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Graduation: Celebration or Distress?

June 3, 2013 By Leave a Comment

Graduation“Please join me in congratulating the graduates of 2013!”  These words will be echoed across gymnasiums, stadiums, and lawns all across the United States in the next few weeks as yet another class of students walk across the stage to receive their high school diplomas.  Graduation is typically a day to reflect on a great accomplishment and all the memories the graduates have made over the last twelve years together.  Some of these memories will be remembered for a lifetime, while other memories will be forgotten as new ones are created in the next phase of these students’ lives.

Up to this point, I have described a very common scenario for most high school graduates, but what if college, work, or military are not options for your child because of a disability?  What emotions begin to grip a parent as they realize their child’s best years are coming to an end?  Is the day of graduation a day of celebration or a day of distress for families affected by disability?

Tomorrow night I will be sitting in a gymnasium full of people who will be wiping away tears from their eyes as they ponder those very questions.  All eight of the graduates at the school where I am employed will receive a Certificate of Attainment, rather than a traditional High School Diploma.  All of them have diverse disabilities that make it difficult for them to be successful in both vocational and independent living environments.  The structure and support systems they have been acquainted with for so many years will soon come to an end.

I believe the equipping of parents, sense of community, and partnership between the school and parents mirror the relationship the church should seek to have with families with disabilities.  I know there are ministries reaching out to families with disabilities; however, much work still needs to be done.  The government has made great strides and advancements in seeking to meet many of these needs, but the body of Christ ought to be the ones leading the pack.  John writes in 1 John 3:16: “By this we know love, that he laid down his life for us, and we ought to lay down our lives for the brothers.”  We say we follow Jesus’ example, but I would contend we are more like Adam with the way we seek our own selfish desires.

I know firsthand, as a bi-vocational school teacher/associate pastor, the public schools are doing a better job in meeting the needs of people with disabilities than the church.  This is a very sad and disheartening reality.  How can we continue to allow secular institutions to out love those whom Christ has laid down his life for?  Churches need to think through the issue of meeting the daily needs of families affected by disabilities.  Equally as important, Christians in general need to step up to the plate and begin to reach out to these families.  When the church recognizes the need to make disciples of all nations and have a sense of outward focus, more community needs will organically be met.

The fact that parents are anxious about the next steps after graduation speaks volumes about local church ministries for people with disabilities.  I find it a bit troubling that Christian families affected by disability seek public supports more than church supports.  One may ask, “What needs to be done to tighten the gap between church ministries and people with disabilities?”  By raising up a generation of Christians who seek to meet others’ needs before their own more people affected by disabilities will begin to look to the church for help, rather than public institutions.

I will certainly shed some tears tomorrow evening; however, I will celebrate with these students.  I will remember their loud laughs, bizarre fictitious stories, kicking stampedes, scarring scratches, and most importantly the way they image God despite their disability.  God has used these students time and time again to teach me how to love others the way God would love.  I hope 1 John 3:17-18 (“But if anyone has the world’s goods and sees his brother in need, yet closes his heart against him, how does God’s love abide in him? Little children, let us not love in word or talk but in deed and in truth.”) pushes Christians and the church as a whole to repent of their shortcomings and begin meeting the needs of families affected by disability.  If this occurs, parents and families of individuals with disabilities will no longer be anxious about what comes after graduation, but will be eagerly anticipating the next chapter of their child’s life.

Throughout the upcoming year, I hope to provide practical ways for the church to begin to meet some of these needs, but we must start with love.

Seth

Filed Under: Anxiety, Change, Church Response

Seeing Red

May 16, 2013 By Leave a Comment

Jesse has an infatuation with firefighters. And, for that matter, fire trucks, fire engines, and firehouses.

Not unusual, you say? Little boys love firefighters, policemen, army men, you add? True. So, let me elaborate a bit.

He’s had 2 fire-themed birthday parties, dressed as a firefighter for 3 consecutive Halloweens, owns 4 fire fighter costumes, 1 fire fighter umbrella and raincoat set, 4 model fire house sets, 22 fire engines and 31 firefighter figurines of various size. Each day, he methodically lays out his firefighter costume, invites me into his “fire house” and shows me his gear before suiting up. We have made no fewer than 6 impromptu stops at fire stations we’ve passed on our journeys, and have waylaid something like 10 firefighters from their very real duties in order that Jesse might sit on one of the engines, wear a helmet, or ask “where is your black and white fire dog?” (He’s been often disappointed to learn that Dalmatians are mostly relics of a by-gone firefighting age. If he sees a Dalmatian in his firefighter story book, he LITERALLY expects to see one at the fire house. That literal nature? Yep, that’s ASD.) There are even firefighter coloring books, firefighter pajamas, firefighter DVDs. For a period of time, all Jesse would watch on television was a 1987 firefighter training video we were able to stream through Netflix. He could recite it word for word. It started out as cute. Sometime after viewing 15, it got downright annoying. He had all of us, and PARTICULARLY his older, emotionally labile brother Noah with ASD himself, seeing red.

As you’ve probably guessed by now, a restricted or limited interest (one that plays out in real life more like an obsession) is one of the hallmarks of an Autism Spectrum Disorder (ASD). These are kids who know every Star Wars character ever introduced, or who can name every dinosaur that ever trod the earth. But I was surprised to discover recently that the MORE restricted the interest, the HIGHER the anxiety – that the latter often incites the former. http://ultimateautismguide.com/2011/06/autism-news-anxiety-restricted-interests/  And, with anxiety being the defining emotion of Asperger’s and other ASD’s, it goes to reason that these kids are destined to experience both – some, more intensely than others. I thought Noah was one for restricted interests, but my sweet Jesse has shown the capability to outpace him red engine for red engine.

This morning, I walked into Jesse’s room and found yet another pile of engines and figures to be re-shelved:

Just a small selection.

But this time, instead of seeing the mess, I HEARD what he was saying. So I sat down.

“Can I visit your fire station?”

He grinned, freckles and dimples squinched up. “Yes. Yes, you can.”

Then I asked Jesse why he liked firefighters so much.

“Because.”

“’Because’ is not really an answer, Jesse. Why do you like them more than anything else?”

“Because they put out fires and save people.”

They “save people.” I exhaled, and squeezed my arms around him. I will do what I can, with God’s help, to make him feel safe and ease his worried mind.

And in the meantime, I suppose there are worse things he could be interested in.

- Sarah

Filed Under: Anxiety, Asperger, Autism, Change, Family, growth, siblings, Uncategorized Tagged With: , ,

State of Mind

April 9, 2013 By Leave a Comment

Noah is an easy crier. But he comes by this honestly. His linebacker-sized father can cry on a dime. Once when I was pregnant, I caught him weeping at a Huggies commercial.

Noah likes to hide his tears. Not even the doctor is permitted to see him cry when we’re at his office to have Noah’s strep or ear infections evaluated. There is no convincing him that it’s okay to cry. Instead, he hurries to find a place to retreat, cover his face, wipe his eyes with fevered intensity. Restaurant bathrooms are a good getaway, for there, he crouches under the downward tilt of the automatic hairdryer and lets the hot rush of air evaporate his tears.

I am not much of a crier, myself. I would rather put on a pair of oversized sunglasses and make a joke than I would let you see me ball. I find something of weakness in it, and so like Noah, I can find crying shameful.

So imagine my surprise this week when both Noah and I let loose a flood of tears over things that might ordinarily have seemed less than tragic. I have come to realize it was due in large part to our states of mind.

For Noah, he was overtired. There is no self-regulation in him (as is often the case for kids with ASD), so he will run until his legs can carry him no further and his lungs are set to burst with effort. He will seem perfectly modulated one day, and then the next, he’s on the floor screaming, terrorizing his siblings with extra force, refusing the simplest of tasks. We had, this night, mentioned the prospect of a small change, with opportunities for all the kids to weigh in. Just bringing it up set Noah to sobbing.

As for me? Well, I too, was exhausted. After hosting a birthday party for Jesse on Saturday that lasted well into the night with flashlight tag, Matt and I unloaded the entirety of our portable storage unit on Sunday. Every last box, bin, toy and furniture item. I managed to bruise my shin and torque my elbow, and the next day, I crawled my aching body to the bed for a two hour nap with Jesse.

I might have left it at that. I knew I was overtired. Instead, I put on my riding boots and went out into the field to get the pony and our thoroughbred mare. After I finally cornered the pony, who made me chase him a good 20 minutes before capture, and in a moment of apparently misplaced confidence, I swung a leg over him in the field, intending to ride him bareback into the barn for our lesson. The minute I got on, I instantly regretted it. He swung his head around, and took off galloping toward the herd, with me clutching like a monkey to his long mane. It didn’t last long. In a moment that seemed like it would last forever, but was in reality probably half a second, I was swinging over his shoulder and heading toward the hard, hard ground.

I fell off and landed square on my pride.

It was too much for my body to handle, and mentally adding it to a long list of second-guesses in this period of my life (“This, too, is doomed to fail!”) I just rolled over and started sobbing. Jesse was calling from the barn, “Mama, are you ok? I will call daddy!” All I could moan was, “Just give me a minute!”

Where the Lord Himself stepped in was with the snuffling sound I heard between my sobs. I felt something on my head and looked up. There, around me in a near-circle were all six horses in the field who had come to stand around me after I’d fallen. Mozart, the largest, and a famed steeplechaser in his day, had rested his muzzle on my head, as if to ask if I was alright. The Lord shepherded me back to the house with my 4-year old Jesse, who held my hand, and asked if he could take me to the hospital in his ambulance. Then, when we finally got back into the house, I felt the Lord stifling a laugh when I fell on the floor crying in Matt’s office, telling him what had happened and that I felt like a failure. Jesse jumped right in: “You can do it, mom! You’re still young!” And there the Lord was, in the end, as Matt looked at me, held my face in his hands, and said, “I have total confidence in you. I love you, and I believe in you.”

What I have learned is that humility comes before honor (Proverbs 18:12). And who else is more humble than s/he who cries? Jesus himself cried at Lazarus’ death – because of His personal loss and the great love for His friend. He is one acquainted with our sufferings – a “man of sorrows” who was despised by many (Isaiah 53:3). I understand now that sorrow is a perfectly acceptable state of mind; it isn’t shameful, and needn’t be hidden. Even if our state of mind is one of increased fragility, and the pain is deeper than usual, or the body hurts a little too much, we are known by a God who understands our tears, who loves us despite – and because – of them. When we’re very lucky, He even send us horses to comfort us as we cry.

- Sarah

Filed Under: Asperger, Challenge, Change, Emotions, Family, God's presence, shame, Uncategorized

Momentous Decisions and Memory Lane

March 29, 2013 By Leave a Comment

 

Today I met a cousin who flew into town with one of her high school daughters, to check out a local university. Wow, I can remember like it was yesterday (over 10 years ago) when our firstborn looked at colleges, this university included. All that pressure, pressure, pressure to decide the BEST education to prepare for a career for the rest of their lives … which school will steer them into their “life work”? Will they get accepted? Where will the money come from? What will they BE when they “grow up”?

This local university is prestigious, huge, secular. We home schooled our daughter, which (way back then) felt risky, but right for her, for multiple reasons. What if the colleges didn’t accept her transcript? Would she be penalized for not doing education the “normal” way??

I remember stepping out of a meeting to take her call. “Mama, I got IN!” In fact, she was accepted to every school she applied. Wow. Our church is not a particularly “dancing” church, but you can believe I D-A-N-C-E-D when she told me the news! In the end, she said “no” to this university, and chose a small Christian college, in another state, in the boonies. We loved it. She made great friends, became an excellent nurse.

Now, 10 years later, she is happily married, pregnant, and has decided to leave her career to stay home with her baby. What matters NOW in her daily life is whether or not she loves and honors her husband, whether she can make ends meet on a tight budget, and how interesting she can make CHICKEN, 5 out of 7 days a week ;) . College is totally in her rear view mirror, already.

Soooo, what about all those momentous decisions about education?? Were they a waste of time? No. Her education experience was significant, and shaped her.  (It shaped ME!) But her education is not THE thing. GOD is. God shaped her THROUGH education. Now He’s shaping her THROUGH marriage, a challenging pregnancy, and the price of chicken.

The primary thing is this: acquire wisdom; and with all your acquiring, get understanding. Prize her, and she will exalt you; she will honor you if you embrace her. Proverbs 4:6-8

God has been delightfully and completely UNLIMITED by everything WE felt were true limitations: how much money we had, which education path we chose, our inexperience, our children’s abilities and their disabilities. God has successfully used ALL the different education pathways (home school, Christian, charter, secular) to shape and steer our children towards HIMSELF.  Jesus has been/is The Ark for our children – not education, college or otherwise.

And the “momentous” decisions were then, as now, every decision we make (or not) to seek God.  To love Him. Some days that is harder than any exam I ever took.

But if God so clothes the grass of the field, which is alive today and tomorrow is thrown into the furnace, will He not much more clothe you? You of little faith! Do not worry then, saying, ‘What will we eat?’ or ‘What will we drink?’ or ‘What will we wear for clothing?’ For the Gentiles eagerly seek all these things; for your heavenly Father knows that you need all these things. But continually seek first His kingdom and His righteousness, and all these things will be provided to you. Matthew 6:30-33

My youngest called recently, from college, telling me how she had seen God help her that day. I tell you the truth – that matters to me more than any grade she gets.

The main thing IS still the Main Thing:

Q. What is the chief end of man?
A. Man’s chief end is to glorify God, and to enjoy him forever.

(1st question of the Westminster Catechism, the only question I remember!)

I can do that :) .

Joan

 

Filed Under: Change, Journey, Parenting, Uncategorized

Moving: A Prayer Answered and New Prayer Requests

March 16, 2013 By 1 Comment

For over two years, my wife Stacy Leigh and I have been praying that God would give me a ministry position which would provide for our family and grant us long-term stability. In the fight to overcome the difficulties of autism, both money and stability serve as great allies. But for the past two years, God has kept these two things from us so that we would learn to rely upon him alone.

Yet, finally after this long wait, on Sunday God called me to serve as pastor of Mount Tabor Baptist Church in Buffalo, Kentucky. As any good Baptist knows, the search process for both ministers and churches can be arduous, but throughout this process, we witnessed God’s grace as he connected us with a church that exceeds our expectations and as he gave me favor in the eyes of that church far beyond what I deserve. In fact, he has so guided us that I do not hesitate to say that it was God himself who called me as pastor on Sunday when the congregation voted.

That said, big changes are coming for our family. As I turn a page in my ministry, our family has begun packing for a move to a town an hour away where we have no connections apart from the church. As we make this transition, we ask that you, ChosenFamilies.org readers, pray for us since we know that many of you understand the specific difficulties we face due to Jude’s hidden disability:

1. Please pray for a smooth move and a quick establishment of routine for Jude.

2. Please pray for deep, meaningful friendships to grow, especially for my wife.

3. Please pray for wisdom as we choose therapists and preschool options for Jude.

4. Please pray for us as we navigate bureaucracy. Even though we are only moving a few counties over within the same state, we must reapply for the grant that pays for most of Jude’s therapy. We have already been warned that there will likely be a lag in services as we transition to new providers.

5. Please pray that I will learn to balance all my roles: husband, father, pastor, seminary student, etc.

Joshua

Filed Under: Change, Family

What Stays Behind

March 14, 2013 By Leave a Comment

We took our time with the move. It spanned weeks; nearly a month and a half from start to finish. Matt’s rationale was that it would allow us to get things organized a little at a time, rather than facing a tower of boxes to be unpacked in short, harried order. He was doing ME the favor, of course. I can tell you only one set of hands in our house is chapped from marathon handling of packing paper and cardboard boxes, and it ain’t Matt’s. (Matt will tell you that I married for looks and brute strength, so I suppose I’m satisfied with this arrangement….)

This past weekend was the last we would set foot in our old home. A few items in the basement and the garage, some trash to be bagged, the garage door openers set out on the island, and we were finally finished. The task of cleaning fell to me, and I went through each room, kicking up dust and memories in each one. I happened by chance to end my day in Noah’s room.

My mother asked me a few days ago if it was hard that Saturday when we tied up all the loose ends; when I cleaned the rooms my children had spent six years playing, sleeping, living in. I remembered my time in Noah’s room, and choked back tears. “Yes,” I said. “It surprised me, but it was.”

There were divets in the baseboards where Noah had pulled his storage bench off the wall to retrieve a fallen DS game, shoving it back with too much force.  There were synchronized stickers on his closet – hold overs from his “Cars” phase. Bits of scotch tape marred the wall where he’d taped up a star wars poster, near the door with the Jabba the Hut sticker, under which Noah had written “Jobu” because he didn’t know how to spell Jabba, and was apparently uncertain as to whether anyone would recognize the identity of the space villain without a name tag. Anakin Skywalker was spelled “Ancin” in similar fashion. The ceiling was punctuated with dents from Noah’s bunk bed mattress, reminders of nights spent changing sheets in the dark, and trying to shimmy a mattress back onto a top bunk because its occupant refused at all costs to sleep on the bottom bunk. None of these things – these bits of our life – were coming with us. They were staying behind. The hand that pushed the vacuum started to quake.

Then the vacuum hissed, and spat out into a perfect square of light on the carpet, the tiny key that Noah used to lock his journal. The very same key that had gone missing two weeks after he received the journal. I reached down and picked it up and from the corner of my eye caught sight of Noah pushing his bicycle up the driveway. It was the bike my dad had taught him to ride, the bike he liked to “escape” on, showing up randomly at various homes in the neighborhood – taking off before I could even notice he was gone. I thought then, “This is the last time I will watch him push his bike up this driveway.”

One last time.

That’s when I started to cry.

“But Ruth replied, ‘Don’t urge me to leave you or to turn back from you. Where you go I will go, and where you stay I will stay. Your people will be my people and your God my God.’” (Ruth 1:16)

The divets and marks and stickers were staying. The feel of the carpet under my feet, the way my voice echoed in the empty hall. These would be left behind. But the boy outside, all gangly arms and gappy teeth, and his angel-faced brother, and grinning, warrior sister – they were coming with. To make new memories, to mar new walls.  My people, my tribe, our God – they were all going with.

I ran a seeping nose across the sleeve of my fleece.  Then I pushed the escaped tendrils from my ponytail out of my eyes, bent down and put the key in my pocket.

It was coming with, too.

- Sarah

Filed Under: Asperger, Attachment, Change, Emotions, Family, Uncategorized

Shifting, Jesus-Style (In Which God Moves Us Across the Street)

March 10, 2013 By Leave a Comment

One of the most pronounced characteristics of my daughter’s hidden disability is how much she struggles processing transitions.

Which is inconvenient because that’s the one thing in life that will never change:
things will always change.

I can’t tell you how many birthday parties and playdates we avoided because I couldn’t predict how Cami would express her struggles with transitions. Sometimes the meltdown happened at the event location when we were leaving, and sometimes the meltdown happened later in the van on the way home. Every time, the meltdown happened: Cami laying on the floor or rigid in the chair, screaming, arms flailing, fists banging, legs kicking—no intelligible words, with actual tears and snot all over her face. It was intense, y’all.

Through the years, we tried different strategies to help Cami with transitions:

  • talking through the schedule ahead of time,
  • role-playing how to leave a location gracefully,
  • multiple warnings that time-to-leave was coming up,
  • a code word to use if either of us was feeling overwhelmed by a situation,
  • planning what my friend Betsy calls exit strategies.

There were stretches of time when the most effective strategy we employed was to simply stay home. We didn’t rearrange furniture in her bedroom. I let her wear the same shirt day after day (I washed it when she slept). I didn’t plan anything for the week of Daylight Savings Time, knowing it would take the entire week for us to adjust to the time-keeping shift. As she’s grown older, Cami’s transitioning ability has increased in its effectiveness, although we still need at least a week to adjust to Springing Forward.

A few years ago, when Michael and I started the conversation about buying a house, Cami’s struggle with transitions was foremost in my husband’s mind. We talked about it as a family for at least two years before we looked at our first real estate listing. We stayed on our knees through the entire process, giving God our request list but knowing He would work out everything for our good. I didn’t realize, however, how good He would work everything out where Cami was concerned.

We read about and saw pictures of places all over Northern Virginia. We drove around and looked at the outside of countless houses, checking out the neighborhoods, calculating Michael’s commute time, gauging how long it would take us to get to church. Yet we only viewed the inside of a handful of houses, all in one weekend. None of the houses fit us at all. As I walked the dog one evening, I found myself literally crying out to God, tears running down my face as I realized I didn’t want to leave our street. We began our house-hunt wanting to buy a single-family home with a little land attached, with room to garden and a covered porch to enjoy. We ended our house-hunt asking God to give us a home to buy on our current street of townhouses. We love our neighborhood, and we’d spent six years cultivating relationships on our street. There was only one drawback to the new house hunt: the only unit for sale on our street was far beyond our price range.

We decided to wait and see what God would do. Even though we’d previously been inside it, we toured our neighbors’ house, looking this time with buyers’ eyes. It had plenty of room inside and out, with a garden already established in the backyard. Although it didn’t have a covered porch, it did have a nice deck overlooking the woods. I asked God to make it possible for us to buy their place. We continued to pray and wait on God’s provision and timing.

Two weeks later, as I worked in our front yard, a different neighbor came across the street. “I heard you’re looking for a place to buy,” he said.

“We are,” I said.

“Would you and Mike be interested in buying our place? We found a house a few blocks away we want to purchase.”

You know those moments that charge the atmosphere with their holiness, when God’s presence is palpable in the air? the moments where you feel God shift your reality as He performs His will in your life? It was one of those moments. God rocked my world as I stood there on the front sidewalk of the house we had rented for six years. Within the week, my husband and our neighbor discussed a deal to buy the townhouse, which was smaller than the one we’d prayed for, but had an updated kitchen and bathrooms, fresh paint in every room, and new carpets. The men shook hands on the terms, then we called our real estate agents. Within three weeks, we closed on the home God hand-picked for us and moved across the street.

Cami still struggled with the transition involved in moving out of the house we had lived in for six of her ten years of life. Yet where God had rocked my world, He steadied my daughter’s world. He gave us a house with a floor plan that mirrored our familiar space: different enough for us to make it our own, yet similar enough that Cami’s adjustment was minimal. Instead of Cami’s bedroom facing the woods where she could sit at the open window like she used to, her bedroom now faces the parking lot and our neighborhood’s common areas, giving her ample opportunity to see when her friends are playing outside and to join them. Instead of one master bedroom and two tiny bedrooms, God gave us a house with two master bedrooms, with room enough for Cami to spread out all over her own room instead of spreading out all over everywhere else. Although it took a few weeks for us to unpack and settle into our new home, Cami spent that time in her familiar neighborhood with her familiar friends, building fairy houses and riding scooters and drawing on the sidewalks with chalk.

When we moved, we didn’t leave any of her friends or any of our neighbors behind. Instead, we planted our feet firmly on the street where God had already planted our hearts.

With no transition meltdowns, no time-to-leave warnings, and no exit strategies needed.

I like shifting with Jesus much better than trying to shift on my own.

Grateful for His gentle, steadying hand,

Candi

Filed Under: Change Tagged With: , ,

How Hard It’s Not

February 28, 2013 By 1 Comment

Today I sat down to write this entry, intending to enlighten, amuse and exhort the ChosenFamilies.org readers. In regaling you with stories about Noah, I reveal to you a window through which you might view the reality of life with a hidden disability. That life is often awkward. It’s challenging, and can be complicated, but it’s funny. There are many happy endings as we learn from Noah and his Creator. Our burden is comparably light. Even as Jesse’s own diagnoses have emerged to intensify our circumstances, I can’t plead impossibility of burden. I particularly cannot plead it today, when I opened my laptop this morning, and found this:

http://usnews.nbcnews.com/_news/2013/02/27/17112877-cops-two-boys-grandmother-found-dead-after-she-takes-them-from-day-care?lite

Another lurid headline pulled me in. Then I scrolled to the bottom, and there it was:

“Jeremy and Brenda Perry, parents of the two young boys, told NBC Connecticut that Denison had a gun and she had a mental illness.”

A mental illness. A reference to a “wide range of mental health conditions — disorders that affect mood, thinking and behavior,” according to Mayoclinic.com. A pattern of being that painted the whole canvas of Debra Denison’s life, and from which there was no escape. My mind went to a dark place as I imagined how she could possibly have thought that killing her grandsons and then herself was the right choice – if that was, indeed what happened. My heart aches for the Perry family, as I wonder what the prologue to this story would have revealed: why Debra was permitted to pick the boys up from daycare? Whether she was medicated for her illness? Whether she was being monitored by a psychiatrist or other mental health professional? Why she had access to a gun?

I wonder most of all why the healthcare system in America is failing those with disabilities. “But your family is doing fine!” you say. Why hasn’t the system failed Noah, or Jesse or me? Because we’ve probably spent $50,000 on medication, therapies and doctors (this is a conservative estimate). Because we’ve worked tirelessly at early diagnoses to alter history’s course at the earliest possible junction. Because we are our own best advocates and we never rest at getting “better.” We are our own champions. God has blessed us in giving us to each other. Yet there are those that must manage mental illness on their own. This is nothing short of impossible, as the way of thinking needed to get better is the very thinking absent from the start.

There is no “funny” in this post. Which is too bad, because Matt never ceases to be amused at the way I laugh when I’m writing (no one thinks I’m funnier than I am, unfortunately). I wish I could be more light-hearted today, but I am hearing the voices of those who are un-medicated, undetected, untreated, unhappy.

“He died for us so that, whether we are awake or asleep, we may live together with him. Therefore encourage one another and build each other up, just as in fact you are doing.” 1 Thessalonians 5:10-11.

I am lifting them up today, and I am lifting up those who care for them. I am praying for them, and asking the Lord to let us better see and help them whose lives are harder than ours.

- Sarah

Filed Under: Anxiety, Asperger, Challenge, Change, Church Response, community, Family, General, growth, Uncategorized

Open for Business

February 21, 2013 By Leave a Comment

Routine tasks often prove the hardest for my Noah. Tasks of a higher emotional and intellectual input are nearly impossible. This move of ours – wherein we moved a mere 6 miles from our former home, kept all children in the same school, and did it all slowly, as unhurriedly as possible over the course of a month so as to prevent any psychic earthquakes – sent Noah into a tailspin. I should have guessed this was going to be the case. There is only so much cushioning you can give an Aspie when his world begins to change. So, in the wake of the final push of our move, I should not have been surprised that Noah’s behavior fell somewhere between chaos and rage. On the day itself, Noah blasted past us in the foyer, hurtling down to his room, yelling over his shoulder that he had a project he was going to do. That this was his “plan for the day.” Before we settled into our new home, Noah had packed everything from torn posters to bits of tape he’d salvaged from the walls. There were figurines with missing heads, carnival slinkies stretched beyond use, shoes with shredded soles. He was unable to distinguish between useful and superfluous, between broken and functional. Everything that could possibly be thrown away made it into a moving box and came with us. Unpacking this all gave me apoplexy. For an almost 9-year-old, a request to send him to his room to pack his belongings is a natural one. One assumes that there will be some sort of self-governance that eliminates the moving of – for lack of a better term – “junk.” But Noah’s “junk” moving was just the beginning. Once at the house, this “project” of his ate the better part of a day, and I didn’t bother to check its progress because it kept him out of my hair. When he yelled from the bottom floor, insistent that I come see what he’d done, my jaw hit the floor. He opened his closet door to show me this:

Getting down to business.

“It’s my DS store,” he said. And sure enough, on every shelf, Noah had aligned his DS games with cases upright and inserts facing out, just as they are displayed at Gamestop. Now this was a puzzle to me. The boy who packs things like books with missing pages, or plush animals vomiting their stuffing; who throws every lego he owns in a giant box, but tosses the instructions (insuring that he’ll never construct the pieces from the set in their intended way, again), THIS boy had taken the case for every DS he owns and arranged them with the precision of a scientist. WHY? This was also a puzzle to me. All I can imagine – and this is where I must be content to let the questions end (because sometimes guessing is all I’ve got) – is that this was Noah’s way of not only controlling his environment, but controlling (channeling?) his emotions through the precise, repetitive task of touching and working with the familiar things that he loved.

Grace, ever the pragmatist, folded her arms in front of his closet. “Uh, that’s great, Noah. But you have one little problem. Where are your clothes going to go?” We still don’t know. For now, they’re still mostly in boxes on the floor. His room’s a mess, and so is mine. We’re not quite open for business. But we have a little peace.

~ Sarah

Filed Under: Asperger, balance, Challenge, Change, Emotions, Family, Uncategorized Tagged With: , , ,

There and Back Again

January 20, 2013 By 1 Comment

We bought Cami a new backpack today.

Why does a homeschooler need a backpack?

Because we started back to Bible study this week.

We’ve tried to attend the weekly women’s Bible study since we joined our church seven years ago. Some years, Cami connected with the child-care workers and found a niche where she was if not understood, at least accepted. Other years, as Cami entered elementary school and the number of homeschool students attending Bible study with their moms increased, one weekday morning used up all of her coping energy for the entire week. The discomfort progressed to where we spent Saturdays, Sundays, and Mondays preparing for—and Wednesdays, Thursdays, and Fridays recovering from—Tuesday morning Bible study.

So we did what I’ve always done when Cami encounters too much input: we stayed home. While it may feel like a defeatist attitude sometimes, the reality is that home is safe. Home is consistent. Home is known. Meltdowns at home don’t last as long as meltdowns in public.

Or maybe it’s just that at home, she can take as long as she needs to decompress and she won’t feel rushed or abandoned. We can retreat to our separate corners, and no one is watching with judgment or misunderstanding.

Yet every semester when the list of Bible study classes is published, I’ve prayed, “Now, Lord? Is it time to go back yet?” I used to think women’s Bible study was a “should”: we’re a Christian family, so we should go to vacation Bible school every summer; we should participate in the church’s homeschool co-op group. We should attend women’s Bible study every semester.

I think God has finally straightened out my heart on this issue. He isn’t a God of “shoulds.” He is a God Who marks out specific paths for each of us (Hebrews 12:1), a God Who has already recorded every one of our days in His Book (Psalm 139:16). He is a God Who created Cami exactly like He wants her to be—and me, also (Psalm 139:13-18). He made me to need community, and that’s been a hard thing to come by. But He hasn’t abandoned me or left me community-less. This Chosen Families blog is absolute evidence that He knows what I need, and He faithfully provides what I need (2 Peter 1:3; Jude 24-25).

This semester, when I looked over the Bible study class list, I felt the Holy Spirit nudge me as He whispered, “There, Candi. That one.” So I registered. And we went. Cami packed her old backpack—the one I bought her the night before she started public school kindergarten, the apple-green kid-sized one with the side pockets and rip on the inside, the one too small to hold her art kit and her sketch pad and all the books she’s reading—and we set our alarms to wake up extra early.

On Tuesday morning, I couldn’t help it: I snuck a peek through the window to see how Cami was doing. It broke my heart to see her sitting by herself, with no one around her, with her back to the rest of the room, reading her library book. I guess I thought she’d make friends quickly. Or hoped, anyway. As I joined the line of women down the hall waiting to purchase their books, I said to the friend I was standing with, “What am I thinking? Maybe I shouldn’t even buy a book. Maybe this won’t work at all.”

It was my friend’s voice, but God’s heart that encouraged me. “Give her some time. Every transition takes some adjustment time. Maybe that’s all she needs is time to adjust. Maybe that’s what you need, too.”

I bought the book for the class. I believe God called me back to weekly women’s Bible study not for the study part as much as for the community part. I choose to be obedient. It might be awkward at times, and it’s already uncomfortable. I can participate in women’s Bible study this semester—finish my weekly homework, share openly and authentically in my small group, and keep Cami’s schoolwork on track while helping her heart feel free to make friends—only with Jesus’ power and anointing. Cami’s having a new backpack can only help, right?

Here we go.

Resting in God’s faithful provision,

Candi

Filed Under: Change, Parenting, Social skills Tagged With: ,
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