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.

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

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.)

Homage to Poems about Raising Special Needs Kids

Okay, here I go. I am about to offend a whole lot of people. I just have to say I’m sorry upfront and I hope you’ll forgive me. I’m headed into sacred territory. Coping territory. The place where good, caring people go to harvest sentiments to “make you feel better” about having a child that has some sort of special need.

One of the bloggy mommies that I read said it first. She just came out there bold and brassy and said it… “I despise the Holland poem.” GASP. You know the one… raising a special needs child is like getting on a plane expecting to go to Italy but you arrive in Holland, but Holland ain’t all that bad, it’s just different.

Well, I will see your Welcome to Holland poem, fellow blogger, and raise you the God Chooses Mom for Disabled Child article my Erma Bombeck. This is the one where God sees a really awesome woman with a lot of great qualities and says, “Let’s ‘bless’ her with a child who has a disability. It will teach her something amazing through it and she will envied and will be a saint herself because of it.” Hmmm. Isn’t that nice of God?

Next, another prose devoted to the character of our Heavenly Father: The God Said… poem. It my own words, I would say this is the series of the most frustrating answers to prayer I have ever seen. It’s like, “God will you… NO! If you would just… NO! I really need… NO! Could you please… NO!” Okay, glad I asked, I think.

Now, don’t get me wrong. There are some nuggets of truth in all of these sentiments and well-crafted poems. But, I might be going out on a limb to say that it makes people who aren’t going through the reality of raising a special needs kid feel better reading these than those who are. So, there is a rush to forward these links to your friend or family member to brighten their day. I’m inviting pushback here if I’m out of line. Maybe these do make you feel better.

Personally, I’m so thankful that I encountered these links though, along with some of the things that I have heard from very nice, well-meaning people in past two years. Things like: “God knew exactly what he was doing when he gave you Josiah as he is, because he knew you would be strong.” “You’re so creative, so God gave you a child with autism because he knew you would work really hard to play with him.” “Just think about what all God is going to teach you through this.” I found myself getting angry with God with each new phrase. How could he do this? If I was so good, and tried so hard to live for him, THIS was my reward? Not cool.

But, wrestling with all of this sent me on the most prized spiritual journey of my life. On December 12, 2008, I wrote this in my journal:

Here I am, Lord. I have some questions and I look to you for answers. I want to put aside any of my preconceived notions, my theology, religion, or advice from others, and I want to seek You for the answers. Straight up, what does your Word say?

> What do You say about healing–physical healing? Is it still for today?
> Do You allow bad things to happen to us to teach us a lesson?
> Do You bring sickness and disease to some people’s lives so You can use them for a greater purpose?
> What are the lies we tell ourselves about who You are and the place You have in our affairs?
> Do You withhold healing and help based on our level of faith and what we do?
> What are the blessings I’m entitled to as Your child?
> What does it take to get a miracle? Show me. I need healing for my precious son’s mind and body. How will it come?

I have devoted these past 8 months to studying God’s Word and listening to different sermons online addressing these questions. Scripture after scripture has re-energized my prayers, and has made me fall in love with Jesus all over again. Have I learned to be more patient? Sure. Have I learned a lot through suffering? Yep. Do I love my son and celebrate him more because of it? Certainly. Mostly, I’ve learned about God’s true character. I’ve been challenged not to put God in a box, and not to attribute things to him that are not in his nature. He is a good God, and he keeps prodding me on to hope, faith, and one day… victory.

I’ve said it before, and I’ll say it again. Either God’s Word is true, or he is a liar. He makes bold claims. “I am the Lord… I publicly proclaim bold promises. I do not whisper obscurities in some dark corner so no one can understand what I mean. And I did not tell the people… to ask me for something that I did not plan to give. I, the Lord, speak only what is true and right” (Is. 45:19).

What does he promise you? What does he plan to give you? Have you ever looked to see? Grabbing a nice Scripture verse once in a while for comfort is kind of like reading those poems I referenced earlier. It will give a short-term burst of consolation. But, God is not about simply consoling us. He is about saving, transforming, delivering, growing, directing, relating with, and loving, loving, loving us in the long-run. I challenge you to engage in your own journey to discover what he’s really like. I believe it will lead you into territory that looks more like hoping than coping.

3 am Ramblings by a Tired Mom

In writing this blog, I swore to myself that I would point to hope and at the same time be really authentic about my feelings. So, while the last four nights Josiah has slept great (thank God!), before that I had three nights of very interrupted sleep. For many parents dealing with autism, erratic sleep is a constant reality for them. Something goes pretty whacky in your mental faculties to “deal” when you’re exhausted. I captured this poem (don’t even try to see if it fits into conventional stanzas) during one of those times for me.

3 am. Woken again.
What prodded him up?
What ceased sweet sleep?
Mild mannered boy by day
Whirling dervish in darkness
Melatonin drops—ha! No good.
Prayed he’d have good rest
Feel like I’m obsessed
Trying to have a decent night
He pounds. He wraps on the wall.
Rakes the vent. High squeal.
Make it stop, Lord. Peace!

 Can’t enforce, bribe or plead
He doesn’t get it. I need sleep
A full workday arrives in moments
Have to perform 100 percent
Fractured faculties—mine—
Because of his. What is this hold?
My neck gets hot. Want it to stop
He yelps. Turns circles. Laughs.
Jumps on the bed. Summersault.
Touching everything in the room
What is driving him?

 Won’t stay on my lap to be calmed
I’m tired and adrenaline surges
Good God, it’s nights in a row
Now he’s jumping on the bed again
Not sleeping in it
I feel utterly powerless
Make him mind? Ha, I wish I could
I’m in prison

Sweet angel face, love you more by day
You don’t know better
Only God himself could untie this fetter
I’m exhausted and broken
Where are my prayers going?
Your eyes look puffy too
Why do you fight it?
Babble, babble, yet few real words.
Jump. Jump. Still going.
I sit here not knowing when
My head will hit the pillow again

 When I dream, it’s better
Sometimes I get to see you whole
Life is different. Right
Then it’s broken by a thud
Come on, rest tonight, please
I lay and hold my breath
Whimpering means he’ll go back down
Laughing, and it’s going to be a while

 It’s now 4 am and I feel the weight
Autism, just how much will you take?
God, I’m trying not to break
He’s so beautiful. Gorgeous.
Inside he must be tangled up
Almost two years now like this
Days marked on my heart
And on my face too
I don’t want to be upset with him
So I both seethe and pray in silence

Mother’s spirit broken at the moment
But chasing hope in the morning
The morning. Oh, the morning

Meet “Marta,” My Cultural Au Pair

For you faithful readers out there, I’m sorry that I have been so lamely absent from the blog for about a month! “Me time” is just nowhere to be found these days. I remember back before we had a baby when my husband and I would comment, “Oh, we’re so busy. I mean between working out, shopping, going to concerts and plays, watching movies, working AND doing the laundry, I just want to lay around today. So, successful “laying around” could commence by watching an entire season of Alias in one 16-hour day or doing a little reading, taking a nice two-hour Sunday nap, followed by a stroll around the neighborhood. Oh, how blissfully naive I was!

This full-time working wife and mom who has a little guy with special needs that demands full attention–along with a house to keep running–is wondering how to get it all done. And, I just have one child, so kudos up and down to you moms and dads out there who treasure their few minutes of bathroom time as if they were given a day pass to a spa!

There’s just something about the mental toll that dealing with autism takes on a parent too. It’s not like life wouldn’t be busy if autism wasn’t a part of ours, but it’s also mentally, spiritually, and emotionally weighty. I don’t mean to be whiny…I’m just sleepy.

But, around our house, having a sense of humor has gotten us through some tough times. For instance, we have an imaginary nanny/housekeeper named “Marta” that my husband and I “call for” when we need some extra help. You know, like last night when I fell asleep at 11:30, only to be woken up by Josiah at 11:50 who seemed to think he was ready to play for the day. “MARTA!!! Could you come up and take care of Jo Jo while we sleep?”

“Marta! We’re kind of hungry. Could you fix Josiah a nice organic, GFCF meal and also whip us something delicious tonight?” “Marta, the house is really looking shabby. Could you please clean this place up, do the laundry and some ironing, go to the grocery store and set the sprinkler?” “Marta, Joe and I are heading out for our weekly date night. Have fun with Josiah. We’ll be back at 11! We love you.”

So, it was really funny about a month ago that we got an announcement from my son’s therapy center that the parent meeting that month was called, “Find Out How a Cultural Au Pair Can Help You.” I thought, “It’s my dream come true! Oh… and I also want to be a princess, and ride on a unicorn because that’s about as likely as affording a nanny.” I guess not a lot of parents were RSVPing for that one, so a follow up flier came out that said it was “surprisingly affordable.” Hmm. Affordable like having a second home and paying off an RV and taking multiple vacations affordable? Excuse my cynicism.

But, we had a good laugh because we thought of good old Marta. And, how much better life could be if we had her. So, if there are any Marta’s out there who would like to nanny for room and board (as long as you cook it) and maybe $100 spending money a month, let me know. What we could offer in return is the love of a sweet little boy, rested parents who appreciate you, and the satisfaction of knowing that even though you just cleaned up the living room, Josiah’s toys will be right back out all over in about 20 minutes. You’ll never be bored! And, we won’t make you wear a uniform. Oh, but if you also know ABA therapy, that would be awesome!

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