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 Well, there’s still a lot of good stuff on this blog, but it’s dusty and outdated.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!

 

 

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!

Christmas cards 2010

Ordered the Christmas cards today from Shutterfly!

Come and Get Your Love

My last absence was too long, but I’ve been processing, people. Internal processing can be good. I don’t have to blab all of my feelings all over the place, right? Partially, I don’t even know where to start. I don’t have a hook, really, or even a good story to spin a profound thought from, so I guess I’ll just break down some things I’ve been learning on what I call my “complex journey to simplicity.” Stop number one: LOVE.

Now, I don’t have any issues in my past that would cause any abnormal barriers to understanding love. I grew up with parents that loved me; I’ve never been mistreated by a man; I’d like to think I’m a loving, affectionate person. So, it kind of surprised me about a month ago that I had something profoundly new to experience about God’s love for me. Not just your John 3:16 “Come to Jesus” love, which is totally amazing, but the love that he wants to lavish on me every day. The love that helps me connect with who he is so  I can even start to understand who I am.

I’m getting the picture: God loves me–like crazy love. Okay, so this sounds really cliche and simple. I get that. I wouldn’t say I was having any issue feeling loved by God before this “clicked” for me. However, here was my “aha”: I had been trying to pour out love and affection to God myself through prayer, worship, study, etc., but I was working so hard doing those things, that I forgot to allow myself to be on the receiving end of  love. His love. That makes for a pretty empty relationship of the one-way variety. Sure, I’d throw out your “thank you for loving me” statements in prayer and indulge in reflecting on God’s “great love” once in a while. But, that was starting to feel pretty impersonal. Without even knowing it, I was getting heavy into “Martha” mode when he was like, “Be a Mary and just sit down and soak it in. You’re making sandwiches for me that I didn’t order, and you’re getting all worked up about it, to boot. Sit down. Be quiet. Enjoy me.”

He Sings Over Me

While I was at this amazing conference at Bethel Church last month, one simple shift broke something inside of me. As we were worshipping in the conference, we sang this really beautiful song to God (I don’t even remember what it was) about how lovely he is, beautiful, worthy, holy… 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.” 

Woah, why did I need to hear that so much? I’m learning we have to know what God thinks about us, or we’re toast. This false humility that has gripped Christians for centuries has to stop. The idea that we have to perform, or perfect, or somehow impress God into loving us enough to straighten out our messes is just keeping us down. Learning to receive his love every day is step one. I had jumped ahead to step five. Back up. Do not pass go. Do not collect $200. Go straight to the lap of your Papa and let him hold you for a while.

There were many more confirmations that came that were big enough to make me realize I better pay attention to this love thing. One lady at the conference came up to me out of the blue and gave me a red glass pocket heart. She said, “God wants you to know that he loves you so much. He’s proud of you. Just let him love you. You don’t have to earn it. Approach him like a little girl. Crawl into his lap and let him love you.”

Can You Imagine?

I’m experiencing that sometimes you just have to engage your imagination and get an image of what it looks like to receive God’s love. That might be different for each person. Dance with him. Sit with him. Walk with him, whatever. Then it connects with your spirit and fills you. Romans 8:15-17 (MSG) says it well, “This resurrection life you received from God is not a timid, grave-tending life. It’s adventurously expectant, greeting God with a childlike, ‘What’s next, Papa?’ God’s Spirit touches our spirits and confirms who we really are. We know who he is, and we know who we are: Father and children. And we know we are going to get what’s coming to us–an unbelievable inheritance.”

I’m learning that his love is there. It’s always there, but I have to come and get it. The biggest hindrance to experiencing the life-giving love of Jesus is fear. I thought I was really grabbing on to faith, but without consciously being on the receiving end of his love, fear was choking out my faith completely.

Raising a child that has autism can be so scary. It feels like everything is out of control. You don’t know what happened. You don’t know what the future holds. You don’t know why he’s acting like he is. You’re afraid you’re not doing everything you can and should, and even when you are, it seems like it’s never enough. Of the 15 things that need to be tackled, you don’t know where to start today. You don’t know what the bills and the stress are going to do to you next. You just want the nightmare to be over. If you let it, it will consume you, kill your spirit and dry you completely up.

But love is the thing that drives out fear. “There is no room in love for fear. Well-formed love banishes fear. Since fear is crippling, a fearful life… is one not yet fully formed in love. We, though, are going to love–love and BE LOVED. First we were loved, now we love. He loved first.” 1 John 4:18-19 (MSG).

So, there you have it. Love–come and get your love now. (Surprisingly, this song can totally work as God singing it to you. He’s the “main vine,” right? Maybe it’s about drugs originally, I don’t know, but I think it really gets my point across.) Give a listen:

Vote for Us in the Transitions Photo Contest

Hello dear readers. I don’t know where all of you come from, but I am so humbled that you’re out there and that you visit my blog to read my ramblings–almost 11,000 visits so far! So, I’m going to be shameless and ask for your help.

Josiah has worn glasses since he was two, and they have Transitions lenses. We entered a photo contest sponsored by Transitions lenses to win $10,000, which we would use to help pay for Josiah’s biomedical treatments. They are also giving away $10,000 to the grand prize winner’s chosen charity. Ours would be TACA: Talk About Curing Autism, because they are a parent-led organization that gives grants to families who don’t have the money for treatments and special diets. I think that’s great!

So, here’s what I’m asking you to do:

Go to http://www.transitions.com/liveyourvision/, click on “view entries.” You’ll need to register to vote (it’s lame, but they won’t send you anything if you don’t check the box.) Once you’re in, go to the search box and type in “autism.” Look for the picture of Josiah in the car. We have three of them on there, but thought splitting the vote might actually be a bad thing, so please vote for the car.

Sorry their voting process seems a little clunky, but I appreciate you doing it for us! Also, you could spread the word to your friends on Facebook, etc just by giving them this blog link. Hey, be creative if you like. The contest ends October 15. I’ll let you know if we win! Thanks again, friends.

    We live our vision by sharing our documentary and blogging hope and help to other families living with autism. We think our son's future's so bright he has to wear... Transitions lenses.

We live our vision by sharing our documentary and blogging hope and help to other families living with autism. We think our son's future's so bright he has to wear... Transitions lenses.

Making Sense of Numbers

“All things began in Order, so shall they end, and so shall they begin again, according to the Ordainer of Order, and the mystical mathematicks of the City of Heaven.”
–Sir Thomas Brown

Today I’ve been reflecting a lot about numbers and dates. Such weighty significance in numbers, really. They are orderly and dependable as a rule, yet they take quantifiable account of the chaos that can unfold around us.

The seconds tick by in the day far too fast yet progress is gained much too slowly. The numbers drop off in the checking account before my eyes. Another page flies off the calendar each time I turn around. And, when it comes to autism, the numbers appear, flip and turn with each click, like I’m in the movie The Matrix–statistics that are unsettling and alive.

Today’s standout numbers for me are:

8.25.09: Today is the 2-year anniversary (I wrote about this last year) of the day that we were personally introduced to the word “autism.” It came so very unexpectedly, and it’s the day that the winds of change blew so hard it almost overtook me. We mobilized quickly to get answers. Things have never been the same since that date.

9.03.07: The lowest day of my life. It was Labor Day weekend and I remember being so sick to my stomach that I couldn’t barely stand up straight. I cried into a bathtowel hard–a tissue or even paper towel wouldn’t do. I couldn’t eat. I just watched and scrutinized every move of my baby in front of me as we began to lose connection with him. He was becoming so far away. My husband and I had just spent many hours in that previous week Googling autism, and it sounded positively damning. I remember us just crying together, “If this is what it is, what are we going to do?” Somehow, the human spirit kicks in and tangles with the supernatural enough to keep moving forward, hoping for a better day. We still have our heads up.

1 in 100; 1 in 66; 1 in 81; 1 in 10,000: These numbers must hold some sort of clue. Some direction to study. The past numbers of 1 in 150 kids being affected by autism as reported by the CDC is about to change, according to this report that says it is now weighing in at 1 in 100, and 1 in 66 among military families. The CDC may be ready to call autism an “epidemic.” You think? In Minnesota where we live, there is a harrowing study that came out saying that our state has the highest rate of autism in the country at 1 in 81 births. (It’s actually something like 1 in 24 for kids of Somali refugees living in MN.) And then there’s the clincher: the rate of Autism among the Amish is 1 in 10,000, which was our national rate of autism in 1987. Surely, if there was an honest study, we could find some links here.  Really, between genetics, environment and vaccines, what is going on? Which leads me to this important number…

9.09.09: Mark your calendar for this date. The National Autism Association is going to boldly ask the entire nation HOW MUCH LONGER? through a series of ads and press releases. The main message:

How much longer before our children have insurance coverage? How much longer before you remove toxins from vaccines? How much longer before you do a vaccinated versus vaccinated study? How much longer before you create federal laws to regulate restraint and seclusion in school? How much longer before autism families get federal aid? How much longer will our kids have zero resources? How much longer before you declare autism an epidemic? How much longer before you declare autism a national health crisis? How much longer before you test the safety of simultaneous use of multiple vaccines? How much longer until you address where children with autism will live after their parents are gone? How much longer before you admit the rise in autism is real? How much longer will you continue to call tens of thousands of the same story a coincidence? How much longer will you allow more vaccines to go on the schedule? How much longer before you fund real research? How much longer before our children get real answers? We’re waiting…

10.04.09: My baby boy turns 4. I know he has come a long way, but is it going to be enough? He will have less than 2 years before he hopefully is ready to enter Kindergarten. He will have had over 4,000 hours of therapy by age four, and 8,000 by Kindergarten. About $8,000/yr. of out of pocket costs go for special food and biomedical treatment. I want him to succeed. To think. To speak. To have friends. To be happy.

At the end of the day, it all adds up to this: my precious little boy is so worth it. Your child is worth it. Unearthing answers for those who come behind us is worth it. Each number or cold statistic reflects a life–precious and dear to parents and family–and to God. A thousand kisses. A thousand smiles. A thousand tears. A thousand memories. A thousand dreams. A thousand prayers. The odds are, it will all pay off someday!

Father, What are We Doing?

I was reading in Genesis 22 the other day. It’s the story about how God had asked Abraham to sacrifice his son Isaac on the altar to him. (Very uncharacteristic of God, by the way–he’s not a “human sacrifice” kind of god.) It always was a little unsettling to me that God would even ask such a thing, and now that I have a son, I cringe at the thought. Whenever I’ve heard a pastor talk about this passage, they always praise Abraham’s OBEDIENCE to God through this test God put before him. But, as I looked further, I found out it was more than dutiful obedience at play here. I’ll explain…

Abraham showed that he would do what God told him to, no matter what. But, think about this. All along, God promised Abraham that he would be a father of many nations, and Isaac would be the seed to fulfill that promise. The guy waited until he was over 100 for this miraculous birth to take place because he and his wife were too ancient to have kids, but nothing’s impossible for God, right? Now, he has the son, he has the promise God gave to him for his future–and now God says, “Give it all up to me.” His son, his dream, his promise–everything–rides on this one event.

Picture this scene. Abraham takes young Isaac on a little hike to do the ritual sacrifice like they’ve done before. Isaac asks, “Where’s the lamb, Daddy?” Abraham says, “Oh, God will provide a lamb. Let’s sing some songs. The legs on the donkey go clop clop clop all through the desert...” Then they make it up to the top. Abraham grabs Isaac and ties him to the altar. Isaac’s probably like, “Okay, this isn’t a fun game anymore. In fact, Dad, you’re kinda starting to creep me out. Especially with the knife and all.” Abraham has got to be sweating a little at this point as the knife is about to go in, and finally, an angel says, “Woah. Don’t do it. It’s all good. Here’s your lamb to sacrifice.” They all have a good nervous chuckle, say “that was a close one, huh?” Abraham gives Isaac some fruit snacks and they head home. Good story to tell the grandkids.

How Much Do We Trust God’s Character?

But here’s the thing. What Abraham did was not only out of obedience. It was out of faith, knowing to his toes that God would not let this be the end of the story. He held tight to the promise that was given to him. He knew the character of God and that there would be a better outcome, and it would not include losing his dear son in death. His obedience was a bi-product of his faith in God; his faith was not forged as a result of this test. It already was at play before the test, and his trust in God was only deepened through it. It was his faith (not just obedience) that got him an “A” on this one. Here’s how I know:

1. Abraham told the men travelling with them to hang back while he and Isaac went further on. He said, “We will worship there, and then WE WILL COME RIGHT BACK.” (Not said with a wink, wink, gulp, I hope so.)

2. When Isaac asked where the lamb was, Abraham said, “God WILL PROVIDE a lamb.”

3. Finally, Abraham is ready to strike the death blow, and this is the part I love that’s in Hebrews 11:19, “Abraham assumed that if Isaac died, GOD WAS ABLE TO BRING HIM BACK TO LIFE AGAIN. And in a sense, Abraham did receive his son back from the dead.”

Friends, I couldn’t sleep and was up praying at 1 am one night this week, and I was reminded of this story. I told God that I want to stop striving, begging, and wondering if my Josiah will be made well. I will stand for his healing, confident in the outcome no matter how bad things look. I place my son and his future, along with our hopes and dreams directly into his hands because this is what I know about who my Father God is:

1. Because he sacrificed and brought his own Son back to life, that blood that was shed was to rescue us from our sins and our sicknesses Isaiah 53. This promise is for whoever believes by faith Mark 16:16-18.

2. God cares about us, and even though we might have to go through some things, if we keep trusting in him, resisting the Devil, and staying strong in faith despite the current circumstances, we will be restored, supported and strengthened 1 Peter 5:6-10.

3. Because of his promise to us, we can trade in our worry and exhaustion for the assurance of his good future for us and our kids–that they will be made well, that they will hear, speak and sing Isaiah 35:3-6.

4. He makes some pretty bold claims that beg you to reconcile whether he’s a truth-teller or a liar, and you got to be all in or all out. And, he tells us that we can know he’s listening when we pray and if we ask him anything according to his will (healing, by the way is God’s will–Jesus and the disciples healed everyone who came to them asking for it), he will give it to us 1 John 5:1-15.

So, here we are. We’re in a fight that takes graduate-level obedience, faith and trust in God. It also takes studying the Bible to get a clue of who God is beyond the pale of our religion, tradition, or the little human boxes we try to put him in. That’s the Abraham-kind of faith that will help us going into any test or trial, knowing that we will come out the other side stronger and confident in God’s power more than our own comprehension of HOW it can all be accomplished.