Josiah’s Fire

Hello. Well, there’s still a lot of good stuff on this blog, but it’s dusty and outdated. Since I last posted here, much has happened with Josiah. He is communicating through typing now on his iPad. God is doing amazing things through this little boy. If you want to catch up with us, like us on Facebook at Josiah’s Fire.

You can also hear the story from this radio interview. God bless! God is a good gift giver!



Is Your Receiver Broken?

I wrote this for my church’s Marriage & Family blog, but thought I’d share it here too. Be encouraged to receive encouragement, autism mamas!

Women can have a hard time receiving compliments. Tell them how gifted they are, and their eyes will dart down, while they deflect the praise. Tell another women how beautiful she looks and she replies that she really needs a haircut right now. And if you compliment the clothes, it’s like a lady is absolutely obligated to tell you that she got them on sale.

Why are our “receivers” so broken?

Could our inner dialogue actually be keeping us from receiving from God too? Think about it. If someone tells you something great about you, and your gut reaction is to say or think, “No I’m not,” perhaps you’re not able to see yourself how God sees you either.

I was talking with my 16-year-old niece recently and realized this generation is not exempt. She is a breathtaking artist, poet and dancer. Her natural giftedness mixed with perseverance to hone her skills could launch her into an amazing destiny. She doesn’t know it. She’s insecure and compares herself to others. She goes into perfection mode and is always trying to prove herself. As I wrapped my arms around her and told her all the good things I saw in her, she said, “Really? But…” The list flowed out of her like liquid about all that she wasn’t.

Does any of that sound familiar to you—mom, wife, daughter, worker? I remembered a little tip I learned back in the days when I used to do drama sketches at church and shared it with my niece: “When someone gives you a compliment, simply say ‘Thank you’—no more, no less. And in your mind say ‘I agree,’ and thank the Lord for growing or encouraging you.”
I continued, “If someone offers you feedback that’s maybe hard to hear, be teachable enough to ask ‘Do I let that go, or is there a nugget of truth I need to take from that?’”

That posture frees something up in you. A couple of years ago, I came to a startling realization that I was in heavy performance and striving mode with God and others. While I worshipping at a church conference, one simple shift broke something inside of me. We sang this really beautiful song to God (I don’t even remember what it was) about how lovely he is, beautiful, worthy, holy—those words passionately rolled off my lips… and then the worship leader said, “Now sing that again, but now imagine God is singing those words to YOU.”

The tears just flowed from my eyes. “Tahni, you are beautiful, worthy, holy, and I love you.”

Whoa, why did I need to hear that so much? Why do you need to hear it so much? I’m learning we have to know what God thinks about us, or we’re toast. False humility has gripped Christians for centuries. The idea that we have to perform, or perfect, or try to impress God into being proud of us is just keeping us down.

Learning to step in to all that God says we already are is where it’s at. When you get a picture of yourself in Christ, those compliments will be received for the encouragement that they are.

“I desire for you to become intimately acquainted with the love of Christ on the deepest possible level, far beyond the reach of a mere academic, intellectual grasp. Within the scope of this equation God finds the ultimate expression of Himself in you (so that you may be filled with all the fullness of God). We celebrate Him who super charges us powerfully from within. Our biggest request or most amazing dream cannot match the extravagant proportion of His thoughts towards us.” Eph. 3:20 (The Mirror Translation)

RPM: Accelerate Education for Non-Verbal Kids

“Our hope is that we can get these students to sit still long enough to do something productive like perhaps crush cans or shred paper.” Those words felt like a sledgehammer to my face, and I regretted that I had stumbled onto the wrong session.

This past January I was attending an autism seminar and was drawn to the breakout called “Activities for Non-verbal Students,” and because Josiah was not yet speaking, I thought I could benefit from learning some tips of interaction. I got just a few minutes into the session and realized the marketing blurb didn’t explain the targeted audience for this session very well. It was really more about high-school-aged kids with autism that were still non-verbal, and was facilitated by teachers of a local school district who worked with them.

I got that hot, flushed feeling that goes all the way from the top of your head down your back as they showed videos of these overgrown children screeching, rocking, and doing “productive” things like taking turns lifting weighted tupperware boxes over their heads. The well-meaning educators talked at length at how their day consisted of regulating behaviors. I got teleported 10 years into the future and I couldn’t bear even the thought that my son would ever have to be there–being managed, not educated.

I Think, Therefore I Am

The world we live in is a verbal world, and yet 40% of kids with autism will never speak. The ones that do speak seem to make their way in school alright with some help from aids, but the non-verbal ones are seemingly unreachable and unable to learn alongside everyone else beyond rudimentary skills. I pray and believe that my son will speak one day. But a couple of months ago when the three-year psychiatric evaluation came back around for insurance purposes, I watched in agony as the psychologist could not even test Josiah. Josiah wouldn’t give him the time of day or any indication that he was even comprehending a thing the guy was asking. Josiah sat in the trash can, inattentive. This society does not know how the autistic brain works. They craft assumptions. They assume a non-verbal child with autism is less intelligent than one that speaks, and that not only the expressive language is lacking but that the receptive language is scrambled.

I may be making sweeping generalizations by saying those things, but I’m going to make another sweeping generalization: these pre-verbal autstic kids don’t have a comprehension problem. They have an output issue. Most of the therapies out there don’t penetrate into the treasure trove of intellect that these people have but have not been able to express properly. The Rapid Prompting Method does. I can say that now with confidence because Josiah and I just spent four days in Green Bay, Wisc. learning how to do it, and immediately Josiah was able to express what he already knew and what he was able to be taught. It’s simple to do, yet profound in its effectiveness. I was flooded with hope.

I was first introduced to the Rapid Prompting Method by watching the HBO documentary “A Mother’s Courage.” In the documentary we meet a determined firecracker of a mother who came up with the method for her own child and is now teaching it to others–leave it to a mother to pioneer a way to bust through convention for her kid! Her name is Soma, and her son’s name is Tito, and you can learn all about their story here and even get the book on the method. It was inspiring to watch this method in action, but you always wonder if it would really work for your child, and how would you really access it anyway? This center and Soma were in Texas, and they only take kids older than 7.

Some Things I Now Know for Sure

My Googling fingers went to work and BINGO! Erika Anderson who has apprenticed under Soma for three years moved back to Green Bay to open a center there. Only 4 hours from the Twin Cities, I thought I could do that! She offered a 4-day “camp” consisting of two 2-hour RPM sessions a day, and she was taking kids as young as 5. RPM also is helpful for those who are verbal and need a little more help expressing themselves. I found some people from online searches that had done RPM and got glowing recommendations, so I was off to Packerland.

Josiah learning through the Rapid Prompt Method

The first moment we got there, Erika, in a no-nonsense but incredibly warm way, ushered Josiah to a stark room with these simple tools: a table, two chairs, white paper, tape, a timer, #2 yellow pencils and stencil boards of numbers and letters. And they went to work as I observed. While the mechanics of the Rapid Prompting Method don’t need to be explained here, I will tell you the profound perspective shift that happened in ME as I saw my son learn about things like the Ice Age, Eskimos, vowels, spelling, addition, telling time and Christopher Columbus using RPM:

1. Josiah is intelligent and he is listening to everything we’re saying even when it looks like he’s dialed out. I learned that his primary way of learning is auditory, while I thought it was visual. Although he is in tune with his iPad and the pictures there, he is selectively visual. On the other hand, he is hearing and processing that which is being spoken. The teacher didn’t dumb anything down; she just spoke to him like he was a typical 5-year-old, and he responded correctly to comprehension about 85-90% of the time when choosing from a field of two answers.

2. He can learn and be educated at grade level. Josiah would normally be going into kindergarten this year, but he is nowhere near ready according to what’s been achieved in this 3 years at his autism therapy center using Applied Behavior Analysis (ABA)/Applied Verbal Behavior (AVB) therapy. I would imagine we’re more like two years away from being able to enter school. But Erika showed me how to teach Josiah from the book, What Your Kindergartner Needs to Know. Always assume normal, age typical intelligence and teach from that perspective, she encouraged. I was so excited about what Josiah already knew, and what he was able to learn. Immediately, it boosted the quality of the interactions that I have with Josiah.

3. I know enough now to be frustrated with a holy discontent. This method works for my son, in fact no matter what age the non-verbal autistic person is, Erika and Soma have yet to find a case where RPM hasn’t worked for them. It starts with making choices from two fields, moving to three, spelling by pointing at stencil boards until motor skills improve, and eventually to being able to express independent thoughts through writing or typing. To progress to that point unlocks the world of a non-verbal child by giving him a voice. But what to do with this? I can practice for 25-45 minute sessions with Josiah at home every day, but what about all the time he spends at his therapy center? He is learning wonderful things there, but he’s by no means being educated at grade level.

How do you get therapists on board with a technique that cannot be scored in the same way as ABA is on charts and graphs? It’s the same issue I’ve had with them really being able to implement the power of the iPad for learning. What about when Josiah goes to school? This is so innovative that getting conventional therapists, educators, and insurance companies to bite seems close to impossible. Homeschooling seems more feasible, but how to do that with our two-income household? Well, in the meantime, I’m wanting to bring Erika to the Twin Cities for a workshop. She’ll travel and work with 2-12 individuals and families for a reasonable price while parents, therapists and even the media can observe the technique and learn themselves. Please contact me if you would be interested.

4. Kids with special needs must know that you believe in them. Making sure that the running dialogue with your child is very positive and affirming while stretching them to do what they haven’t done before is key. Kids with autism can feel less valuable, have lower self-esteem, and become frustrated with a body that won’t do all that they wish it would. So, my encouragement for Josiah to excel and try hard while celebrating the tremendous effort he puts forward is going to intentionally increase. He hears it and appreciates it.

I am so proud of my son. It was certainly a journey where everything was new for him–staying in a hotel, swimming in those big pools, eating in a lot of restaurants, and learning in a whole different way. Aside from some sleeplessness and high-pitched vocalizations that hurt my pride more than anything, Josiah was a happy camper. The week we spent there is going to change so many things, and I am grateful.

Be alert, be present. I’m about to do something brand-new.
It’s bursting out! Don’t you see it?
There it is! I’m making a road through the desert,
rivers in the badlands. Isaiah 43:19

A TYPE of Speaking

Once I knew only darkness and stillness… my life was without past or future… but a little word from the fingers of another fell into my hand that clutched at emptiness, and my heart leaped to the rapture of living.–Helen Keller

A couple of months ago, I had a revelation.

Josiah with his trusty iPad!

While wrestling with the fact that my beautiful little boy is still “pre-verbal” at 5 1/2, I recognized potential existed beyond the breakthrough of words. He IS in there, whether words ever exit through his lips or not. And he’s more aware of everything around him than I know.

I’ve wanted to believe he was, but in his silence or intelligible noises, at times I’ve forgotten. And doubted. And been less expressive back to him myself because I sometimes lose motivation to “chat” when it’s one way.

Somewhere while looking for clues of what Josiah comprehends within the quagmire of “expressive” and “receptive” language charts and graphs, or labeling stuff by tapping on a picture square, a chunk of optimism fell off my heart. I never thought with all the early intervention and everything we’ve thrown into this guy that we would be HERE. Less spoken words than ever, and he’s almost 6-years-old. Without words, his true intelligence is missed and misunderstood by those of us out here that don’t know how to mine for it. But oh, he has a light in his eyes and is full of joy!

When so much time, money and effort all of these years has gone into unearthing the holy grail of “progress” in my mind–“Can he TALK?”–I’ve been prompted to change my perspective of what I truly need for him. “Can he learn to communicate?” Not just “I want swing” or “I want donut” by pointing to talking pictures on his iPad. But tell us what he’s THINKING. What he loves. What he’s curious about. Or just simply in this crazy autism world of asking him the “what is it”s, I want him to be able to ask me “Why?” about something. Anything.

I watched the HBO documentary A Mother’s Courage a couple of months ago, and it ignited a new fire in me to help unlock my son’s world. (You can Netflix it if you haven’t seen it.) It featured something call the “Rapid Prompt Method,” and kids who everyone thought couldn’t learn or had very immature minds because they couldn’t talk were showing everyone what they were made of . Even the most “severe” were learning to choose and discuss topics and to write. And some were eventually learning at grade level and communicating their thoughts brilliantly. They were funny and they had a lot of things to say like the rest of us. You wouldn’t have known it from the outside that they were even listening.

The documentary “A Mother’s Courage” shows several scenes about the Rapid Prompt Method…

This news story features a kid who was “sorting silverware and doing first-grade work” the year before and just won the 8th grade science fair doing college-level chemistry after learning how to use a letter board to communicate!

Then, this documentary called “Wretches and Jabberers” came out and I hope to see it. In the trailer, you see that the adult autistic man answers the question, “So you’re saying all our assumptions about you are wrong?” He replies, “More like you than not.”

So, I’m trying yet another new thing this summer. I’m packing up Josiah for 4 days and driving 5 hours to Green Bay, WI where I found out that a lady that apprenticed under the developer of the Rapid Prompt Method has opened a therapy center. I’m willing to risk $460 to check it out. I’ve contacted three other people that have tried this with their children, and they all have said it has been well worth it.

I want to see if my boy who’s a whiz on the iPad could learn to type one day and rip down this word barrier. I want my son to LEARN, not just label. I want my son to COMMUNICATE, not just behave. Josiah attends a center-based therapy center 40 hours a week of the ABA/AVB, Physical Therapy, Speech Therapy variety. What if he learned how to spell, and he could be educated? What if he was able to gain confidence and interest in learning how to do something that made him feel valuable and like he had an outlet? Perhaps we need a little more creativity.

I’m thankful that Josiah has come so far. He’s really a delightful little boy. It’s time for him to learn how to communicate and to show off what he already knows. I continue to pray for God’s healing to release that tongue of his. In the meantime, I’m compelled to give this Rapid Prompt Method a go. I’ll let you know!

He Thought, She Thought

I wrote this post for my church’s Marriage & Family blog, and thought I’d share it here too. Though I didn’t address it for an audience of married couples facing special needs challenges, I want to acknowledge here that I understand firsthand the strains that something like autism can put on even the best marriage. Married 13 years this August, my husband and I were pretty great communicators for the first 9 years and were always in stride with one other. When autism entered in, he and I have coped somewhat differently, and our insecurities have certainly been tapped into. Stress speaks. Even in the silences.

Our greatest challenge in the past year has been “drift.” When we realized that we both needed to carve individual time to get recharged, one of us always had to be home with Josiah. For the past 4 years we could no longer attend church together, hang out with the same friends, or take the same vacations. That has an affect on unity. It’s hard to “turn toward each other” at times when you’re simply not together as much, and when you are, you realize you’ve learned to guard your heart differently–find ways to face your realities differently. It takes work, but for the man who is a stellar father to Josiah, and who is the love of my life, I now realize why it’s so important to put your own oxygen mask on before you help your child. I want to get better at that. As they say, this is a marathon. Now to that post, “He Thought, She Thought.”

“I feel like you’re constantly judging me on a point system,” he said, paired with an eye roll.

And that started the first little “spat” of our engagement, right on the lovely sidewalk in front of roaming white geese in a quaint colonial spot in Pennsylvania.

Our intertwined fingers separated and I felt totally misunderstood.

“Sheesh! Why do you feel like I’m judging you? Am I that horrible of a person? You must not know me at all,” I retorted.

If I would have known 14 years ago that the root of almost every marital discord we would have would be summed up in that little exchange, I could’ve made much greater strides as an ideal Proverbs 31 woman. Alas, I just made the connection. Today. (And, for the record, the Proverbs 31 woman had maids, so I’d already given up that far-fetched goal.)

Shaunti Feldhahn sums it up best in her book, For Women Only: What You Need to Know About the Inner Lives of Men: “A guy’s inner vulnerability about his performance is made more intense by his belief that at all times he is being watched and judged…and perhaps found wanting. It includes the knowledge that since they don’t always know what they are doing, they are just one mess-up away from being found out.”

Conversely, in Feldhahn’s book, For Men Only, she and her husband nailed why my womanly brain ended up in a stand-off with my man’s ego: “If she’s feeling something, it’s counterproductive to try to tell her she shouldn’t be feeling that way. As men, we’re prone to jump to the conclusion that our wives are in husband attack mode. But remember a guy’s performance isn’t usually what’s on her mind. Our wives need to process their stuff by talking about it and having us available to listen…and not take it so personally.”

Women need to process feelings and discuss issues. Men feel like they have to perform and solve. Women feel unheard. Men sense that they don’t measure up. And there you have a little 9-year-old girl standing in front of a 10-year-old boy, both in adult bodies, clinging to their old innate insecurities.

She goes to bed feeling emotionally unmet. He turns off the light feeling like he doesn’t have her respect. While a reluctant “I’m sorry” or two may have been lobbed up, each adds the episode to their record of wrongs. And each secretly takes a mental note of the best ammo to use in case there’s a need to go into “attack mode” later to defend one’s self.

At the end of the day, whether it’s testosterone or estrogen at work, I think both men and women really want the same thing. They both want the other to think the best of them, to know their intentions, to call out the gold, to let the unprompted encouragements and approving glances outweigh thoughtless jabs and critical body language.

So, now that I know what I know, I’m going to try something this week. I’m going to consciously refuse to prey on the known insecurities of my husband, who I truly care about to my core. I’m going to recognize my choice—“speaking rashly, like the piercing of a sword” or realizing “the tongue of the wise brings healing” (Proverbs 12:18).

Living with Unresolve

“Life would be so much better if I could just remove this one thing.” Do you find yourself saying that? It’s that present problem that you never planned for, but it came. And it’s usually something that you don’t have much control over no matter how hard you try. Like a chronic health issue, an ailing parent, a wayward child, a disengaged spouse, long-term unemployment.

If you truly have a “one thing,” you don’t have to um and ah to conjure it up; it’s an instant response. Because it’s the thing you wake up thinking about and go to bed praying about. No matter how much you pray or change yourself, that “one thing” can still persist—maybe even for years, maybe for life. With that “one thing” persisting, how can you even experience that “life to the full” that Jesus came to give? Do you wonder sometimes if that simply wasn’t meant to be for you?

I’ve faced some tough stuff in my life and even some close calls, but most big things were resolved. Even when my father died suddenly at 55, that was hard, but it was final; resolved. When my son Josiah was diagnosed with autism at age 2—a neurological disorder that doctors say has “no known cause, no known cure, and is lifelong”—I encountered my first big wall in life that I couldn’t get over, naturally heal from, or work my way out of. It’s open-ended, unresolved. Uncomfortable.

I had no grid even in my spiritual life for a problem that didn’t have a foreseeable expiration date. And worse, it affected my only child before my eyes…and not one area of our family lives has been left untouched by it. Still, God says, “I have good plans for you and for your child”… “I work all things together for good”… “I do good work in you.”

Faith progress is believing that He just is Good News that eclipses the power of that which is unresolved right now. He is the Solution to every unanswered question in our lives.

So, how can we live with resolve while that “one thing” is still unresolved (according to Colossians 1)?:

1. Tap into God’s supernatural strength. God offers us a strength accessible by faith that is not our own. It is more than mere day-to-day survival; it is filled with enduring hope and expectation despite the present circumstances. It empowers us to persevere in prayer and speaks to us, “Never give up. Keep walking. Keep trusting.”

2. Cultivate joy and thankfulness. We have to practice these responses by reveling in what we have been given through Christ and engaging his promises instead of succumbing to despair and complaining. The best practice is giving away to others the very thing that you need yourself—like encouragement, prayer, or time.

3. Relentlessly pursue your destiny. God has bright and beautiful things planned for us, and equips us to do each one. The devil would love nothing more than to trap us in the “Land of Why” so that we become embittered to pursuing our God-given purpose. Instead, I dare you to move, to risk, to dream with God again! He is always forward moving—God of the Breakthrough, Restorer.

We pray that you’ll have the strength to stick it out over the long haul—not the grim strength of gritting your teeth but the glory-strength God gives. It is strength that endures the unendurable and spills over into joy, thanking the Father who makes us strong enough to take part in everything bright and beautiful that he has for us. Col. 1:11-12 (The Message)

Before He Was Savior, He Was Carpenter

My father was a very hard worker. He used to be a road construction foreman, and he was one of those guys that knew just enough about how everything worked to be dangerous. Having grown up on a farm, he could fix just about everything that went wrong in the house or under the hood of car—well, “fix” is a term to use loosely. He could at least “jimmy-rig” stuff together with wires and duct tape until the electricity came back on or the plumbing worked again—for a while.

When I was in grade school, my parents took up a little hobby that turned into a side business. My father ended up being really good at carpentry at the height of country décor in the 80s. I remember watching him in his shop, his pencil behind his ear. His well-worn hands—a little dirt under his fingernails—precisely put shelves and benches, hutches and cupboards together. And at times he would restore antique furniture that people brought to him. After all of the measuring, sawing, pounding, and sanding, something useful and sturdy and full of character would emerge.

With the little bit of exposure I’ve had in my life to carpentry, this week I was reflecting on the occupation that Jesus had before He was teacher, Master, or Savior. For 15 years he apprenticed and worked his step father’s trade as carpenter. I love how God could have chosen for Jesus to do any number of vocations, but the work that prepared the Messiah for ministry was carpentry.

A carpenter builds and repairs. Those two main things comprise the whole of carpentry: building what is needed and restoring what is broken. He went from doing those things thoughtfully with wood to doing those things for people. Building what is needed in us; restoring what is broken.

I also find it more than coincidence that the carpenter, whose hands drove many nails themselves, allowed nails to be driven into his. How the man who worked carefully with wood, hung on a rugged, thrown-together wooden cross. How the one that put broken people back together again and healed them was broken himself by some of those same people. But he in great love endured because he knew he was the architect of life and destiny for all of mankind. He was the only One to repair relationship between us and God, and us and each other. He would fulfill his order perfectly.

Everybody who is pursued by Jesus has different levels of brokenness, yet he meets all of us where we are and goes to work fixing, if we’ll let him. His practiced eye for details recognizes overlooked potential. When we doubt that we could possibly offer anything to the world, he scans all the pieces of our experiences, desires and strengths and he says, “I can work all that together for good.”

In fact, Ephesians 2:10 says, “We are God’s own handiwork, created in Christ Jesus for good works which He has planned for us to do.” One simple act of surrender to put all of our broken pieces before him, and  he goes to work making all things new. That’s what Easter means to me this year.