was flabbergasted to see that Carla knew them! God had provided.

We cried when she drove off for Florida in that orange Penske truck, not knowing that she'd be back. The amazing recurrent blessing of Carla is that she moved back for another year under very different circumstances for a Masters in Real Estate. The gift of that year was for me as much as Reid. It marked a million milestones in both our lives and moved me forward in writing, mothering, and sisterhood, for that is what we've become.

Kathryn Mary, cousin Kat, has been a similar kind of gift these past 5 months. She has been friend, confidante, family member, sous chef, and breath of fresh air to all of us. For such a time as this, she has helped us shift our focus to Allie's imminent college decision; she offered a naturally occurring novelty of socialization for Reid; and without realizing it helped us raise the bar on many habits--whether wearing pajamas, shutting the bathroom door, or flossing more often. She left a week ago and we cried then too.

As I near the completion of Kelly Langston's Authentic Christianity Challenge, I think being authentic is acknowledging that the best things in life come from Him. In so doing, I also project that what He's done before, He will do again. The Lord will provide.

Who or what has God given you that you couldn't have arranged yourself?

Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. James 1:16-18

So then, don't be afraid. I will provide for you and your children." And he reassured them and spoke kindly to them. Genesis 50:20-22

And who knows but that you have come to royal position for such a time as this?" Esther 4:13-15

Oh the Places You'll GO!

This family has gone over the hills and far away, to love their son and come to a place of accepting who he is even if it means embracing autism. Many phrases come to mind, "Whatever it takes," "what we'll do for love," and the one I hear recurrently from well-meaning friends, "I don't know how you do it." There were days, many moons ago, that honestly, I didn't quite know how I was doing it either. But what the Bible says is true, God's grace is sufficient, and we do.

So go with me here, if the strength to do what God calls each of us to do--be it autism or any other life circumstance--is not our own but His, then it doesn't matter who we are, but whose we are. If we are drawing from the same source, then any one of us could do it if we had to. Which is now my standard reply to that comment, "You'd be surprised what you can if God calls you to it." God's immeasurable grace and riches are of infinite supply. Many of us parenting autism, find new reserves of energy, creativity, stamina, and patience because God has allowed autism in our lives. What's so bad about that?

I do not wish to perpetuate the myth that these far flung adventures have any credence or magic power in and of themselves. Whether swimming with dolphins, racing with horses, or listening ad infinitum with headphones, I think the true value is in the journey not the destination. The journey for the parents is one of learning to relate differently and to accept (not change) their child. The parallel journey for the child is to discover who they are and where they fit in the world and how to trust. Having to go to greater lengths to do this with children on the spectrum, many parents demonstrate over and over again that love is the greatest motivator.

Is there a more powerful example than the cross? For God so loved the world that He gave His only begotten Son, that whoever believes in Him would have eternal life. The Easter message is one of sacrificial love. Jesus, who is love, was motivated to go where no man has gone--literally to hell and back--to save you and me from a fate worse than autism.

When we do anything resembling that, whether by affording some outrageous therapy, homeshooling 'til we don't recognize ourself in the mirror, or driving illogical distances to a qualified therapist, we are following Christ, sharing in his suffering, and becoming more like Him. Go ahead and spill yourself out for someone you love; you're in good company even if the world doesn't understand.

The book, The Horse Boy was released April 14th. The British family is described here in an article in the Telegraph and the trailer of the subsequent movie as well as the movie website here. Their journey makes a fascinating story. Admirably, the family has taken the proceeds of the book and started The Horse Boy Foundation and ranch outside of Austin. If you go there, know that you take your own therapists, your own child, and do your own thing with their horses and premises. They don't have a magic bullet or even much staff; you must come to your own terms with God's own will for your own life and family. No one can do that for you.

Don't all run off to Siberia or Austin, but do lend an ear to your child's unique pulse today and tune in to how God is calling you to love.


Dear friends, let us love one another, for love comes from God. Everyone who loves has been born of God and knows God. 1 John 4:6-8


There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love. 1 John 4:17-19


As a prisoner for the Lord, then, I urge you to live a life worthy of the calling you have received. Ephesians 4:1-3


The one who calls you is faithful and he will do it. 1 Thessalonians 5:23-25

My Father in Heaven

I read this post from Bev at Aspergers Square 8 about the power her father's words had over her even at age 47. Asperger's or not, we all crave words of affirmation like that from a father. Fortunately, our Father in Heaven has left us The Word.

At 43, I still experience pangs of needing to hear something akin to what Bev's father said to her. I have lived most of my life not knowing my own father (for some very good reasons). That reality has at different times caused me to feel independent, smug, numb, and deprived. While the absence of a father leaves a void, it also presents a portal to knowing the one and only, truly perfect Father who is God in heaven.

As a young girl and college student I enjoyed creating an imaginary dad for myself by cherry picking traits from my friends' dads and other men I knew, to make a composite of the dad I dreamed of as my own. This fantasy man was perfect maybe, but definitely non-existent. Now as a 43 year old adult, I see that even those most glowing and desirable traits are merely a reflection of the very nature of God the Father. As a believer, why not go right to the source and relish in my position as His prized daughter?

The Wall Street Journal ran a story yesterday in tribute to a father who epitomized the tough love of a generation ago. It made me cry, but not with yearning. My personal fantasy dad was no Mr. Helliker (notice he did not have daughters)! His strength of character and courage are of a bygone era. What it underscored for me though, is how dimly we see in the mirror the mystery of all God encompasses. He is strong, yes and tough and just and fair but, all at once He is also gentle, good, kind, tender, affectionate and expressive.

One of the most moving weeks in my Bible study this winter was Week 7 in Living Beyond Yourself. Beth Moore, as only Beth can, drills down deep to illustrate each fruit of the Spirit. God not only comes alongside us in kindness to help us parent our difficult children but He is also our parent. He comes to us--no matter how old--and "allows His throne to become a rocking chair." Just as babies need to be held, rocked, and soothed by parents in order to grow and fully develop, we need to let God love us as His children. We "can't know God only as the Sovereign Judge. We must also know Him as the nurturing parent--or our growth will be stunted."

The Father's Love Letter was popular a couple years back. I copied its verses into a spiral journal to read to my kids at bedtime. It is still a beautiful compilation of The Word from the Father to his children. Take some time today to watch, read or listen to it. You are loved.


The LORD your God is with you, He is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." Zephaniah 3:17



How great is the love the Father has lavished on us, that we should be called children of God! And that is what we are! 1 John 1:3



For you did not receive a spirit that makes you a slave again to fear, but you received the Spirit of sonship. And by him we cry, "Abba, Father." Romans 8:14-16

Reid's Baptism Song

I won't ever capture all the facets of the sacred 2 hour period of time last Saturday. They will certainly reflect in my thoughts for years to come as they spill out of my memory. Starting now...


To sing is to pray twice. Augustine Hippo

I love this quotation as it relates to children on the autism spectrum, many of whom sing before they talk. Others sing and never talk. No matter, they can still pray. Prayer is two-way communication with God. It encompasses both talking (with the mouth and/or the heart) and listening (with the heart and/or the ears).

Typically, as part of baptism a new member writes a statement of faith or testimony and reads it to the gathered community. This would have been a challenge for Reid. Singing comes more easily. So with the help of his music teacher, Angela, he wrote a song. Ironically, when Angela was confirmed back in Iowa as a teen, she had done the same thing. That was the first song she had ever written in her life, but not the last. I find that a wonderful sign of God anointing her future path as a music therapist, worship leader, and singer songwriter. She has many songs to her credit now but the first was her statement of faith. Reid's song started as a simple 5 Wh ?'s outline (who, what, where, when why?) and became this:

This Is What I Believe

Verse One
I am a sinner, my name is Reid
A Saviour is what I need
I make mistakes and do things that are bad
I hurt others and make them sad

So Jesus died on a cross for me
But he did not stay on that tree
He rose again from the grave
All the world he came to save

Chorus
This is what I believe

Jesus died for me

I will live eternally

This is what I believe

Verse Two
I am faithfully and wonderfully made
To God I will always pray
Neither death or the angels above
Could separate me from His love

With the Father, Spirit, and Son
Baptized into God's family as one
Down in the water I go
Raised again for the world to know

Interlude
I am alive in Christ
I am alive in Christ
I am alive in Christ
I am alive in Christ

During the baptism, our pastor, Josh Kerkhoff, called on those of us standing in a circle to pray aloud for Reid. One of our friends, Kathleen, who is many things including poetic, prayed something to this effect: Lord, you are the Word and today you are present here in word and in song. I ask that you will communicate with Reid as he is dunked under the waves in a miraculous way with the music of all the angels in heaven. A beautiful sentiment and a prayer which God heard.

Later that night as we sat on our patio eating leftover salads from the beach, I asked Reid, "so what was it like when Josh dunked you underwater?" He simply said, "it was like a symphony." Nothing more, nothing less. He was a boy of few words and now is a young man who still doesn't mince them. He often doesn't answer a question, especially an open-ended one like that. This time he answered and so had God!


God made you alive with Christ. He forgave us all our sins. Colossians 2:12-14

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us. Hebrews 12:1

Praise him, all his angels, praise him, all his heavenly hosts. Psalm 148:1-3

The heavens declare the glory of God; the skies proclaim the work of his hands. Psalm 19:1-3

He's Gotcha Covered

Remember that scene from Sophie's Choice? Putting Reid on a school bus for the first time recently felt like selling him into slavery?  Maybe it's because mine are twins and I often feel like I'm always choosing one child over the other in a win/lose scenario. Maybe it's because we adopted them and I am overcompensating on a personal vow to never impose rejection on them.  Maybe it's because Reid has autism and I am practiced at hypervigilance. Maybe it's because I rode a bus to school when I was a kid and (even though I was verbal) didn't tell my mom all that happened on it. Maybe its because we homeschooled for years and I consider constant surveillance the norm. 

Whatever and however many the reasons, I just now (Reid is 13) had that quintessential experience of motherhood: waving to him from the curb having entrusted my child to that gape-mouthed orange whale, the school bus. 

This seemed an economical decision.  I had been driving a 40-mile round trip to his school twice a day.  As I put the wheels in motion, I kept my options open saying maybe he'd just ride one way to start.  I rationalized that he would mature from it.  I prayed about which driver would be assigned and what other students would be on the route. "Lord, let me know if he's ready for this." The transportation department called and I asked many questions trying to give a not too scary description of what Reid might do in the process of becoming familiar with the bus riding routine (ie. visit another student's front door, change the driver's radio station, check other riders' ipods, check out the view from other seats). It became quickly apparent to her that perhaps we should have gotten approval for an aide to ride with him.  Not wanting to be greedy, I let her run it by the powers that be.  In short order, Reid's was switched to another route where an aide rode along with the driver.

 

The day arrives; Reid is stoked; he skips onto the bus in his characteristic exuberant fashion. That was easy? Ugh...wait...what do I do now? The not knowing, the emotion, the fear.... I sat in prayer until the time I knew he'd reached the destination point where I'd usually dropped him off.  Now what? I'd have to wait 8 hours to maybe hear or decipher how it went. I called my mom to commiserate; no answer. I called a soul sister friend; left a message. I broke down in tears. I began my Bible study. It's still only 8:30am. These two extra hours a day could just change my life!

The phone rings. It is the sweet bus driver, Sandy, calling to tell me what a nice young man Reid is and how happy they are to have him on their bus. He did a great job with the seat belt. She thought I'd want to know!  Oh boy, would I. As our conversation continued I learned all about her. She has a grandson with autism; her husband drives a bus at the local Christian school my daughter attends; she prays every morning with some other drivers before they leave the depot. 

Could Reid be in any better hands? Now I realize that riding this bus is a privilege I could not withhold from him. Wow! Could I have planned that? No amount of my orchestration, manipulation, worrying or control could have master minded that scenario.  All I could think was, "Thank you Lord."  He seemed to reply, "I gotcha covered." The Lord has got us covered with His glorious shield--you, me, and Reid. Sometimes we realize it and sometimes we don't. This time I did.

Every word of God is flawless; he is a shield to those who take refuge in him.  Proverbs 30:5

Who of you by worrying can add a single hour to his life?  Matthew 6:27

Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.  Proverbs 3:3-6

photo credit:  www.cleanairsys.com

Who knew? it's National Sibling Day

Fortunately, I happened to call my brother today and got the news...which he heard on a local radio station driving across New York state. Since National Sibling Day falls during April I think it fitting to share a few resources I have found valuable for my daughter who has a twin sibling with autism. (Sorry David, I can't expound upon my undying love for you in this forum. That would be off topic.)


I love books and feel they hold the solution to almost everything. The recently published Newberry Award winning Rules by Cynthia Lord is outstanding. She writes as only another mom can, about her older daughter's experience in therapist's lobbies perpetually waiting for her brother (who has autism). The waiting room is such an appropos setting for a story about our families. They became a familiar landscape for us in those early years...as well as an accidental bonding time for one-on-one time with siblings...and a training place for listening ears. The sibling's awareness is shaped by hearing the therapist debrief with mom and the various moms talk to each other. I won't ruin the story but a twist in the plot occurs as the female character engages with another waiting client. It is a wonderful, realistic, aptly written story of inclusion in the end. It walks through pre-teen angst, love, embarrassment, and compassion all commingled.

The Ride Together is another great book for all ages. It is written by two siblings, Paul and Judy Karasik, about their family and their other brother with autism. The cool thing here is that Paul writes his contribution in comic strip drawings which capture the surreal and superhuman quality of our homes and circumstances. Judy writes her portion in traditional words which are always respectful, honest, and loving.

One more thing: Do you know about Sibshops? These programs are offered across the country often in Children's Hospitals or youth centers and are the brainchild of Don Meyer. They can be very valuable to our children at the right time. His resources will give you ideas of things to do at home.

OMG! In putting my hyperlinks in I ran across this great site. The SiblingSupportProject is paying tribute to brothers and sisters and their siblings with special needs. Cool beans! Guess who's behind it? Don Meyer. Thank you Don. Read them to your kids tonight! I'm so glad I called my brother today--by accident.

photo credits:  www.pent.ca.gov, www.cynthialord.com, www.theridetogether.com, www.siblingsupportproject.com