Heroes and Miracles

Sitting in the stands spectating at a Miracle League baseball game Saturday morning , Allie and I took a deep breath. Having just handed Reid off to his 1:1 buddy, we knew we'd have 2 innings of relatively uninterrupted talk time. (Quality time comes in various zones.)

At a whisper she confided, "guess what that lady just said to me?"

"Is that your brother out there? Then you are a real hero."

To which she politely replied and wisely corrected, "the real heroes are the ones who sign up and show up every week to make this possible. They choose to be here. We have to do it!"

True. The miracle of this local phenomenon is the dedication, enthusiasm, and sheer volume of volunteers who create a slice of heaven on earth.

Every Saturday 12 teams of special needs kids aged 5-18 of all abilities come bedecked in uniforms ready to play ball with whatever modifications they need. An amazing announcer, Alan Moore, treats each one as an MVP coming up to bat replete with nicknames and stats from the previous season. Whether they bat from a wheelchair, standing or hand over hand, every one has a buddy and everyone gets a hit.

Reid's first time at bat, he connected with a solid hit which Mr. Moore proclaimed "a home run!" With requisite prompting, Reid ran all four bases and enjoyed the applause from the stands. Well, can I tell you, every single time since, he rounds that diamond at full tilt in a beeline back to his seat in the dugout. Whether he's fouled, bunted or slugged it, the precedent has been set. Hit = homerun in his locked tight mind. One time he passed a couple other runners in the process. No worries, no tantrums; every game ends in a tie.

Coaches range from off-duty therapists to high school age siblings. The one on one buddies come out of the woodwork of the community at large to don a flourescent t-shirt and help. Every week I see another familiar face and ask how they learned about it. Parents cheer from the stands or visit like comrades in arms; brothers and sisters are proud; players grin ear to ear.

For that one hour a week, I feel like everything is really going to turn out fine. It is miraculous!

You are the God who performs miracles; you display your power among the peoples. Psalm 77:13-15

"The King will reply, 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.' Matthew 25:39-41

Lost Again

My favorite-movie-of-all-time is Lost in America. Albert Brooks' cracks me up as he whines, "I can't believe it, I've lost a whole woman. How can that be?" After a fight, his wife has hitched a ride with a redneck stranger to get away from the Hoover Dam and him. ARRGHH!!!! come his non-verbal groans of exasperation and helplessness. What to do now?!??! I know the feeling.

I could, but won't, make a recurrent series of Lost and Found Reid stories, for it happens woefully often. It is not something I'm proud of but, it is emotionally trying enough that retelling seems to be a coping mechanism. Will you oblige me?

Every time it happens, that Albert Brooks line runs through my mind. "I've lost a whole child!" It helps to have someone with me, someone who knows Reid, someone who knows I'm actually ultra-responsible. Just like the sister in Ian's Walk by Laurie Lears, Allie knows how he thinks. She accurately claims to have a sixth sense about where he will be.

I generally don't involve security right away because 9 times out of 10, we're the ones who find him anyway. He returns to where we last saw him like a little doggie wagging his tail behind. Pulling the alarm, seems to attract negative attention and be unnecessary. Strangers, no matter how well intentioned, have actually confused him in the past and set him off his logical course.

However, this time I was alone after the successful Kingsmen gig at the rambling 250,000 square foot Town and Country Hotel and Convention Center facility. Jim had left, the audience had cleared, we were putting amps away. Reid was within eye shot browsing sodas at the lunch buffet...and in the blink of an eye...argghh!...a whole child...@#$%^&!...lost.

This place is a huge maze of ranch-style bungalow cottages, two high-rise towers, courtyards, multiple pools, and at least 964 televisions. After Albert Brooks flashed through my mind, I had a vision of checking all 964 rooms with a pass key in a massive shell game to discover behind which door Reid would be happily watching PBSKids.

The usual protocol is this:

1. Pray

2. Fan out

3. Stay in the spot last seen

4. Wait

5. Enlist help (after a reasonable amount of time--15 minutes?)

In this case, I prayed the standard, "Lord, you know exactly where he is. Lead me to him I pray. And keep him safe from harm in the meantime." Called Jim to do the same. Then jumped ahead to #5 on the list. I didn't want to mess around since we were due in 30 minutes at a drama rehearsal that was 30 minutes away.

Power walking through this idyllic complex without passing go, I grabbed the first uniformed concierge I saw at Registration."I have a lost child, will you call security?" please.

No frantic first timer here, I knew the line of questioning better than she did.

"Yes, right away," as she dialed. I interjected the next piece of information, "He's 15, has autism, and is wearing a bright turquoise sh....

"Wait," something clicks in her mind, "I think I just saw him."

Praise God. Smooth way to answer prayer! Look how You led me right to this particular woman. Who needs security? You are good!

"Just a minute," as she hung up the phone. "I thought that was weird," she was thinking outloud. "He was just on those computers and...let me go check. I wondered why the door was open...."

Sure enough, after tracking her through a couple of keypadlocked doors, we spied him. Shoulders drop...exhale...found.

That had to be the fastest, timeliest, serendipity-est round of lost and found yet! Off we went to the parking structure...arm in arm, Cotillion style...only 5 minutes late for drama. In my mom's famous line to endorse the power of prayer, "You don't think that just happened, do you?"

Everytime, I am reminded of God's control over the details in our lives. He must certainly have extra guardian angels assigned to Reid. And His grace exceeds Reid's curiosity.

Do you have a favorite version of Amazing Grace? Like Albert Brooks and Easy Rider, "I've based my whole life on that song."

If I had a mind to brag a little, I could probably do it without looking ridiculous, and I'd still be speaking plain truth all the way. But I'll spare you.

Because of the extravagance of those revelations, and so I wouldn't get a big head, I was given the gift of a handicap to keep me in constant touch with my limitations. Satan's angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty!

At first I didn't think of it as a gift, and begged God to remove it. Three times I did that, and then he told me, My grace is enough; it's all you need. My strength comes into its own in your weakness. Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ's strength moving in on my weakness.

Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become. 2 Corinthians 12:6-8 The Message

How Do You Do It (with a smile)? Entry 4

The first family I pictured when we learned Reid had autism was the Hooker's. They sat right in front of us (in practically assigned seating) at church every Sunday. At the time, they were the only ones I knew who had a child with a disability.  Not bad role models, as you'll know after you read this guest post from Kristi Hooker.

Twelve years later, after alot of reading, training, and experience, Kristi and her husband John remain primary role models to us of how to joyfully serve your spouse and your family. We've moved back a few pews from our old spot, so their consistent presence, often arms around each other, continues to inspire and convince us that "all things are possible through Christ who strengthens us." (Philippians 4:13)

How do I “do life” with a severely-handicapped child?  Sometimes I do it well, sometimes not…but I always have the assurance that I do not walk this difficult path alone. 

Katie Jo was our firstborn on Thanksgiving Day in 1977, three years into our marriage.  She will be 32 in November.  Our sons are 29 and 27.  Katie Jo (KJ) is severely handicapped with cerebral palsy (from birth), unable to speak (with words), sit or walk.  She has a seizure disorder, a feeding tube and is microcephalic.  Her sleeping for the first 27 years was sporadic at best.  

This probably sounds pretty overwhelming but let me fill you in on what KJ has going for her: Since April of 2005, after being on whey protein for several months, KJ began sleeping through the night.  Now it is rare if she doesn’t sleep through the night!  What a huge blessing this has been!!  Katie Jo also has the best smile (and giggles) in the world (okay, I’m a bit biased!); she has a very sweet nature, taking in everything going on, maintaining eye contact with her bright eyes, responsive to everything around her at (we believe) at least a 6-year-old level.  

God graciously provided a ceiling lift in our home in October of 2001 so we can move our sweet 70 pound bundle from wheelchair to couch to mat on floor to bathtub.  This is just one example of the numerous ways our amazing God has provided for our needs over all of these years.  I cannot imagine doing any of this without God’s help, through various doctors, nurses, family, friends and even sometimes through people we didn’t even know!  Jesus has walked with us every step of the way, whether we always acknowledged that or felt it.  He is always trustworthy…and full of grace.  And He keeps teaching me things about my mothering.  

You see, I didn’t struggle that much with KJ’s cerebral palsy as a mom because it gave me more opportunities to nurture, to care for…but this wasn’t as true for our boys, who have suffered from intense worry and fear, as they were processing things from a child’s perspective.  Wow!  God opened my eyes through a book I was reading, then through Bible study questions in CBS, then through a trusted Christian counselor, who helped me write a letter to our grown sons in which I asked for forgiveness for ignoring or not seeing or discounting their fears in those early years, which led them into such pain as young men.  With the Holy Spirit’s help, we have all experienced a lot of healing, which continues to this day.  God has taught me that “stuffed, unexpressed feelings” do not go away (no matter how strong your faith)…they must be dealt with, which involves work and pain and tears.

As for Katie Jo, she is pure delight!  We believe she is the most spiritual among us.  God has shown us in various ways how He is ministering to her, which gives us such comfort.  Her smiles light up our darkest days!  I often talk with her about the ministry that she has…a ministry of smiles and joy and prayer.  KJ knows that Jesus hears every prayer she voices (inside).  I tell her that Jesus made her beautiful on the outside and on the inside (in her heart).  My husband, John, is amazing with KJ; he is totally involved in her care, which is a huge help to me.

One thing I (we) have learned over the years is to ask for help…and to graciously accept it.  That’s what the Body of Christ is all about…whether helping or being helped, both experience the blessing of God.  If we had not accepted help, I tell people I would probably be sitting in a corner somewhere in tears.  God never intended for us to go it alone; we need each other.

My best lifeline for “doing life with a severely-handicapped child” is being involved in Bible Study on a regular basis.  I have been involved with Bible Study Fellowship (BSF) or Community Bible Study (CBS), both of which involve reading the Bible, answering questions, sharing your answers in a small group and listening to a lecture on the material.  What a lifesaver to have the prayer support of the wonderful women in my group!!  

It is important not to neglect your spouse, either.  It’s good to “play together” as well as to “pray together.”  John and I have found that it is hard to stay mad at each other when we pray together! We are also involved in a small group at church which has been a place to be real, transparent and safe…truly a treasure.

Life is complicated…and more so with KJ’s special needs. I’m not saying it’s easy (at all) but we have found our life to be rich in God’s grace and full of joy amidst the sorrow.

Kristi Hooker           

Children Do What We Do--to Siblings

I have a fuzzy but distinct recollection of a print in my house growing up of Children Learn What the Live not unlike the one pictured here. I associate it with my mom who was a teacher and with the values she upheld in our household. I don't know what ever became of that poster but apparently the original poem was written in 1954 by Dorothy Law Nolte and was later made into an entire book about parenting and imparting values. At first glance it may seem hokey, but whatever your aesthetic, there is undeniable truth in the verse.

Children of all ages do learn more from what we do as parents than from what we ever say. It is not coincidence that many of the parents blogging about autism from a positive, accepting perspective have children who in turn, are learning and articulating gratitude and acceptance of their siblings. Here are two examples.

S.L. at Stop Think Autism uses a subtitle I love: "Having autism is not the end of the world...far from it." Her older child made a lucky clover at school and filled in the blank that she was "lucky to have.... a sister with autism." Her post embellishes how it really is possible to have healthy siblings in the same household with our kids on the spectrum. What's impossible is to "sell it too well" as her husband jokes about promoting autism as part of their unique family culture.

We bought that very same book she references, My Friend Has Autism, and gave them out as favors at Reid's 7th birthday party for our friends to read. My feeling was always that the more family friends who embraced our entire family, the better off we'd all be. That meant less embarrassment for my daughter, more informed playmates for my son, and more adults to support my daughter in awkward situations. These were sure to arise since we were spending lots of time homeschooling and going on fieldtrips with these families. I really needed them to back me up and bolster my intentional attitude at that point.

Estee at Joy of Autism (which is a great title I wish I could claim!) shares an essay written by her 16 year old son in gratitude for his little brother who has autism. Among the same homeschooling families we saw so often when the kids were 7ish,

were some slightly older, typically developing peers who would come over for facilitated playdates with Reid every week. Using Pamela Wolfberg's Integrated Playgroups model, they were modeling social skills, turn taking, eye contact, and the pure pleasure of play. Looking back with 7 years of hindsight, there is no question those "expert players" who were willing or whose moms made them participate, learned more than Reid did.

One of them recently graduated from high school--now a big, strapping football player. In a senior essay he reflected about what he'd learned from helping Reid over the course of 2 years. He was the oldest in a family of four and set the pace for his next oldest sister and brother to move into roles of regular weekly playdates with Reid. The youngest in that family never got his turn, as Reid moved into an all day school setting. But, little Carson used to ask, "when do I get to play with Reid?" Caring, encouragement, praise, acceptance and tolerance (see the poem) were what those kids were living! Those were esteemed values in the Ward family...and left a legacy of confidence, appreciation, love, and patience in our hearts as well as theirs.

A friend loves at all times, and a brother is born for adversity. Proverbs 17:16-18


Teach them to your children, talking about them when you sit at home and when you walk along the road, when you lie down and when you get up. Deuteronomy 11:18-20


Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is—his good, pleasing and perfect will. Romans 12:1-3

photo credit: farm4.static.flickr.com, oasisinternationalchurch.com, img.photobucket.com

Must History Repeat Itself?

Out From Under: Disability, History and Things to Remember is the title of an exhibition at the Royal Ontario Museum in Toronto through July 13, 2008. It promises to be a powerful display chronicling the history of disability through personal narratives drawn from 13 diverse objects including a braille watch, a ventilator, and a death certificate. Podcasts are available online in lieu of traveling to Toronto. Out From Under was produced in collaboration with students, scholars and alumni from Ryerson University.

Audrey King who donated the ventilator bed on display recalls, "Only years later, did I realize ... the embarrassment was not the assistive device, which in reality liberates ... It was – and still is – the bureaucracies and support system inadequacies that confine people and rob them of freedom and choice." Isn't that what Ari Ne'eman was saying on Good Morning America yesterday?

It is the same sentiment that inspired my friend, Diana Pastora Carson, to found Ability Awareness. Hear the hopefully familiar ring in her words about her brother, Joaquin. "The experience of being disabled by his environment more than his autism continues to inspire me" to give workshops that educate and change public perception. She spoke to kids and leaders last summer at SportsJam at our church as we learned from guest speakers with various special needs. We raised the kids' awareness and the kids raised money to purchase beach wheelchairs like the one pictured above for our local lifeguard stations. Diana is another example of how siblings rock the world! She is one of the speakers preparing for University of San Diego's Summer Autism Institute "Autism: Work With Me, Not On Me" coming up June 23 - 25, 2008.

Understanding history will spare us repeating it. The acceptance movement is not one voice in the wilderness. It is not even that new. But its time has come.


But remember the former days, when, after being enlightened, you endured a great conflict of sufferings. Hebrews 10:31-33


He was despised and rejected by men, a man of sorrows, and familiar with suffering. Like one from whom men hide their faces he was despised, and we esteemed him not. Isaiah 53:2-4


These are the words of him who is the First and the Last, who died and came to life again. I know your afflictions and your poverty—yet you are rich! Revelations 2:8-9

photo credits: phmovement.org; goflorida.about.com

Siblings Rock the World!

This speech given by Soeren Palumbo, a graduating senior, to his high school peers is a well-crafted and heartfelt call to action from a brother whose mentally challenged sister has taught him a lot. I give him credit for passing these life lessons on to others who have not had the privilege and benefit of loving someone with special needs. He defines discrimination against others especially those who cannot defend themselves. He does it graciously and unequivocally.

If you ever wonder why God allows disability, Soeren gives one answer. My daughter, Allie, is learning this too. She has said on more than one occasion that she wouldn't change her brother. "Life would be boring without autism." She also realizes that it has shaped who she is in terms of patience, tolerance, and maturity.  

I watched the movie Molly last night by myself. My family--although they are mostly out of town this week anyway--have grown weary of the disabled flick-a-thon. Not me. The brother in this story grew up mostly embarrassed of his sister who had autism. They develop a friendship when she miraculously gains mental capacity from an experimental procedure. As the progress wanes, he has to relearn what personhood and love really are. He learns it from a learning disabled orderly at the institution where his sister lives and from his sister. 

What if the real miracle cure is acceptance?

You hypocrite, first take the log out of your own eye, and then you will see clearly to take the speck out of your brother's eye. Matthew 7:4-6

However, the LORD your God...turned the curse into a blessing for you, because the LORD your God loves you. Deuteronomy 23:4-6

And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose. Romans 8:27-29

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