Trapped, But Pursued

This past month, I keep encountering a certain word. After I reflected on it twice, it continues to show up in different contexts. Now it really has my attention. I’ve been asking myself, “What am I supposed to learn from this?” Well, let’s see if by the end of this post I have that figured out.

The word is “trapped.” Trapped. I start to feel a little claustrophobic just staring at the word.

The first time it grabbed my attention was when I was looking at a blog post written by a couple from church that is doing missions work in Haiti. Mind you, I read this a couple weeks before the earthquake hit. They stopped to visit an orphanage–a mission for handicapped children–at Christmastime. Many children with severe mental and physical handicaps are simply abandoned, “left with little hope for someone ever loving or caring for them.” I looked at the pictures, and my heart broke. I thought of my own son. If he had been born in a different geographical location and under different terms, what would become of a little boy like him? 

This statement jumped out at me: “Several were in wheelchairs TRAPPED in a body and mind that didn’t work like ours. Others had bodies that served them, but minds that didn’t.” I cried. Who will love them? Who will go after them? My son has a trapped mind in a body that works and looks perfectly normal.

Shortly after,  I saw this YouTube video of a lovely, well-spoken 17-year-old with autism who was able to articulate what it was like when she was Josiah’s age. She said, “It was akin to being trapped. I couldn’t communicate or express myself in any way. I had to be taught how… they are desperate. They can’t communicate. They feel trapped… If you open the doors to try to get them to communicate you give them hope to get connected to this world, and ultimately to be much more successful.”

And then, the Haiti earthquake hit. I watched a news report about how there were little to no officials or equipment on the scene to try to recover people from the rubble. The reporter said family members and friends were desperate trying to get to their loved ones themselves. They were grabbing at concrete and trying to use hand picks to get through tons of rubble because they could hear the faint cries and screams underneath. An impossible task, really. Yet, how could they stop? They could still hear life.

I know it’s not the same thing, but it made me think about our kids with autism. Everywhere we turn, there seems to be obstacles to breaking through to them. Something completely blindsided us. We’ve been left with a mess and wondering “why?” The “professionals” are really not at the scene digging like they should or seemingly could with the equipment and resources they must have. But, it is parents and some friends–desperate ones–digging. Lifting off one piece of rock at a time with their bare hands, if they must, to reach their children. Because as long as they are “in there,” the drive is relentless to get them out.

Back to Haiti… Someone is not supposed to be able to live more than 72 hours without water. In 72 hours, rescue begins to turn to a recovery mission. Urgency gives way to a pace devoid of the same hope to pull someone out alive. But a little 5-year-old boy was found alive 8 days after the earthquake. A 16-year-old girl was just rescued alive after 15 days of being trapped. I’m thinking at this point that perhaps we should redefine “impossible.”

Two days ago, my husband and I took Josiah to a new place to obtain some speech therapy on top of the full-time therapy he’s already getting at an autism center. He started out just fine until the new therapist started placing too many demands too quickly and he became so upset and stressed. She thought it might be better for Joe and I to leave the room for a little while and see if she could calm him down. We could view the room from a television. We watched our little son go under a table in the corner and ball up into a fetal position, crying. It’s not that the therapist was mean or anything, it was all just too much for him. He was feeling trapped. He LOOKED very autistic at that moment. My heart began to collapse. “How do I rescue him? It’s been 2 1/2 years, and he’s still trapped. Words and understanding are still illusive. How do we break through?” I felt trapped.

A couple of years ago, I wrote a post about being a “prisoner of hope.” Essentially, being trapped in hope. This is the scripture it was based on: “Return to your fortress, O prisoners of hope; even now I announce that I will restore twice as much to you” (Zech. 9:12). That verse has been very empowering to me. But I realized something very profound in my own life recently. Hope is so good, but it is inferior to faith, and it’s not the same thing. I needed to lock myself into a prison of hope for a while to escape from being trapped by despair. But, now it’s time to experience faith’s fight and freedom. Hope says, “It can happen.” Faith says, “It will happen.” Hope is really the springboard to faith, because it says, “Now faith is being sure of what we hope for and certain of what we do not see” (Heb. 11:1). Faith reaches for the results that hope maintains a yearning for.

Holding on to hope can keep you alive for quite a long time while you’re trapped. But faith is needed to bust you out to a new reality. It just takes a little bit of faith, Jesus said, and you can say, “mountain, ‘Move from here to there’ and it will move. NOthing will be impossible for you” (Matt. 17:20).

Nothing is impossible. So just know that I’m coming for you, Jo Jo! We’re pulling you out. I know you like tight spaces, but I want to see you in the wide open.

A Poem for Us Moms

My neice, Chayle (14), wrote this poem especially for me and Josiah. It dropped in my email yesterday, and I was amazed at how she captured the heart. She lives 1500 miles away and doesn’t see autism, but I was moved by her images. Her poems are always beyond her years and beyond cliche.

“Autism”

Mom, why are you crying?
How much I wish I could ask you
Wish you knew how much I’m trying
Please, wait for the day of my solitude
Words are taking up capacity in my head
But, I need help to get them out
As soon as I awake and go to bed
I forget all that I learned about
Like a permanent duct tape to my mouth
But, the day will come when its ripped off
As long as you’re around
I know this thing can be stopped
A genius lies within this soul, mom
This is no joke or a perfectly curved prism
I know what happened to me was wrong
I know we will find a cure for this autism

My Reminders of Love and Faithfulness

“Let love and faithfulness never leave you;
       bind them around your neck,
       write them on the tablet of your heart.” Prov. 3:3

I wanted to share with you some things that have been around my neck and written on my heart lately:

MY NECKLACES

For many years now, I’ve loved unique necklaces. But, these days they’ve become less about a fashionable find, and more about reminders to me of love and faithfulness. A couple of Mother’s Days ago, we were in the throes of this new journey of autism, and my husband gave me a simple necklace that says “HOPE.” I’ve gotten a few more prized necklaces from that local designer, and whenever I put them on, they mean something to me very profound that causes me to pause. One says “BLESSED,” and another says “BELIEVE.”

My husband gave me another precious necklace for Christmas that I’ll cherish, designed by a  friend of mine who makes personalized handstamped silver jewelry. It was inscribed: JOSIAH. Zeph. 3:17.

My HOPE and JOSIAH necklaces

When we dedicated our son at 4-months old, Zephaniah 3:17 was the verse we chose as Josiah’s “life verse.” It says,

“The LORD your God is with you,
       he is mighty to save.
       He will take great delight in you,
       he will quiet you with his love,
       he will rejoice over you with singing.”

I loved that verse. Little did I know that it would take on even more meaning as the years progressed. We truly would need a God that was mighty to save and that was even more crazy in love with our son than we were. In the Hebrew, this verse translated gives the image that God literally “spins around” with joy over you and sings and shouts over you with joy! As I go forward to face the days ahead, I will bind that image around my neck.

In the months leading up to our son’s birth, we poured over the books of baby names trying to find the right “one” that had a decent ring to it. It was finally by chance that I heard the name “Josiah,” and it clicked instantly. My husband Joe liked it too, and we had it. Also drawn to the meaning behind names, I was inspired by what the name “Josiah” stood for in Hebrew: “the Fire of the Lord.” Later, when autism would come in and threaten to douse my son’s passion, range of emotions, and personality, God reminded me of his name. When I say Josiah’s name, simultaneously in my mind, I am declaring over him, “Fire of the Lord.”

It was about 8 months ago that I came across yet another meaning of the name Josiah in Hebrew: “whom Jehovah heals.” I took that promise and I wrote it on the tablet of my heart. I made up a little song that I sing to Josiah as I rock him with a “mash up” of those promises. “Josiah is whom Jehovah heals…The Fire of the Lord is in you… the salvation of God is for you… receive it now.”

When the circumstances of life rage around me, there are things that I need to have in place to remind me of God’s promises and hope for a future. These are things that become familiar and defining for life, so they can be recalled in the thick of the battle.

MY NOTE ON THE MIRROR

So, I have my necklaces. I have Josiah’s song. I also have a card that is stuck to my bathroom mirror. I was very low one day and had shed a lot of tears. I somehow found myself in Jeremiah, and I came across a verse that just leapt off the page at me. I personalized it, and put it where I would see it each morning:

This is what the Lord says: “Restrain your voice from weeping and your eyes from tears, for YOUR WORK WILL BE REWARDED, declares the Lord. Your child will return from the land of the enemy (autism). SO THERE IS HOPE for your future, declares the Lord. Your child–Josiah–will return to his own land.” Jer. 31:16-17

Jer. 31:16-17 on my mirror.

MY PROMISE NOTECARDS

Then, I have my “card wheels” and the journal that I have kept over the last year or so. I wrote every Scripture out that pertained to what I’m believing for in regards to Josiah, myself, my family, and healing. It is a quick roladex of who God is, what he said he’d do, and who I am in him. In fact, if you want to make your own, I’ve captured most of those Scriptures and prayers under ”Daily Soul Nutrients.”

Note card wheels by "Real Simple" with scripture.

THE SONG THAT REVIVES MY HEART

Finally, a couple months ago a friend shared with me THE SONG (“He Loves Us” by Jesus Culture) that has just spoken to my heart. I watch or listen to it when I need to be reminded of the love of Jesus that is not just some nice notion, but it is sustaining and it is FOR me. I love the line, “when all of the sudden I am unaware of these afflictions eclipsed by glory…”

I wouldn’t say I’m a deeply sentimental person. But, there are some things that just must be tied around my neck and written on the tablet of my heart until they become more true to me than my current reality. Trust me, this supersedes religion and denominational differences, whether you are expressive or quiet in your faith, are questioning or are believing to your toes. It’s more about asking yourself what it will take for God to invade your life and get to work at making you whole again. All my stacks of books about biomedical treatments and the steady stream of autism newsfeeds cannot reach my heart like Christ’s love and promises can. And I’ll forget and base my beliefs on my feelings if I don’t have these reminders on my neck, in my heart, in my ears, before my eyes.

What are yours?

The Week, Or ‘Weak’, In Autism

Satisfied desire is sweet to a person; therefore it is hateful and exceedingly offensive to [self-confident] fools to give up evil [upon which they have set their hearts].” Prov. 13:19

Something evil this way comes. It was not a very good week in the autism world. As the chatter and activity around autism kicks up in healthcare and government, the divide only seems to be getting wider. It’s becoming more clear that this revolution is going to be fought by parents, for parents, because the powers-that-be are NOT listening. At least that’s how I see it.

GERBERDING NOW PRESIDENT OF MERCK VACCINES

The most shocking news of the week–at least to those who care–is that former head of CDC Julie Gerberding has just accepted a job as president of Merck’s vaccine division. My Facebook autism-mama friends spread the news with fury. Let’s just say this woman is not well-liked. In fact, this Cruella Deville look-alike makes us want to go hide all of the babies from her before she makes a coat out of them.

"Get me those babies!"

She has been been a nemesis of the autism community that has been demanding answers for the past decade, and a collective sigh of relief was breathed when she stepped down from her post at the CDC. Now, she has been exalted to the esteemed position as Grand Poobah of vaccines. I like what this fellow blogger said, “That’s like appointing my fat ass as Executive Director to Hostess Snack Cakes.” May it be said and may it be known that as head of the CDC she had some conflicts of interest in how to address the autism epidemic that she denied? Go over to Adventures in Autism for the big picture.

MORE CONFLICTS OF INTEREST AT THE CDC

Speaking of conflicts of interest, the New York Times just came out with an article exposing a little more about how shady it is over at the CDC. It said, “A new report finds that the Centers for Disease Control and Prevention did a poor job of screening medical experts for financial conflicts when it hired them to advise the agency on vaccine safety, officials said Thursday…The report found that 64 percent of the advisers had potential conflicts of interest that were never identified or were left unresolved by the centers…But little attention has been paid to the potential conflicts of advisers to the C.D.C., even though that agency’s committees have significant influence over what vaccines are sold in the United States, what tests are performed to detect cancer and how coal miners are protected.” No wonder the cries of parents who say their children were vaccine injured has fallen on deaf ears!

AUTISM UP BY 57% IN FOUR YEARS–CDC STILL WISHY-WASHY

The CDC just released a study (from reporting period 2006??!?) that shows that the prevalence of autism is jumping dramatically–57% in four years. One in 110. I’ve got to say, I don’t get how they come up with the calculations–they look at eight-year-olds from different periods to see how many are diagnosed with an ASD, and apparently it takes them four years to prepare a report. I don’t know? Good enough turnaround time for government work? So, given all of the many 3-year-olds that are being diagnosed these days, I’m sure these numbers are way higher. But, nonetheless it supports a Pediatrics phone survey that was released in October saying that the rate was now 1 in 91.

Autism is rising, and we don’t know WHY. But what’s most troubling is that the CDC and the powers that be are still not addressing the elephant in the room. In a press conference, they skirted pointed questions about environmental factors and toxicants. They are still mostly about looking for genetic factors.  Neither CDC nor IACC have shown a sense of urgency or commitment to study environmental triggers such as the many toxins and pollutants infants and toddlers are exposed to (including from vaccines).

PEDIATRICIANS STILL STUCK

Dr. Bob Sears just came out with a very thoughtful article responding to these new numbers. What was disheartening was his assessment of his pediatric colleagues: ”But let me tell you what I continue to hear from my colleagues in the pediatric community: ‘There’s been no increase in autism – we’re just better at recognizing it.’ I just attended a pediatric lecture, and the speaker, a local pediatrician, stated this very clearly…” Dr. Sears continues, “Denying the epidemic is like a slap in the face of every parent and child affected. Wake up America! It’s time to get to the bottom of this!” In the comments portion, more nonsense talking about better diagnosis, people blaming the rise on older parents having babies, genetics, and the like. Wow, are we really still in autism’s stone age? At any rate, thanks Dr. Sears for speaking up and speaking out!

PRESIDENT OBAMA MAKES AN ‘INTERESTING’ CHOICE TO REPRESENT AUTISM

So, I don’t get this one at all. President Obama invited Ari Ne’eman–a 21-year-old man with high-functioning Asperger’s–to represent the cause of autism on a national level on his Disability Council. Here’s an article about it. The issue I have with that is that he doesn’t like the idea of trying to “cure” autism, nor does he look at it as a disability. Which is all fine and well I guess if you are a brilliant, high-functioning man with some sensory issues and some keen interests. For this mama who would love to have a conversation with her developmentally-delayed four-year-old (who is still in diapers), I would much rather have a parent or a strong advocate for doing something about this epidemic, thank you. I kind of think it’s a very poor choice President Obama made, and I seriously question his intentions of addressing the epidemic and the causes of autism with any fervor.

So, there you have it. This will not go down as our finest week in autism, I must say. But, you know what? There is a revolution happening on the ground… even if it’s not happening on the Hill.

Better to meet a grizzly robbed of her cubs
   than a fool hellbent on folly.” Prov. 17:2

Merry Christmas?

Let’s talk Christmas. Ugh. I hesitate to write about this because I’m tired of being a downer on my blog. I’m sorry. But, maybe someone else can relate, so here goes.

This Christmas season, my emotions have been living somewhere between *sigh* and *cry* most of the time. Not that most people I see on a regular basis would know that. It’s just this icky heaviness that has nestled in on the top of my heart and in the pit of my stomach. I work at a church, so we are all over Christmas, working really hard to make it a great experience for the thousands attending. Why do I just want to fast forward past it?

Yesterday I went shopping for presents for Josiah. I was at Toys R Us and that “feeling” kicked in. Up and down the aisles I went looking for something that would make him smile. I was saddened that it was the toddler toys that he would like. The ones that light up and spin and make noise, and aren’t very complicated. Seeing all of the toys lined up there, I was confronted again at how far behind he is in his development. And then I saw about three typical little blonde-haired boys throughout the store that were about 4 yrs. old, Josiah’s age–one imaginatively playing with the train set, one talking a million miles an hour to his mom about a Bob the Builder toy he just had to have, and one just basically arguing with his mom that he didn’t want to leave. These are simple scenes that I am so attuned to, but they will likely not even stick in the short-term memories of most of these moms.

I realized that part of this feeling I’m wrestling with has to do with remembering the Christmases of my childhood, and not being able to “recapture” those magical, wide-eyed moments I had as a kid. We used to have about 20 people over for Christmas–grandparents, cousins, friends. It was festive! My dad, who went home to be with Jesus 10 years ago now, loved Christmas in a Chevy Chase sort of way. He decked out the houses with lights, and he’d play Santa for the community kids. He loved flannel shirts, and egg nog and oyster stew on Christmas Eve. Daddy’s gone. Both sets of grandparents are gone. Mom lives 1529 miles west. Brothers live about that far south. I feel like I’m stuck out here on the Island of Misfit Toys. We won’t be making the trek back to see my hubby’s parents together this year because it’s just easier not to with Josiah, at least until spring.

And, Christmas is lived best through the eyes of children. My only child doesn’t know it’s Christmas. Well, if he does, he can’t say. And all those stories about Jesus and Mary and Joseph, and Santa and Rudolph and St. Nick are just lobbed out there into the air in little installments by me, but he can’t respond with eyes all lit up. Asking questions and having to be shooed back to bed on Christmas Eve because he’s trying to stay awake to catch a glimpse of Santa. I want this for my precious little guy (thankful he’s such a happy little dude, though). I want this for us. But Autism just takes off with it like a bandit–robbing, robbing, robbing. Grinch that it is.

I think if more people were just allowed to be honest, Christmas time could be more of an opportunity for encouragement for the downtrodden than a magnified reminder of what’s wrong in their lives. From my vantage point, Christmas feels like this perfect picture for a lot of the families with young kids that I know. When life is good, it’s really GOOD. But what about those that hurting this Christmas? Wouldn’t the message of Christmas be so much more welcomed if we just said, “People, NONE of it really matters as much as the GOD WITH US part.”

To E. whose in her late 20s and lost her dad last summer, after her mom died of cancer just a couple years before–GOD IS WITH US!

To. J. whose husband is serving in Iraq and who just had to increase her autistic daughter’s seizure medication–GOD IS WITH US!

To K. who is struggling financially and can’t afford much for her kids for Christmas–GOD IS WITH US!

To M. who is feeling like giving up because this spiritual and emotional journey is so much effort–GOD IS WITH US!

To A. whose house is close to being foreclosed upon and whose husband’s contracting work has run out–GOD IS WITH US!

To A. who has felt hurt recently by some people who she valued as Christian friends–GOD IS WITH US!

Maybe there are some people we know in our lives that might be having a hard time this Christmas. How about we simply acknowledge that for them? The other day I sent an email to a friend just to say, “I wanted you to know I’m thinking of you. I bet it’s a hard time of year for you because you’re missing your parents.” She replied, “Thank you for knowing that it is hard and reaching out to simply tell me!” Then we don’t leave them without hope.

We can’t forget why we celebrate Christmas in the first place. “For to us a Child is born, TO US a Son is given…His name shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace… His name shall be called Immanuel, GOD WITH US.” Which one of these do you need Him to be for you right now? I’ll take all of the above, thank you. Praise Him for such a Gift.

Truly, Merry Christmas!

…for He [God] Himself has said, I will not in any way fail you nor give you up nor leave you without support. [I will] not, [I will] not, [I will] not in any degree leave you helpless nor forsake nor let [you] down (relax My hold on you)! [Assuredly not!] Hebrews. 13:5 b AMP

You Got the Diagnosis–Now What?

Two years ago, we got slapped with our son’s autism diagnosis. Feeling a bit shell-shocked, we walked out of the autism-specific clinic carrying a heavy diagnosis and a very light folder that included some pamphlets on what to do now. Of the pamphlets, there was one on creating a living will, one on genetics counseling, and one on tracking devices (for your kid who will likely be a “runner” and may drown in a nearby pond). We also got the lecture from one of the doctors that we can “waste our money on THE diet and all that biomedical stuff that is purely local wisdom and anecdotal,” but he wouldn’t recommend it. All in all, crap sandwich.

I buckled up my sweet little curly-headed two-year-old into the backseat and couldn’t help but wonder about his future. My husband and I looked at each other, emotionally worn out. It was like we had officially been handed down a life-long sentence, and we knew we were on our own. WE would have to forge a pathway for our son and shoot for success because no one else would do it for us. If hope didn’t fall in our laps, we vowed we would go find it for ourselves. So, it was from other autism parents, and in locating the right books, and Googling until we unearthed some treasures of hope, that we created a sketchy map for ourselves. Granted, the land of autism is more rocky, treacherous and mysterious than the Afghanistan wilderness. But the “wisdom of the locals”–as it were–can be the most helpful for locating the caves and navigating the mountain passes, if you will.

So, while I am not the best and brightest in the autism world, I will share with you my crash course for what to do if you have just received an autism diagnosis. Aside from the obvious loving on your kid like crazy, we’re talking first-things-first, and you kind of have to do them simultaneously. Sorry, this will be long. I invite others that ”have gone before” to add to this in the comment section.

MY RECOMMENDATIONS (I’m not a doctor, nor do I claim to be):

1. You must know that you cannot trust everything that your doctors tell you. You’ve got to do some research and take the reins on this one, as scary as that may be. You’ll come to know that there are a couple of schools of thought on autism. You’ve got your “it’s genetics and hard-wired” school, and you’ve got your “something environmental triggered susceptible genes to result in autism” school. Here is where it’s a little like religion. You will probably have to choose what your denomination is because that will influence your course of action, the books you read, the conferences you attend. There is some faith involved. Generally, either you are an “autism Lutheran” or you’re an “autism Charismatic.” (Think, though we’re all on the same general team, one side calls the likes of Jenny McCarthy a heretic, while the other side reveres her as a prophet.) Somewhat difficult to be a lukewarm autism parent if you have any sense of curiosity to find out what happened to your kid.  

2. Watch the little documentary we produced, called “Surprised By Autism.” In thirty minutes, you can get a quick overview of some of the basic resources and services to know about, and make a heart connection from the viewpoint of a parent. My husband created this documentary with parents new to the diagnosis in mind, mostly because some of the videos shown at “autism orientation” meetings we attended were old, outdated, and frankly–SCARY! The parents looked like they wanted to fall on pitchforks and get it over with. We were not willing to let that be us.

3. Books you should pick up and devour immediately: 1. All three of Jenny McCarthy’s books: Louder Than Words, Mother Warriors, and Healing and Preventing Autism. 2. Facing Autism. 3. Autism Sourcebook. 4. Overcoming Autism. I know it’s a lot and you probably won’t understand it all right away, but it will give you a foundation you will appreciate, and most importantly, HOPE. (Most of the links are under my “recommended reads” in the navigation.)

4. Yes, I would say you should try THE DIET. Perhaps you’ve heard these code words. GFCF. What in the world, right? Well, gluten-free, casein free (wheat and dairy-free) is  the foundational autism diet that many parents attest to helping to “lift the fog” from their child. Smiles can return, attention, focus, etc. First step: eliminate all dairy. You really can do this because there are a lot of substitutes out there, but you must be aware of all the hidden places dairy is lurking, and it’s got to be a very strict approach to see if it’s working. BTW, soy is not a great substitute, as studies are showing, so we’re talking replacing your cow’s milk with stuff like rice milk, almond milk, potato milk, hemp milk–that sort of thing. Get out your Birkenstocks and wool socks, my friend, you will learn to love the health food store–though luckily many of the major chains are coming around to offer these alternatives. You should be able to tell within the first month if there is a difference. Then, you can follow with taking out gluten. I would recommend these books: Book With A Long Title by Karyn Seroussi, and Special Needs Kids Eat Right. And, there are about a billion things on this ANDI website.

5. Know your educational therapy options. So, your county might have some autism services to offer you, along with your school district, and maybe some outside speech and occupational therapies through various centers. Unless you are really keyed-in, you may miss this whole other world called “Applied Behavior Analysis”–or ABA–therapy. I ask you to exercise a little discernment here. In my experience, the county, etc. will tell you that the 3-10 hours of one-on-one therapy they will offer your child is enough, but the research says differently. Recommended therapy for children with autism is 25-40 hours per week, and the most scientifically proven therapy for kids with autism is ABA (which has some offshoots). Look into this option to see if it’s a fit for your child. There are therapists that will come into your home, and there are some autism therapy centers that offer ABA. You can find out more about in-home options at the Lovaas website, or seek out center-based options like Partners in Excellence. You’ll have insurance and money hassles to deal with, but it’s worth it. There are many other options for therapy. I’m just sharing what I know here.

6. Bookmark and refer to these websites often: www.generationrescue.org,  www.talkaboutcuringautism.org, www.autism.com. These will lead you to many more resources.

7. Get your child on a path to physical wellness. Autism is not just a genetic or mental disorder. There is stuff going on in bodies of our kids with autism that typically is only being treated by alternative medicine practitioners. Vaccines have likely played a factor, maybe ear infections, detox issues, frequent antibiotics that have messed some things up for your child. The standard autism doctors in the “biomedical” world are called DAN (Defeat Autism Now) doctors. They are licensed and trained in this approach and can be found throughout the nation–many are wellness or chiropractic doctors as well. Go here to find one in your area. It’s not covered by insurance usually, but at least start with a consultation and develop a course of action. There are also things nutritionally that you can do right now, without the advisement of a doctor–vitamins and nutrients that could make a difference. Jenny McCarthy’s latest book is the best I’ve seen to address that, including recommended dosages, brands, etc.

8. Communicate with your spouse. Friends, in the early days, this is a sprint but it’s training you for the marathon. Life is not the same, nor will it ever be. There is grief. There is pain. There is crying. There is loneliness. Faith is shaken. Love is tested. High days. Low days. Hoping days. Coping days. The best of you. The worst of you. It’s all a major journey and process. And, I say that all because you must give yourself and your spouse a break. This IS a big deal, and each of you will wrestle with the emotions and stress in a different way. Just don’t close yourselves off to each other. Be open and compassionate, and try to get on the same page. Fight autism. Not each other. Read this. Eighty percent of marriages fail when faced with autism. Will you make a commitment to each other to close the backdoor, no matter what? Even the strongest marriage will face very distinct trials, and commitment will have to carry you past how you “feel” about each other at times.

9. Get some support in place. Run, don’t walk, to find at least one other parent out there who has a kid with autism, and subscribes to some of the same basic theories as you. Your circle will expand from there. I would say it’s best at first to find one that has a child that is less than 2-3 years older than yours. Their story will still be fresh, and their resources current. You also have to be careful not to compare your child with theirs. Autism is a spectrum. Each child is different. Thankfully, many friendships are able to be forged online these days. That has been huge for me. But, I have a special place in my heart for that one mom that I met with that got me started, let me cry and pick her brain, and took me under her wing in those early days. There are some good support groups out there. I would recommend TACA.

10. Take care of yourself. I’m talking physically, spiritually, mentally, emotionally. You may need to find a therapist or counselor. Get in your Bible. Find out God’s promises. Try to get some sleep. Get away from autism sometimes. Go out on a date. Eat right (not emotionally eating, like I’ve been doing). Exercise (do as I say, not as I do). Get out with girlfriends. Sit and have some coffee alone. You NEED this. You’ve got to, or you’ll burn out. And don’t worry… your heart will probably be re-purposed by autism, but you will dream new dreams and brighter days will emerge again.

Well, I think a top ten will suffice for now. There’s a lot more like helpful products and going green for your child, but this will get you started. My hundreds of  hours of reading, researching, learning and living about autism boil down to this basic cheat sheet for you. I hope it helps. There are so many of us out there cheering you on. You’re not alone!

Delays, Dreams and Destiny

It’s been nearly seven weeks since I’ve written a post. I guess it’s kind of been like a long night of the soul. I just couldn’t bring myself to write for whatever reason. Uninspired, maybe. A little stuck. A lot stuck. Yet, at the same time, going deeper in this spiritual quest I’m on. I’ve been doing some reading, some journaling, a lot of praying. In the meantime, my blog has sat collecting dust. Perhaps Facebook and its bite-sized morsels of the beautifully mundane and funny, and the endless volleying of daily autism news via bulldog autism moms has filled a little bit of a void that this blog initially provided for me.

But I’m not quitting on my blog! Far from it. I’m just realizing more of my place amongst all of the voices of parents crying out for advice, for justice, for hope, for answers in this autism quagmire. Perhaps it’s a lonely niche I’m feeling led to because it’s largely spiritual. (Although www.rhemashope.wordpress.com does it better than anyone I’ve found.)

What Do I Have to Say?

While I do a lot of research, and am up on and in the camp that rues the vaccines, I have nothing more to offer to that discussion, really. Although I cheer on those who are going before government to lobby for our kids, I really can only offer an email here and there to my congressman right now. While I am going the biomedical route for my son, nothing has helped so profoundly that I can shout “eureka” from the rooftops to enlighten other parents to what we discovered. Even though I love ABA and its offshoots, my son is still struggling. And, my son is on the GFCF diet, but quite honestly, I’m not going to be writing any cookbooks–unless heating up gluten-free Dino Nuggets in the toxic microwave counts.

So what is my purpose in all of this? I believe as it unfolds, my voice will emerge with more clarity as it gets boisterously tangled with the messy spiritual side of walking through autism. That sounds so ethereal, but really it’s more earthy than that. It’s real life. It’s here and now. It’s not in a church building. It’s not waiting for the other side of Heaven to make everything okay. It’s not about getting a little lift from reading a daily devotion with your Wheaties. This is real, in-the-trenches Christianity. The kind that’s with you at the playground when your heart starts cracking. The kind that sustains you through a tantrum–yours or your child’s. The kind that kicks your butt out of the Valley of Doubt and Weeping for the fiftieth time. The kind that encourages another heart when yours is downtrodden. The variety that actually believes that God wants our bodies well. It’s not going to be safe. It’s not going to be pretty. But, I believe it will be worth it! You want to come on the ride with me?

Here some “real stuff” that has happened in the past seven weeks around here:

• When we thought our new state insurance costs would be $5,0o0 out of pocket max, they will be $8,000.
• Our son’s primary therapist moved away–we miss her.
• Josiah has regressed it seems–even fewer words, poor attention. It feels like he was better a year ago.
• Josiah has stopped sleeping through the night–I’m up with him 2-3 hours in the middle of the night, generally.
• His therapy center called us in for a parent meeting, concerned about increased sensory-seeking and inability to focus on his tasks, and they are wanting to go to alternative measures for communication like PECS and perhaps an augmentative speech device to hopefully help his speech along.
• We’re trying some new biomed stuff, including trying to fit in chiropractic appointments twice a week. More time, more money. Where are the results?
• We’re supposed to seek out additional speech therapy outside of his center. With both of us working full-time, I’m not sure when.

It all just feels so hard, right? Unlike other things, like New Years resolutions, you can’t quit. You also can’t escape or deny or numb. Sometimes you really want to. But you cannot go backward–you know too much. Where would you go anyway? You wake up every morning with this beautiful and sweet child before you, and you realize the weight of carrying your own life is light in comparison to carrying his. But there are more lives like his, and more families like yours, and that rends your heart too.

Desperate for the Destiny and Destination

There was a time that I thought autism came to shatter our dreams, but I’m becoming more convinced that it is moving us toward our destiny. Sickness is never good–and it is never from God. After hundreds of hours of study and combing through God’s Word, of that I am assured. But my life and this journey is not a mistake. My son’s life was not a mistake. God starts with us every day right where we are–using ALL of where we’ve been. These experiences will not go unused. Will we trust Him enough to lead us through? Will we have the fortitude to go the distance?

I’m afraid that up to this point in battling autism, I have not been able to find the “answers” like some people have in those things that I can control myself. I’m a classic “achiever” and “learner,” and this road has roughed me up pretty bad. If I can MAKE something happen, I will. If I can unearth the holy grail of autism research, I will Google my fingers bloody. If I feel like I’ve failed, I can take it personally and get profoundly frustrated.

Now, I’m desperate. But in a good way. Desperate presses through the crowd to touch the hem of Jesus’ garment. Desperate believes Jesus when he says your child will live, even though people reported that she has died. Desperate craves more of the Lord than “Jesus in a Box” that only pops out when I choose to wind up the handle. When I get desperate, I have seen women come into my life and encourage me beyond belief. When I get desperate, I’ve got to pay closer attention to my marriage. When I get desperate, I stop just hemming and hawing over the latest report on vaccines or the flavor-of-the-day autism cause/cure. I have to go to the Healer for my little Josiah. He’s all I’ve got.

Oh, all of you who are beaten down, broken and battered, are you ready to dream again with me?

When we walk in the valleys, we have a decision to make. Our pain can make us wither, or it can awaken our hearts to be passionately real. Our losses can destroy us, or they can help us grow stronger. Our actions can feed the devil’s victimization of our lives, or they can point us to the Word of God.

True dreamers will take their anger to the foot of the cross where they will find a heart big enough to hold their pain. They will begin to understand who God is and what He thinks about them.–Jill Austin, Dancing With Destiny

Celebrate Good Times Come on. Come on!

I am a terrible person. I am. Today the thought crossed my mind that perhaps I should change my religion to Jehovah’s Witness so I never have to celebrate a birthday or Christmas again. Today is Josiah’s 4th birthday. It’s wrecking me pretty bad. I beat myself up more than anything. “Why can’t I just be stronger? Why do I still want to crawl in a hole and weep? Why can’t I just stuff this ache in a far away place and enjoy the day for what it is, and my son for who he is? There are better moms of special needs kids than I am. They can embrace the journey and go on. I can’t.”

Friends, I’m not on anti-depressants, but right now I wish I was I guess. I’m not a big drinker, but I would like to cozy up with a box of wine and just mask this, this loss. It’s not like I woke up with a lot of expectations or anything. In fact, that I woke up with any clarity at all is a miracle, given that I was up with Josiah between the hours of 1-4 am again. To be truthful, I’m probably just incredibly selfish and self-absorbed. Josiah had a fine old time today, and it is HIS day, after all. I just grieve because he doesn’t even know it’s his birthday. I’m messed up because I’ve always had high expectations for myself and everything I do, and I CANNOT make my boy right. I would endure anything if by doing so I could make him right.

And then I feel guilty for saying that. He’s my son, and he’s wonderful the way he is. But, you know what, I wish I could have woken up this morning and gotten the house ready for a bunch of the neighborhood kids to come over for a birthday party. Josiah would have been so excited because everything was decorated with Cars or Spongebob or Transformers, or whatever the boy obsession of the day is. He would have had a cool cartoon cake–not some lame GFCF chocolate cake with soupy dairy-free frosting and sprinkles I tried to make so he’d have something. Well, he wasn’t interested in eating the thing that cost about $20 to make anyway. He also had no idea what it meant to blow out candles so that was pretty anti-climactic. And as for the party, it was just me and my husband and his parents visiting from ND. Not another kid. Not a sleepover. Not a pinata.

Again, Josiah was a happy camper today, so what’s my problem? He was so excited to see the mini trampoline we got him, and he loved the toys he got that lit up and made all sorts of noise. But everything was magnified for me today. I just changed my 4-year-old’s diaper. His words today were… jump, swing, ice cream, push, come on, banana, muffin, get out. That’s about it. When, oh when is this stuff not going to affect me? It’s been two years. And it’s been exactly that long since I walked through the day with that wonderful feeling that all was pretty darn right in my world. I want to feel that again.

I guess my problem is that I’m scared. And tonight, I’m definitely coping not hoping, which is pretty ironic being that my whole blog is supposed to be about hope. I cannot comprehend how we ended up with our child having this disorder that NO ONE can tell us what really causes it, and we really don’t know what his particular “ceiling” would be. And, his success in life might be dependent on me to keep chasing that next thing that just “might work.” And, who knows–tomorrow they may come up with some breakthrough that cures all of these kids by blocking some gene receptor or something–probably in the form of a vaccine (again, ironic). And now 1 in 58 boys in America have this disorder, but not enough people care about that stat. And I don’t know if my son will go to the prom, or have a girlfriend, or work. And I don’t know if I’ll have any other kids, or grandkids for that matter, and life just isn’t how its “supposed” to be. And, is God going to come through here, or what? Pretty dumb how a person spins everything out of control, isn’t it? But I’m going to let myself go on the spin cycle right now, damn it.

Am I the only one that is thinking this stuff? I’m probably honest with my feelings to a fault. I’ve never been able to “stuff” them, and that probably makes some others feel uncomfortable. It’s not that I’m not an optimistic person. I just have to experience my feelings to get to the other side, I guess. However, I’m sure my husband would appreciate a little more of my “stuffing” with his dinner.

I often wonder if I grabbed Josiah and headed to the hills if the words “normal” or “typical” would even matter. Who would care if the kid didn’t think or act like the other kids do–there wouldn’t be any other kids. What are we all comparing our own lives to anyway? Who made the rules that said life had to be a certain way? I don’t know, but this isn’t how I pictured mine going. So, I feel guilty and ungrateful and selfish and discontent tonight. Because I do want my life to look… normal. And I want my son to eat a bunch of sugary, delicious normal birthday cake until he gets sick, okay?

Alright, I have embraced my humanness, and now I’ve got to bring it before the Lord because he told me not to worry about tomorrow; today has enough worries of its own. I hope I didn’t thoroughly depress you, reader, because I feel better now that I got all of that out.

^{Lamentations 3:19-30}

I’ll never forget the trouble, the utter lostness,
   the taste of ashes, the poison I’ve swallowed.
I remember it all—oh, how well I remember—
   the feeling of hitting the bottom.
But there’s one other thing I remember,
   and remembering, I keep a grip on hope:

 ^22-24God’s loyal love couldn’t have run out,
   his merciful love couldn’t have dried up.
They’re created new every morning.
   How great your faithfulness!
I’m sticking with God (I say it over and over).
   He’s all I’ve got left.

 ^25-27God proves to be good to the man who passionately waits,
   to the woman who diligently seeks.
It’s a good thing to quietly hope,
   quietly hope for help from God.
It’s a good thing when you’re young
   to stick it out through the hard times.

 ^28-30When life is heavy and hard to take,
   go off by yourself. Enter the silence.
Bow in prayer. Don’t ask questions:
   Wait for hope to appear.
Don’t run from trouble. Take it full-face.
   The “worst” is never the worst.

Pitching My Tent in the Land of Hope

Ten years ago, when my youthful husband and I were more adventurous, we bought a little tent. We were going to a Christian music festival in Willmar, MN, and thought we could save a little money by camping out on the grounds. Now, neither of us really had much camping experience, but the tent just kind popped right open and was ready to go–so a no brainer, we thought. We could do this. It would be fun, right?

Tent and sleeping bags nicely tucked in the trunk, we headed off on a very ambitious 4-day trip. It was a crazy mixture of business and vacation. We arrived the first night and stayed in a hotel, because I had an interview a couple hours away in the Twin Cities that next morning. It stormed and rained like crazy all night and into the a.m., and that put my nerves on edge already. But, we had been looking for the opportunity to move from North Dakota to the Twin Cities and I just felt like things were lining up. I had already had two interviews for one job that I ended up not getting, but this would be the second interview for another job opportunity at a performing arts theatre. So exciting. My husband also had an interview lined up at a community TV station that would be the “bookend” of our trip. I just knew God was moving.

The second interview went great, and they said  I could call them the next day (this was before cell phones). So, we travelled back two hours to our music festival, full of optimism and ready for some good tunes. The ground was still a little soggy, but no matter. We found a spot for our tent and got it all set up so after enjoying hours of concert sets, we could just fall into our little nest. Well, we had a hard time finding the car in the dark–and the Kumbuya campfire antics by younger campers didn’t make for great sleep–but we made it through the night just fine.

Day 2 of the festival. Wow, it was windy! Really windy. But, the tunes were great so no matter. I found a pay phone to nervously make my phone call to my potential employer in the afternoon. While I did that, my husband ran back to our tent to get something. Within 10 minutes, our tune changed. I didn’t get the job. Brutal! And Joe showed up to reveal that our tent, along with our sleeping bags inside, was in a tree. Seriously, the little L-shaped tent “stakes” that came with the tent were not made to withstand a soggy ground and gale-force winds, apparently. Our tent was IN A TREE, and my new career dream was buried. This trip didn’t seem so fun anymore.

We pulled our tent down, and headed into town to find some real tent stakes and get some food. We nabbed the last tent stakes in the entire town at a local K-Mart, and then had some Sbarro’s pizza. We contemplated just forgetting the festival entirely and heading out. This was too hard. It wasn’t what we signed up for! But then, we bucked up. We decided we were not going to let this lick us, and we were going to enjoy the rest of the festival. Joe still had his interview, after all. We got back with a new resolve and replaced our 3″ stakes with 6″ stakes hammered in good. I decided I was going to worship God that night, even if I didn’t feel like it, and until I felt like it. RESOLVE!

Why did I tell this story that has gone on far too long, and what does it have to do with autism? I tell it only because I came across a great scripture in the Message translation the other day that reminded me of our tent episode:

I saw God before me for all time.
      Nothing can shake me; he’s right by my side.
   I’m glad from the inside out, ecstatic;
      I’ve pitched my tent in the land of hope… 
   You’ve got my feet on the life-path,
      with your face shining sun-joy all around.  Acts 2:25-28

 I feel like I have pitched my tent in the land of hope. Even faced with my son’s autism, I’ve discovered a little patch of hope to set my tent on while I’m on this journey. But, today, I came back and found my tent in a tree. We had a parent meeting at Josiah’s therapy center this morning and, well, it seems these last six months he’s plateaued in his progress a bit.  It’s causing his devoted therapists to have to get creative and rally again to push him further along. I looked at the mountain of “skills” on the progress sheets that must be achieved, and how relatively few are mastered, and I could feel the stakes starting to come up from our tent’s edges. Josiah turns 4 in one week, and time is not on our side like it once was. We’ve all worked so hard to do EVERYTHING we can, and I just thought we’d be further by now. Much further.  I want to live in a sturdy, secure house, not in a stupid TENT!

But through the tears, I find the resolve once again to hope in God.  I choose to believe him when he says he’s right by our sides on this life-path. He could change everything for our boy so fast. He is the Healer, the Provider, the Restorer, and so I’m reminded to try not to be overwhelmed by this burden that  I cannot humanly make right. I’m dependent on him. Wouldn’t you know it, I came across these verses this morning:

Clear lots of ground for your tents!
   Make your tents large. Spread out! Think big!
Use plenty of rope,
   drive the tent pegs deep.
You’re going to need lots of elbow room
   for your growing family…
Don’t be afraid—you’re not going to be embarrassed.
   Don’t hold back—you’re not going to come up short.  Isaiah 54:2-4

Okay God, bigger tent. Longer stakes. Not time to pack up and run. I won’t give up on hope. I will stay firm in faith. You said I won’t come up short. I believe you.

(By the way… Joe got the job at the end of that trip, and he’s still working there today. We moved to the Twin Cities, and that job that I was denied for, I ended up getting a month later when their hire didn’t work out. He’s a faithful God.)

True Blue Friends

When Josiah was 15 months old, he and I ventured off on a plane together to Arizona to visit some family. I knew he was at an age where he would realize that he was away from his usual surroundings. One article I read recommended to help your child bond with a stuffed animal or blanket prior to a trip so he would have some comforts from home. So, I grabbed a little blue duck that his grandparents had given him for Easter one year, and a blue blanket he got as a baby gift. I put them in his crib with him; I took them in the car and wherever we went. They were a big help on the trip. And, to this day, he LOVES “Duck” and “Blanket.”

Duck and Blanket are a duo. Usually where you find one, you’ll see the other. They have been eaten over, puked on, pooped on, dragged on the floor, dipped in the bathtub, left behind couches, dropped on the sidewalk, washed multiple times, unravelled, and loved like crazy. Duck used to have a satin tag that Josiah would run between his fingers until it finally disintegrated. Now Josiah kind of runs his fingers over a “ghost” tag. Hey, whatever get’s you through the day!

Somehow Josiah is able to dutifully leave duck and blanket behind in the car as he goes into his therapy center every morning. But they are the first things he grabs when he gets in the car at the end of the day. I’m inspired by his devotion. I still get a flutter in my heart when I see Josiah’s arm wrapped around duck when he sleeps. So, Duck and Blanket, though you might be a little worse for wear, you become more valuable by the day to this little boy of mine.

A brand new "fluffy" duck.

Duck after a bath today.

Josiah hanging out with Duck, making phone calls.

Tumbling with Duck and Blanket.

Blanket auditioning for a role in a Christmas pageant?