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?

Vote for Us in the Transitions Photo Contest

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

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

So, here’s what I’m asking you to do:

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

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

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

Making Sense of Numbers

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

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

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

Today’s standout numbers for me are:

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

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

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

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

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

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

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

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!

Who’s the Fairest of Them All?

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

Surprised by the Response to ‘Surprised By Autism’

Watch it online at surprisedbyautism.com

A couple of months ago, my husband (a television producer on a local suburban tv station) released a 30-minute documentary featuring our story so far with autism. It wasn’t an easy task he chose to take on. It was a labor of love, and he had some days he wanted to scrap the whole thing. “It’s hard to live autism at home, and then have it invade my work too. I just can’t get away from it,” he would say. But, I’m so glad he did because it’s helping people.

The Little Show that Could

The initial plan was that “Surprised By Autism” would air on his channel for a couple of months, and also on the metro access channel schedule periodically throughout the month, but in the meantime, it’s grown legs. I has shown on channels in some 30 or so states in the country now. It’s gotten nearly 850 views on YouTube. The DVD is in several libraries in the midwest, and in the Minneapolis Hennepin County Library system, my husband discovered that it had 24 holds on it! He mobilized to send them more copies stat.

“Surprised by Autism” has been featured on some autism blogs, in a few newspaper articles, and we know of at least one organization in our homestate in North Dakota that has showed it to its support and advocacy group, and requested handouts that they would give to everyone to point them to our www.surprisedbyautism.com website to watch it online. More handouts have been given out at an Autism Carnival Day in the St. Paul area. It’s also been used by college professors, and by students giving Masters’ presentations. We’ve heard of people who have passed it on to family and friends they know who are in the same boat.

I think our little documentary helps to fill a big hole, especially for parents that are still shell-shocked after receiving a diagnosis. Shows all about biomedical only give a little of the picture. Shows simply about what autism is feel so clinical. Shows about grief and the loss of dreams can leave the vibe of having shown “Schindler’s List” to a group of people in POW camps. Ouch. I think “Surprised By Autism” interviews enough professionals to get an idea that there are more options than just 3 hours of therapy a week, puts a face to autism that may not be as “extreme” but is real for the majority of families, and conveys that we parents can still have what so many people seem to unknowingly want to strip away from us: HOPE!

Please Do Get Your Hopes Up

When we first got the autism diagnosis, my husband and I attended a 4-week class through our county that was put on by the Autism Society of MN. While I appreciated the crash course in autism and the great desire to help parents navigate through it, it also left me at times more shell-shocked and terrified. On the first night, they showed a video that must have been from the early 1980s and came out of Canada that followed the grieving process of four families dealing with autism. As we got a big eyeful of what our little two-year-old was likely going to grow into, and how all of our dreams would go up in smoke, I just wanted to die.

The parents in this video had words on their lips that said, “We’re coping through this,” and a look in their eyes that said, “Please give me a pitchfork so I can fall on it.” I don’t think approaching a group of parents who are just finding out their kid has autism in this way is okay. The person who facilitated the group says she wants to “rip the bandaid off” first to get at reality and reveal the raw pain and loss of dreams, and then they can get on to some therapy and coping options.

In our society, why do professionals that deal with us feel like they have to put out a “I don’t want you to get your hopes up” sentiment. Why shouldn’t we get our hopes up? Tell me why it’s better to live defeated than to be propelled forward with hope that there is some way, some how that our children will improve and that we will have a hope for a future. Some other parents dealing with autism also can put out a similar feel at times, and they can be so sour towards those want to hope and keep trying for a better outcome. Please be a person who points to hope, who supports through the realities, and believes in the uniqueness of each child and their ability to rise above the limitations that we may be tempted to put on them.

Make a Choice Today

I remember reading Victor Frankl’s Man’s Search for Meaning when  I was in college where he recounted the experience of being in a Nazi concentration camp, waiting for someone to come liberate them. Those who gave up hope died in their spirit and ushered in an even quicker physical death. But there were those that even in the worst circumstances kept faith every day that someone would come liberate them, and it changed their attitudes so they could act and feel differently.

Frankl said, “What was really needed was a fundamental change in our attitude toward life. We had to learn ourselves and, furthermore, we had to teach the despairing men, that it did not really matter what we expected from life, but rather what life expected from us.”

If our “Surprised By Autism” show could do just a little of that for parents dealing with the shock of their lives, and give them a reason to mobilize and to always hope–choose to hope every day–we will have fulfilled that labor of love.

Hope deferred makes the heart sick,
       but a longing fulfilled is a tree of life. Prov. 13:12