What a Ride!

What a ride I’ve been on these past three years! A crazy, topsy-turvy, loopy, up and down and all around, frightful, thrilling, out of control–but buckled in–ride. Almost two months ago to the day, my sista-friend and I decided to go to Valleyfair amusement park to celebrate the spiritual adventure we’ve been on in the past year. As we entered the amusement park–two 30-something moms brought together by autism, but bound together by God’s healing and grace–we decided to approach everything we did that day through a spiritual lens. It was a day that I will never forget.

It was supposed to rain that day, even talks of severe thunderstorms or a tornado watch. But, we decided to brave it anyway. Ominous clouds would come, and then they would go–a lot like life. My friend didn’t want to ease into the rides. We stepped through the gates and she said, “Let’s go on the Wild Thing, and we’ve gotta sit in the very first car–that’s the best way to experience it.” As we waited for the ride to start, I felt like a school girl, all nervous and giddy and a little scared. That thought creeps into your mind, “The only thing between me and death is this little strap and this bar across my lap… and if we get stopped on this ride at the top because of mechanical failure, I will die of a heart attack.” Alright, here we go. I couldn’t put my hands up the first time we rode the Wild Thing. Or the second. Or the third. Or the fourth. But I did on the fifth!

I put my arms up! On the Wild Thing with friend Michele at Valley Fair. Happy to say, there's 28 lbs. less of me now.

We literally did every single thrill ride in that park, including the Power Tower, and the newest “Steel Venom” ride. That one had me so scared-thrilled that I opened my mouth but I couldn’t even get a scream to come out! There is something so vulnerable about your feet dangling as you’re hanging 185 feet in the air.

On every big ride that we went on, I realized that the scariest part was that “moment”–anywhere from 3-10 seconds where you have climbed to the highest point and then been left suspended think about why you ever decided to get on this ride in the first place… and THEN they shoot you, drop you, jolt you through the rest of the ride. The “pause” is where the real fear can come in.

Remember how I decided to look at everything with a spiritual lens on this trip? I got to thinking about how often we become decisive that we are going to go on a spiritual adventure, we get buckled in, we’re excited for the unknown, we’re making the climb, and then we have a “moment” where fear grips us. On a roller coaster, you can’t get off, but you can get off the spiritual adventure because of fear. Rather than power through when we suddenly see the challenge we may have ahead, we want to go back, escape, retreat to a comfortable place (even though comfortable doesn’t mean safe anyway).

It reminds me a lot of Peter, who had extraordinary faith to step out of that boat and onto the water. He must’ve had a moment where he thought, “This is amazing! I’m doing it!” When his eyes were on Jesus, he was part of a miracle. When he looked around and saw the wind and the waves, he freaked out. He began to sink. How many times does that happen to us? We’re actually doing it when our eyes are on the Father and his promises, and then we get distracted by the sight of something scary, and we start to fail. It’s all fear’s fault. Fear is just faith in the wrong guy. That’s why “do not fear” is found 365 times in the Bible–one for each day!

Surprisingly, my most fearful moment at Valleyfair actually had to do with water. I really worked every angle to get out of this, but my friend wanted to go over to the water park. I kid you not that the scariest part of the day for me was being in my swimsuit with no towel, going up stairs and waiting in lines in front of all those people. I felt so exposed. I remember thinking that I NEVER would allow myself to feel this way again because of this weight that I had put on. Autism weight. Of all the things I had surrendered to God, I didn’t know how I could let go of the comfort of food. But that moment brought me to a final place of “ENOUGH”! I decided then and there that I will not allow myself to be a victim anymore, and I AM NOT POWERLESS!

In two months, I have lost just shy of 30 pounds on the HCG diet, and food no longer has a hold on me. It is amazing what has happened in my life since I surrendered that idol over to God. I will lose a total of 75 pounds by next September. That’s my goal, and I know I can do it now.

Josiah also had his 5th birthday, and I was okay. In one year, I have come very far on this ride. Looking back at the post on his 4th birthday reminded me of that. Truly, to God be the glory. To sista-friends, I am grateful. For giving God all of my “Plan Bs,” I am looking to be challenged, joy-filled, and thrilled–coming to a greater knowing that I can depend on his strong arm no matter what crazy twists come my way.

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At the Intersection of Autism Awareness Day and Good Friday

April 2, 2010. This is an interesting day. World Autism Awareness Day AND Good Friday. Perhaps it is an odd collision, but it’s caused me to pause to reflect on this intriguing eclipse. As they end up aligning together, it really so well captures the contrast I am faced with every day.

Whose voice in my life is louder? When two very weighty realities exist together for my family, which one am I most aware of? Autism, or the life and promises that Christ died to give (or gift) us?

Autism—like any sickness, problem, crisis or circumstance—is so boisterous. It regularly makes itself known and grabs hold of every single one of my senses. It get’s “all up in my business, in my grill,” so to speak. On the other hand, when it comes to things of the spirit, I have to choose to consciously make myself aware. I have to decide to enter in to His presence and realize He is with me always. I really wish He was louder. I could totally miss Him if I wasn’t listening for, looking for, seeking, chasing, loving Him.

I have learned something about myself. While I am an information junkie, a hard worker, and a person with a heart for justice, immersing myself in the quagmire of autism has the propensity to suffocate me. I can get really caught up in the drama quickly if I allow myself to. I have analyzed it from all angles—and there are a lot of angles. I know what I believe about autism—the evidence to support my chosen theories, and the reality of my experience. I have felt the weight of our story and the many, many stories of the others also in our same autism lifeboat adrift at sea. I’m not naïve. I’m not uneducated.

I agree, it can be pretty depressing that more isn’t happening to find the cause or fix the problem. And there are sides that get taken within the autism community itself, and the politics, the insurance woes, the vaccines, the role of the public schools, the environment, the food supply, the mercury fillings in my teeth. And that doesn’t even touch the very personal everyday life inside our homes and in our children’s therapy sessions and in the doctor’s (alternative or otherwise) office. You think our kids have attention problems… in that long list, how can we parents hardly focus on anything, let alone everything?

I was reading an incredible book called Strengthen Yourself in the Lord by Bill Johnson, and I thought this paragraph captured my dilemma so well. “Believers often fall into the trap of thinking they can find a solution by looking at a problem from every angle and letting it consume their world. But what happens is the affections of their hearts get drawn away from the Lord, to the point that they care more about the problem than giving Him what He deserves. They are letting other voices speak louder than His, and this is always irresponsible… This does not mean that we are not to give attention to problems—but we need to address them from God’s perspective.”

So on this Good Friday that happens to land at the same time as Autism Awareness Day, what is God’s perspective on the whole matter of autism, my passions, my son, my convictions, my reality?

Isaiah 53:4-5 (Amplified Bible)

Surely He has borne our griefs (sicknesses, weaknesses, and distresses) and carried our sorrows and pains [of punishment], yet we [ignorantly] considered Him stricken, smitten, and afflicted by God. But He was wounded for our transgressions, He was bruised for our guilt and iniquities; the chastisement [needful to obtain] peace and well-being FOR US was upon Him, and with the stripes [that wounded] Him we are healed and made whole.

On Good Friday, Jesus Christ was beaten beyond belief. I want to cry. And one of those stripes was for autism. And because of those stripes, our children and those of us who choose to trust God and believe what He said, are healed. But, beyond that, he gave everything for us so we could share in everything that was given to Him. Are we aware of his benefits more than we are aware of the problems?

Remember when VH1 used to show “pop-up videos”? As the video was going on, there would be a little thought bubble POP UP with some extended factoid or comment. What if we took in life that way? As the scene unfolds before us that may be frustrating and confusing, one of His promises POPS UP immediately. You can’t help but look at that. Its presence is speaking louder than what is going on in the background.

Psalm 103
O my soul, bless GOD, don’t forget a single blessing (not one of his benefits)!
He forgives your sins—every one.
He heals your diseases—every one.
He redeems you from hell—saves your life!
He crowns you with love and mercy—a paradise crown.
He wraps you in goodness—beauty eternal.
He renews your youth—you’re always young in his presence.
God makes everything come out right; he puts victims back on their feet…
As parents feel for their children, God feels for those who fear him.

How freeing is this? It does not mean I take myself out of the equation. No, I will still fight with everything I’ve got for my dear son, and for your kids too. God feels the same way for us! But it’s too big of a burden for any of us to carry ourselves. I think the voice I’m supposed to hear today loudly is what Paul says in Colossians 1:29, “To this end I labor, struggling with all his energy, which so powerfully works in me.”

Thank you, Jesus, for your sacrifice. Your great love. I’ve been sozo’d (made whole for spirit, soul and body–“sozo” is the Greek word for “saved,” so the next time you come across it in the Bible, let the whole meaning POP UP in your mind)!

Finally, I want to share this beautiful video on Good Friday. I’ve often heard this song and thought of my son, and now I think of Mary and what she was thinking about her son, Jesus, too.

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.

A brand new "fluffy" duck.

Duck after a bath.

Duck after a bath today.

Josiah hanging out with Duck, making phone calls.

Josiah hanging out with Duck, making phone calls.

Tumbling with Duck and Blanket.

Tumbling with Duck and Blanket.

Blanket auditioning for a role in a Christmas pageant?

Blanket auditioning for a role in a Christmas pageant?

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.

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!

Who’s the Fairest of Them All?

Who's that good-looking guy?

Who's that good-looking guy?

Josiah loves looking at himself in the mirror these days. He’s been enjoying seeing how his mouth moves, and also how other people’s mouths move, for that matter. He gets a big kick out of my husband’s mouth and stubbly chin, as he sticks his fingers in Joe’s mouth and just squeals with delight. Apparently, he was trying to stick his fingers in some of his peer’s mouths at therapy the other day too (not the most safe thing to do, I know).
Recent studies have discussed that kids with autism tend to look at people’s mouths more than into their eyes. There are even ways they say they can detect potential for autism earlier by seeing how babies track either with people’s eyes or with their mouths–far before the usual diagnosis age of two or three.
I remember looking so deeply into Josiah’s eyes when he was an infant, and really connecting, though. I don’t know when exactly that began to change. Have you ever gone back to the home videos and tried to “spot” the autism? Before 16 months, I could find none apparent. Maybe I just didn’t know what to look for then, but the camera showed an engaged little boy who was teasing and laughing and looking right at the camera.
 
At any rate, we have some things to *smile* about lately:
 
1. Josiah was Star of the Week recently at his autism therapy center. We were so proud of him! That little guy works really hard, and he’s been making some good gains lately. He seems to be engaging with his peers more and he loves to ask everybody for “tickles.”
2. My husband’s parents and nephew came to visit us a few weeks ago. Josiah hadn’t seen them since Thanksgiving, but he was really social with all of them from the first moments they walked in. It was great to see!
3. During the summer, Josiah’s therapy center has Friday afternoon “Fun in the Sun,” where they have different themes each week and invite family members to participate. Last year, Josiah had a really hard time with these, and it usually ended up that we left early and I was choking back tears on the way home. Well, a week ago, they had community helpers day and there was an ambulance and fire truck there. Josiah was exploring them thoroughly. Sure he gets a little more excited about the details of chrome hubcaps than hearing the sirens, but he was into it. It’s good to compare back to one year ago sometimes, and when progress seems painfully slow, remember how far he’s come.
4. The pooping problem seems to be solved! We went through quite a long time of constipation, and were having to give enemas. It was awful. Well, because I know my other autism mommies can identify with me on this one, I feel compelled to give a poop update. Josiah is now going every day or every other day, and they’re looking good! His DAN doc was glad to see that his tests are showing no more malabsorbtion of food, any yeast issues are almost under control, and his gut is healing!
5. Josiah is doing so much better feeding himself. It took him quite a long time to be able to scoop up food on a spoon and get it to his mouth. He’s got the mashed potatoes mastered, so we’re starting to work on some trickier stuff.
Sometimes it’s good to reflect. To compare former to present, or to look at your reflection in the mirror and smile like Josiah, especially if you haven’t seen your own smile enough lately.
A cheerful heart brings a smile to your face; a sad heart makes it hard to get through the day.” Proverbs 15:3

In a bit of a ‘jam’

Josiah has been seeking a bit of “deep pressure” lately, as his therapist explains. He’s been trying to squeeze into some pretty small places, and he likes to sit behind us in a chair and pull us close to “crush” him a little. Temple Grandin noted how when cattle were put into a tight chute, they became calm almost immediately. For people with autism, there’s something with sensory processing that’s a bit off, and deep pressure has a similar calming affect. In fact, Grandin designed a “hug box” squeeze machine that looks an awful lot like a chute for cattle in case you don’t have someone to squeeze you, or if you get overstimulated by human touch.

At any rate, it’s pretty darn cute and hilarious how many items Josiah has tried to squeeze into lately, and I have them documented right here. Whatever helps! He’s been doing really well the last couple of weeks, and his visual stimming is way down, so bring on the deep pressure! I’ve got tons of hugs, and a little visit to the storage aisle at Target is cheaper than buying toys. I have also learned that I can’t keep folded clothes sitting in a laundry basket for long because Josiah will toss them out and get in the basket.

Although, I had to draw the line when he tried to squeeze in between the fridge and the wall. And, last night in the bath he grabbed the small plastic bowl that I use to wash his hair off and tried to sit in that! So, he may have a little something to learn about the actual size of his hiney–otherwise, he may be able to find employment as a contortionist in the circus if he keeps working on it.

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