I picked Reid up early from school. We met Jim at the offices of an integrative educational specialist for an initial intake appointment. Had one of those lately? The encounter was awesome and admittedly atypical.
Jim tends to leave details and decisions like this to me, so it was not until we were in the waiting room that he mouthed (a little too loudly I thought), "What is this place? How long is this gonna take? and What do they do?" Classic!
I had already gotten a tour, met the players, and interviewed 4 satisfied clients. So, the organic, responsive, in the moment, alternative experience that ensued did not take me by total surprise. Jim had not. So it did.
His reactions crack me up. His humor afterwards illustrates how open-minded and fluid we've become. His mannerisms in the moment harken back to our common reference points. Where would we be without each other as bookends to hold up all that's gone between?
After 20 minutes in the waiting room (one broken photo album and a bent wastebasket later), Reid bulldozed through the door to scope this place out. Forget greetings or a potty break between appointments for the owner. Rather than block him or force a do-over with proper greetings, this purple clad female recognized his sensing curiosity. She immediately shifted from any protocol in order to follow his lead. Honoring the child, as they call it other places, she did what made more sense: treated him energetically.
We had expected her to politely grill us and review the ream of paperwork I'd dropped off beforehand. Instead, in short order, she had Reid and I both up on different massage tables tuning into Sennheiser headphones while she began Body Talk. (photo not actual size)
What about Jim? He had no idea what to do out in the hallway. I only peeked out the window once to see his dropped jaw and dumbfounded expression. The stereophonic rain and chimes sounded too good; the blanket on my feet too cozy to worry about whether he had gotten out his laptop or gone back to work.
After my balancing, I was terrifically calm, resonating with Reid on the comfy plum sofa. I could only grin watching Jim caddy corner from me in total bewilderment. He listened to the spontaneous specialist talk in intuitive circles, unable to nod or fill in her sentences. She may as well have been speaking gibberish. Later in bed, we debated whether he had actually spoken the words, "I don't even care," or just thought them.
Either way, our new friend had sized us up. These smart, engaged parents have been around the block. The mom is anxiety ridden. The dad focussed on results.
Bottom line: she won't make any predictions or guarantees, but she has complete confidence in her work. How long? How much? How often?How will we measure success? It can't be quantified. Finally, with a furrowed brow Jim did say outloud, "so, are we done here?"
Once we got home, he chuckled describing it to Allie as a "total twilight zone seeing mom in there drooling on a pillow." (exaggeration) At the same time, God love him, he is open to the value it may hold. Together, we are undying optimists hoping against hope to find the master key which will unlock the potential all agree Reid has in him. That is the unanimous common denominator that draws us back to each new specialist.
Oh Lord, it's hard not to be cynical when you've lost count of how many have claimed their work would be the bomb. The look on Jim's face told it all. What he wanted to do was hand them a list and say, "yeah, uhuh, we know...That's what they all say." "I'll call you when the results are obvious."
I don't blame him for I felt the same way. I suppose we want to be treated as colleagues for having acquired some knowledge along the way. Evidence of progress for all the time and money invested, would be nice. And acknowledgment, just for the record, that we are not starting at square 1 here; we are way into the double digits! So I wrote that list for Jim, in chronological order as best I can recall:
Parents who've been on this journey will surely understand what it's like to be held captive hearing suggestions you've heard before presented as if they are new under the sun; listening politely to the claims while calculating the hourly fees; feeling like "the sucker born every minute" on whom P.T. Barnum banked.
By now, I feel more like a battered wife returning yet again to be socked, disappointed, even burned, all the while wondering, just this once, if it could be different. Then choosing to go because, after all, you've got nowhere else to go. And you want so badly for the happy ending.
"Where there is no vision, the people perish." Proverbs 29:18
"Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, "This is the way; walk in it." Isaiah 30:20-22
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.
Jim and I had a pretty traditional wedding with one exception. In addition to Scripture readings, we had one of my college advisors read an excerpt--about "becoming real"--from The Velveteen Rabbit by Margery Williams. For whatever reason, I first read this book as a college student, not as a child. At that age, Jim and I prided ourselves on being transparent, vulnerable, honest, real. He liked me best without make up; I knew he was no poser.
I read the book to our kids when they were little and choked up at the new significance of this allegorical tale. It is a parable that goes way beyond the ostensibly sentimental story. It offers numerous applications on acceptance, motherhood, the power of love, and unconditional relationship. So many that another book, The Velveteen Principles, has been written by Toni Raiten-D'Antonio to analyze and put it into adult terminology.
Listen between the lines to Meryl Streep's sensitive reading of it with music by George Winston. When read with integrity, life experience, and heartfelt belief it still moves me.
The Lord has done a great deal of humbling in both Jim and I since 1986. We thought we were "real" then, let me tell you, it's all relative. Some wear and tear comes from the inevitable passage of time, relocating frequently, and becoming parents. Even more comes from being the responsible party for someone who is impulsive, inappropriate, embarrassing and at the same time, naive, well-intentioned and so precious to us. Whether you have a "spirited child," a "challenging child," a "special needs child," an "out-of-sync child," or an "indigo child," it is a high maintenance job! We are like EMT's or firemen who have acclimated to crisis mode. We become light sleepers, quick thinkers, fast actors, and smooth operators. No matter what happens we remain calm, consider all possible outcomes, and drive carefully but quickly with our sirens blaring.
I think the Biblical word for "real" would be sanctified. If the velveteen rabbit was saved by the boy from being left outside all night, we are saved by God and redeemed from the pit. Then bit by bit, loving and being loved to tatters, progressive sanctification happens. As we die to sin and live for Christ, we become more like Him. It is not about our salvation; it’s about how we live after we’ve been saved.
“Does it hurt?" “Sometimes,” said the Skin Horse, for he was always truthful. You bet. People laugh. People point. People blame. You get hit. You get bit. You are tired. “When you are Real you don’t mind being hurt.” “Does it happen all at once,” he asked, “or bit by bit?”He will be fine. We can do this. I know he'll get better. Why me? What do I do? I can't do this. What will the future bring?
“It doesn’t happen all at once,” said the Skin Horse. “You become. It takes a long time. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But those things don’t matter at all, because once you are real you can’t be ugly, except to people who don’t understand.”
The skin horse shares, "It was the boy's uncle who made me real." For us, it is Jesus who makes us real. Real enough to run wild as march hares into eternity, liberated from sin and the sawdust of our fleshly existence here. It is He who understands when others don't and loved us enough to shed his own blood in our place. We can't be ugly anymore. We are a new creation. God sees us through the blood of Christ and in His perfection. No longer shabby sinners but beautiful, perfected, sanctified, clean as the driven snow, pure like the lamb of God. Keep it real, friends.
Your new life, which is your real life—even though invisible to spectators—is with Christ in God. He is your life. When Christ (your real life, remember) shows up again on this earth, you'll show up, too—the real you, the glorious you. Colossians 3:2-4
But we know that when he appears,we shall be like him, for we shall see him as he is. Everyone who has this hope in him purifies himself, just as he is pure. 1 John 3:2-3
God, who got you started in this spiritual adventure, shares with us the life of his Son and our Master Jesus. He will never give up on you. Never forget that. 1 Corinthians 1:9 The Message
Do you know this movie? Holiday Inn is one of our all time favorite musicals. The movie covers the entire calendar from Valentines to New Year's Eve but, the message of this scene is appropo to Thanksgiving. Listening to his own chipper recording, reminds even Bing Crosby that thankfulness can transform any duldrum into gumption!
How true it is that a little gratitude changes our attitude! It's in the movies; it's in the Bible; it's real honest to goodness truth, as Mamie might say. Holidays can be hard times when the feelings and the circumstances don't match what we know to be true; our perceptions on those days may not be reality. We are staying put this year, in the clear, without travel or trappings to stress and strain. So, I will make my list now and carry it in my wallet for the next time I start to sulk.
I am thankful for:
1. a dentist I've had for 17 years
2. friends who pray for me
3. kids who are affectionate
4. money in the bank
5. kids who are readers
6. a husband who supports my success
7. a husband who can fix anything online and off
8. a husband who has loved me for 23 years
9. a free country where we can worship and study the Bible openly
10. knowing Jesus as a friend
11. a place prepared for me in heaven
12. living close enough to see the vastness of the ocean every day
Try it. Give me your top ten in a comment.
Sacrifice thank offerings to God, fulfill your vows to the Most High Psalm 50:13-15
I thank God, whom I serve, as my forefathers did, with a clear conscience, as night and day I constantly remember you in my prayers. 2 Timothy 1:2-4
...give thanks in all circumstances, for this is God's will for you in Christ Jesus.
Dads are noticeably absent from many parent support groups as well as PTA meetings and carpool. Usually, this is for good reason; they are working! My husband pointed this out while I was whining once about his lack of presence at my daughter's daytime school socials. At the time, she went to a private school in an over-the-top, affluent, community neighboring ours. There, many dads were visible and apparently self-employed or independently wealthy. In autism circles there is another, sadder reason for the female-dominated landscape. It is estimated that roughly 50% of fathers with children diagnosed with ASD, leave their families, unable to handle the emotional strain.
Just yesterday at a birthday party, we watched a single mom run the events alone enlisting other dads to string up and repair the pinata. I don't know the particulars of her divorce, but can easily project the familiar scenario. It saddens me because I grew up without a dad (for different reasons). It smacks close to home to see the dynamic perpetuated. Without question, having a child with autism adds stress to a household and a marriage. From the early days of diagnosis and intervention, to the financial burden of therapies and advocates, to the emotional waves of acceptance and recurrent loss, to the onslaught of puberty and unanswerable questions about the future, it is just plain harder than anyone expects.
Mired with unprocessed loss, I think spouses can sub-consciously blame and punish each other for the predicament. Rather than get angry at the child or the disability or at God, they bicker with each other. If I am honest, there have been many stressful moments, explosive bickering, even years of distance between Jim and I. At the same time, I praise God for the rich rewards of riding the storm and choosing to weather it together. What seals our vows, cements our bond and validates our marriage are the trials we've overcome. To have thrown in the towel would have robbed us of the sense of accomplishment we now feel as well as the sense of wonder at how God sustains those who seek after Him.
Jim and I arrived at a benefit fundraiser years ago. Along the manicured pathways of the hotel property, were posted the most dire statistics one could find, about marriage and prognoses regarding autism. (It was not Autism Speaks.) I can't say we donated much money that night. Who wants to support (what was portrayed as) a sinking ship ? And who wants to pay the ticket price the following year to be depressed by statistics? The hopeless portrayal may have pulled at the heartstrings of those not directly familiar with autism. But for me, it served to alienate and anger me. "It's not that bad!" I wanted to scream from the podium, "I need to hear hope in order to survive!" We did secretly gloat a bit that we were "not a number." The night was salvaged with a game of ping pong when we spotted the husband-wife team who were our educational consultant and advocate at the time. Serendipity, for when else would we have planned a social event with such real life heroes? Through tremendous trials of their own, they have forged an incredibly productive partnership. That's how it happens: the hero's pattern of hardship and recovery, hardship and recovery.
Back to my original point: this Chicago dad, James Harlan, is doing something about to bolster dads in the trenches. His wife, Debra Vines, started The Answer Inc. to serve the Chicago area autism community. Noticing how few men attended, he started "Just for Men" a support group specifically for dads. Contrast the character of Mr. Harlan with our neighbor who once offered this unsolicited commentary on us to his wife, "If I were Jim, I'd leave her." Unconscionable, that he would feel justification for that, let alone express the thought out loud. (And why his wife shared it with me, I'll never know either.) I can only be glad Reid didn't end up in his home, but rather with a dad like my husband.
Another voice in the darkness is Erik Weber. I wrote of him earlier as he mastered college life. Now a college grad, he has written a book, Autism for Dads: The Importance of a Father's Love, which is being sold by the Autism Tree Project Foundation. Erik's dad died suddenly in 1997, leaving Erik to grieve the "loss of the perfect dad" in ironic counterpoint to what he says ails the majority of autism dads: the "loss of the perfect child." In contrast to the statistical evidence, Erik's father left a legacy of love and faith that remain a "beacon of light to illuminate God's path for him." He attributes his faith in God and his dad's example to empowering him to defy odds and exceed anyone's prognosis for him.
Jim has a tongue-in-cheek expression to sum up his legacy to Reid. "Must be all that ball throwing," he says, at once self-congratulatory and self-deprecating. Of course, Jim did teach Reid years ago to play catch with a ball and mitt. There was a time they would do ten obligatory throws before dinner. It was tedious, as all new skills are for Reid to learn. At the time, I was homeschooling and ostensibly doing more with Reid, like covering the 3 R's.
I guess that's what makes it funny. We know it's not really the ball throwing. In fact, the synergy of other efforts--the osteopath, the neurological exercises, the mega-vitamins, the OT, the PT, the speech, the therapy--are all making the ball throwing possible. Nonetheless, that is the one quantifiable skill for which Jim takes credit. He likes to imagine the ball throwing was the floodgate for every other positive outcome.
The phrase is employed still whenever Reid reaches some belated milestone, say riding his two-wheeler bike or setting the table independently. Jim sounds off, "Must be all that ball throwing!" He's even used it in an IEP meeting. When something positive was reported, he caught my eye and mouthed the words, "all the ball throwing." It has, thankfully, become his most macho way of patting his male ego on the back for being an engaged father.
Rather than baseball, it is care giving that physiologically energizes women. In the early years, I now see how I gave and gave and gave to Reid without really wearying much. It actually filled me up with purpose and envigorated me. (This is not how-to advice for your marriage.) In contrast, fathering is less about nurture and more about preparation. As Reid has reached adolescence, many of the emotions I had at diagnosis have reared their ugly heads again, but this time from Jim's perspective. It is recurrent loss mixed with fear of the future which is staring us in the face. All of a sudden the future is now. (Couple that with the fact that Jim is a Futurist on his Strengthsfinder inventory so, he lives there anyway.) It's all good. God made us male and female, male and female He created us.
So God created man in his own image, in the image of God he created him; male and female he created them. Genesis 1:26-28
"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:32-33
So guard yourself in your spirit, and do not break faith with the wife of your youth.Malachi 2:14-16 If you then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give the Holy Spirit to those who ask him!"Luke 11:12-14
