Top 10 Tuesday

Top 1o Things I Appreciate about Reid's New School

10. their intentional "Empathy, Invitation, Plan" approach

9. a preponderance of male staff (which is a subtle but critical component to Reid's adolescence and my husband's engagement)

8. allowance for some naturally occurring elbowing and shoulder tapping (who wants to raise a robot)

7. the "practice makes permanent" (not perfect) ideal

6. true partnership with parents

5. daily interaction with the local community (this is valuable even when it, especially when it breaks down)

4. a careful, positive use of the power of words to affect behavior

3. the cohesive team approach of the staff and students

2. a palpable acceptance kids can feel (which fundamentally enables them to trust teachers enough to be vulnerable and learn)

1. the occasional photo text they send that's worth a thousand words (see left)

Last June when it became obvious we had to find a new placement for Reid, we revisited a place I had loved 3 years prior. Pioneer Day School has only improved since then and retained it's intentionally small size.

The teddy bear of a director sat catty corner from me at a conference table explaining the founding principles of his school. Resisting the urge to hug this man, I leaned back--likely scooched my chair away--so as not to block my husband from catching the full drift of truth he was speaking. I wanted them to relate man-to-man. As Mr. Banks said in Mary Poppins, "Enough of this slipshod, sugary, female way of thinking."

Hearing about empathy, social thinking, music instruction, and kinesthetic learning from a beefy man who's educated dozens of challenging boys is very different than hearing your wife say, "let's wait til he's calm to finish the homework." Jim Leiner described how he trains his teachers to first give empathy (ie. "I know this must be hard for you Billy, math was always difficult for me too"); then offer an invitation ("If you'd like I can show you something I learned that helps); and make a plan ("How 'bout if we do 5 problems today and save the rest for tomorrow?")

In one sitting, what my husband used to perceive as "coddling" became logical, within reason, even wise. We listened (well actually, I nodded like a bobble-headed dashboard ornament) then toured the school. This move would represent a return to our original follow-your-gut instinct on what was best for Reid. By moving him, we would abandon the "research-based," straight behavior mod program for something far more holistic. It was a battle between the head and the heart for both of us.

As we got out to the curb in front of the building, I refrained from jumping for joy. I don't like to stack the deck or be subjective. (ha!) My new intention these days is to submit to my husband's wisdom.

Our other set of eyes was a dear friend Kate, who has credentials up the wazoo from evaluating classrooms around the world for a living. Even at first glance observing the classrooms of Pioneer, Kate noticed countless examples of student work and real curriculum which indicated a place of learning. This was a vivid contrast to the starkness of the previous place where the curriculum really was behavior.

Was it just me? Or was this gonna be unanimous? After giving her professional opinion, Kate asked the obvious, what did I think? As I stifled my enthusiasm still wanting Jim to arrive at his own clarity, she ribbed me with the now infamous line, "He had you at empathy!" She knows me too well.

Confirmation came after the 30-day placement meeting where the aide, director and teacher reported how Reid had taken to this place like a fish to water. The most pleasant surprise was that he had done a page of division problems after being shown and invited to practice. (Another distinction since the previous placement had removed him from the diploma track and all but tabled academics in favor of teaching compliance.)

As we left that meeting my husband elbowed me in the ribs, "ok now I wanna hug the guy!" (I resisted the irony of yapping back, "hands at your side; personal space.")

Parents Rule!

Kids drool? well, not exactly.

On an hour respite from a trying Thanksgiving weekend, Allie, Kat and I discovered these bracelets. We each picked a different inspirational mantra that suited us perfectly. They seemed custom made expressing our individual approach to all that life was dishing out in the moment. The serendipitous finding buoyed us through the rest of the day affirming our particular piece in the family puzzle.

Allie's says this:

Kathryn's said "Don't Settle for Less."

and mine:

Riding out a wave of medication, scary behavior, and holiday expectations had me feeling like the kindergarten Dutch boy with his finger in the dike determined to hold back the sea. Impossible and solely my responsibility. Now, Monday morning, I am grateful to run across this draft of a post which reminds me of parents who've gone before and Redefined the Impossible...a future for kids.

Check out Berkshire Hills Music Academy, an incredible post-secondary school in a collegiate setting for young adults with disabilities to pursue their musical passion. Living in dorms with support, they learn life skills and academics in a music-infused curriculum. I love the sound of that! And the fact that they take it to the streets and perform in the community. How did it come to be? Parents founded it. Out of necessity, no doubt.

Another example you may have seen last month in Wired, is of Thorkil Sonne, a parent, who formed an IT consulting firm in Denmark called Specialisterne that trains employers how to maximize the unique talents and productivity of Aspies.

My friend, Jody Mlynek created Logan's Friends to help churches around the country be more inclusive. Her business was born through her experience starting a program to serve her own son, Logan.

Do you know others?

In most cases, a parent has the greatest motivation to ensure his child's future. Many fabulous tutors and therapists have circulated through our home, but you know what? They keep leaving to get married, have babies, or get Ph.D's. We remain. I was feeling the weight this weekend of having the kid only a mother could love. It's heavy. And I do. Undoubtedly, parents have the strongest love and most relentless pursuit for their kids' potential.

Indeed, our Father in Heaven has an undying hope for our future. Since He created us, knows us best, and delights in each of us, He is absolutely the one most inspired to prosper us, see that our joy is complete, and give us hope. His is the best plan of redemption for our permanent future: not a special school but a mansion with many rooms awaits. He went to great pains to get us there. He sacrificed a piece of Himself to make it possible. He designed Plan B when Plan A didn't work. He never leaves us or forsakes us.

What a role model. Parents rule. God reigns!

The hired hand is not the shepherd who owns the sheep. So when he sees the wolf coming, he abandons the sheep and runs away. Then the wolf attacks the flock and scatters it. John 10:11-13

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 3:1-3

For nothing is impossible with God. Luke 1:36-38

Top 10 Tuesday

Top 10 Ways to Engage with a Teenager

(ASD or not)

10. Lay in the hammock

9. Smell something cooking on the stove

8. Crawl inside the netted trampoline at dusk

7. Have a silly "yes-no" battle

6. Crank up a song on the car radio

5. Look through some old photo albums

4. Share a pair of ipod earbuds

3. Chill in the car for a coupla' minutes after parking in the driveway

2. Take dramatic deep breaths

1. Share a bag of Fritos

So often my attempts to engage Reid are really demands I make of him. No wonder he resists. I was sufficiently trained by Serena Weider in the Floortime modality years ago but I need reminders that goofing off is productive. Is it time to update the days of Playmobil guys and Winnie the Pooh to something more relevant to teens? What percentage of our dialogue with teens--on or off the spectrum--is inquisition vs. engagement, threatening vs. listening, corrective vs. receptive?

An adult psychologist in San Diego, Dr. Alan Lincoln, has an adult brother on the spectrum. He shared a story once that stuck with me. He was particularly busy one weekend when his brother called for his weekly visit. The NT brother felt guilty for being distracted and not as emotionally available as usual, pulled in a tug-of-war of demands on his time.

The ASD brother grabbed something from his brother's fridge, sat on his brother's patio briefly, then headed out the door saying, "thanks I feel much better now." His brother's relational needs were different from his own. It doesn't take as much as we think to make someone feel welcome, accepted, and connected.

Truth be told, Allie does most of these better than I do.

If anyone says, "I love God," yet hates his brother, he is a liar. For anyone who does not love his brother, whom he has seen, cannot love God, whom he has not seen. 1 John 4:19-21

Abide in Me, and I in you. As the branch cannot bear fruit of itself unless it abides in the vine, so neither can you unless you abide in Me. John 15:3-5

The LORD will fight for you; you need only to be still. Exodus 14:13-15

Who you gonna call?

The pack's all back! Even Benny our faithful mutt has a grin on his face. It just feels right to have Jim home after a 2 week absence. As we finished our GF waffles this morning, he and I got sucked into Facebook catching up on a new batch of our high school chums. Picture us in the zone, eyes squinting, fully absorbed in the glow of the screen. All of a sudden, Reid cried out in uncharacteristic maturity, "Mom, what are you doing?!" I looked up to see smoke billowing out from the sauce pan of maple syrup I'd left on the gas stove.

"Yikes! Good call, Reider." "You did the right thing to tell me." "You know what they say, where there's smoke there's fire." "That could have been dangerous." Reinforce, reinforce, reinforce. I did I tell you as I airlifted the blackened pot outside to the brick patio and instructed Reid to turn on the fan (whose noise he hates unless he flips the switch himself).


Are there any stranger events to celebrate, than the ones in which we rejoice? This was a good omen for future independent living ability; a sign of higher executive function; a reason to celebrate. I remember my similar elation the first time Reid got spooked to be separated from me at Target and called out, "Mom, where are you!" This morning marked a milestone. Who cares about the pot?

Several years ago Jim fell off a ladder while pruning trees. He was home alone with Reid at the time since Allie and I were walking the dog around the block. More alarming than getting the wind knocked out of him was the realization that Reid had not noticed his injury. Danger Will Robinson. Many times since we've wondered how to explain an emergency to Reid. Asked ourselves: does he know to get help? Could he describe what happened? Have we taught him about 911? All those "life skills" topics that aren't probably covered at school and don't arise often enough for repetitive teaching. Those critical skills required for independent adulthood.

After all the praise for doing the right thing this morning, Reid puffed out his adolescent chest and added, "we should call a plumber." Doh! Back to the curriculum to review those community helpers. It's all so confusing....police, firemen, AAA, plumbers. Who can keep it all straight?


Watch! Be alert! For you don't know when the time is [coming]. Mark 13:32-34

After the earthquake there was a fire, but the LORD was not in the fire. And after the fire there was a voice, a soft whisper. 1 Kings 19:11-13

Yet I call this to mind, and therefore I have hope: [Because of] the LORD's faithful love we do not perish, for His mercies never end. Lamentations 3:20-22

Trip to the Dentist

No autism blog would be complete without a section on dentistry.

Here's one and here and here. For autism moms, dentist stories might be the equivalent of childbirth stories for other women or war stories for men a generation ago.  We all have at least one and tell it like a badge of honor or a rite of passage into the ranks. The difficulty achieving basic dental care is one of the many, many things I never imagined I'd be dealing with like potty training a teenager or soundproofing my house so my neighbors don't call CPS. Compromising positions which take "character building" to an Olympic level. Incidents we know are unconscionable to most yet, totally understandable to us; they go with the autism turf. 

So, here is one of mine. We switched from my beloved dentist to a pediatric dentist recently in order to better serve Reid's needs. The new dentist has a pimped out office with ocean murals, flat screens in the ceiling and a Blockbuster selection of DVD's and video games in the waiting room.  Even with all that--perhaps because of all of that--Reid was unable to hold still enough for long enough to get the amount of sealants and work done that had accumulated in the years that we'd been trial and erroring it with my patient, prayerful hygienist.  So Dr. Ocean Dentist for Kids got the job of referring us to Children's Hospital for the full treatment under full anesthesia.

We survived that and I will disclose full details in a longer post later.  For now, let me describe the more recent check up that followed back in his deluxe office by the beach.

Like any good mother, the night before the appointment I was flossing his teeth and what to my wondering eyes did appear but, two chipped teeth! The bottom two, right in the center. Horror of horrors! How did this happen? When did it happen? What's to be done? Oh no! not this! Caps? More anesthesia? What will this mean ?

To answer the "how" question, I didn't have to wonder too hard. Reid chews, a lot. Whether to relieve stress, receive proprioception or just test the strength of his teeth, I don't know (that would be the why question). He just does. Any number of things could have been the culprit. Hard objects, like buttons off every single polo shirt, rugby shirt and even some pants we own. His old school allowed gum chewing as a compensation which was not ideal since he swallows it. At age 14 though, the new school deemed the chew toys totally not age appropriate and the gum-in-school rule totally not bendable.  So, he is learning--the hard way--to just not chew.  Last year, we went through one shirt a day, literally. I began to shop at thrift stores moving to the second "R" in our mantra, reduce, re-use, recycle. Unable to reduce the number of shirts we were consuming, I could at least re-use ones already manufactured and not put an unfair drain on the sweat shop labor of Taiwan. At $4 a shirt, it was costing us more than a Starbucks fix.

Reid tests his teeth on other materials besides fabric: pen caps, ink pen chambers, plastic packaging, Unifix cubes, marker tops, pencils, credit cards, bottle caps. He has Crocodile Dundee beat. So, I knew not when but, could easily imagine how the bottom teeth had chipped.

To save my pride at least momentarily, I decided to wait before divulging this information to the hygienist. I'd wait and see if she noticed. She was new. Emerging from the aquatic hallway to debrief with me afterward, she seemed to think she "got a lot of work done." Is it ever as much as my daughter gets? Ever a full cleaning? "He has more calculus than plaque", she shared. I have gone to a dentist twice a year for my entire life and I have no idea what calculus is. Is this "new dentistry" like new math and I have to pick up a new lexicon. Or is it metric? 

I asked, but even the answer didn't make sense. I decided she was young and on new turf. Perhaps she couldn't translate her jargon into my plain old English. When I brought up the chipped teeth (secretly hoping they would have spontaneously healed by then) she launched into another foreign diatribe (I know some big words too, missy) about # 8 and 9 being affected......blah blah blah...subcutaneous... I missed a lot of it before asking, "Which ones are 8 and 9?" "The two front teeth," she says. There's hope for her yet.

When I explained my best guess of how the teeth had gotten chipped, her inane self-evident reply was, "that's not a good idea. You shouldn't let him do that." It was then I realized she must not have kids, of any age, or any kind. She must never have babysat or had a younger cousin. Do I look stupid? Obviously, this is bigger than simply being told it isn't a good idea. OK, are you related to the rental agent at Hatteras Realty? What part of autism don't you get?! Did you read in his chart about the recent need for full anesthesia? Did you notice he's a teenager? You honestly think my telling him its not a good idea is going to have any impact? What other light can you shed on my task of parenting?

In God's infinite grace, there was a boy about the same age in the waiting room admiring saltwater fish with me. He had chipped 4 of his teeth by jumping into a pool. (This is a normal kid, no label that I could discern.) His mother and I commiserated over the sick feeling of seeing chips on our babies' precious grown up teeth that are supposed to last them their whole life. Ugggh! Her son smiled to reveal his and I honestly couldn't notice. The dentist and hygienist concluded, "we'll keep an eye on them and maybe later (for another office visit fee) add some composite." The problem was only cosmetic. The solution was too and would likely "chip again anytime he bites something hard." Like a cell phone antenna? I wondered silently.

Thanks for listening to the latent anger. I weary of being polite. With the optimism of inexperience, the young hygienist's final move was to schedule another sealant and attempt it in the office (as opposed to in hospital). Now that's progress!  And I could grow to love her!

But he gives us more grace. That is why Scripture says: "God opposes the proud but gives grace to the humble."
James 4:5-7


From the fullness of his grace we have all received one blessing after another.
John 1:15-17


Have mercy on us, O LORD, have mercy on us, for we have endured much contempt.
Psalm 123:2-4

photo credits: www.geekroar.com, www.theraproducts.com

Dads Rule!

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