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?

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You Got the Diagnosis–Now What?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Surprised By Autism” Debuts for Autism Month

Today is World Autism Awareness Day and April is autism awareness month. I’m excited about the elevated attention given to this cause at this time, and here are a few links I’d like to share with you, including our own documentary that my husband produced:

Jenny McCarthy’s third book was just released called Healing and Preventing Autism. It’s a collaboration with Dr. Kartzinel. My husband was able to get an advanced media copy and the last couple of weeks I’ve been able to read a bit of it. I highly recommend it! It’s the first book that I’ve seen that not only endorses various biomedical treatments and diets, but even gives you dosages, brands of recommended vitamins, and a protocol to follow.

The idea is that if you are waiting to get into a Defeat Autism Now! doctor, you can start some things on your own through this book and understand how to get the ball rolling. I’m a big Jenny fan, and she’s going to be making the rounds in the media this month. She’s a bulldog, and I love to see her take on the establishment. Check out her press schedule

Join a unified prayer effort to “Turn the Tide” on autism through the month of April by following the Children of Destiny printable prayer calendar.

Watch our family’s story called “Surprised By Autism,” which is airing on community channels in the Twin Cities area this month, and can be seen here through YouTube in three 10-minute parts. Settle in and take a peek! Our hope was that it would be a good introduction to options out there if you’re a new parent/grandparent facing an autism diagnosis, or that it will help bring awareness to the general public about autism.

Our “Surprised by Autism” show coming soon

I’m so proud of my husband. He’s a tv producer on a local cable channel, and he debuts a whole 30-minute show about autism next month. It focuses on our personal journey so far with our Josiah, and on getting out information to those early in their journey about what options are out there to help tackle autism. It’s information that we wish we would have had without endless hours on Google trying to get oriented to this new, strange life of this “cause unknown, lifelong, incurable” disorder. Tough words to be faced with for parents who feel like they’ve just been smucked upside the head. It’s time for hope. It’s time for education. It’s time to help others down a road that we have walked for a year-and-a-half. I’m looking forward to a sequel, and praying for a recovery story!

It wasn’t easy for Joe to work on this. Oftentimes, the last thing he wanted to do was live autism, and then be faced with autism at work too. But, let it be noted that I didn’t put him up to it! It was his idea and I’m excited to see it air during Autism Awareness Month. We’ll upload the whole thing on YouTube next month. In the meantime, Joe’s supervisor had us on her show this month to preview the documentary. Take a peek… (by the way, they say the camera adds 10 lbs. The question is, “Man, how many cameras are ON me?!?)

Angels Who Punch a Time Clock

LOOKING FOR HELP

A little over a year ago we found an oasis in the middle of what felt like a big, scary directionless desert. We had just come to understand that our little two year old had autism, and we had started some speech and occupational therapy for a few hours a week, but we knew Josiah would need more than that. With both of us working full time and quickly burning through our sick hours to take Josiah to and fro for therapy 20 minutes away, we honestly didn’t know what we were going to do. It was by “chance” that my husband stumbled upon a little center for kids on the autism spectrum, and it just happened to be about 10 minutes from where he worked.

I remember the day we toured this place. We hadn’t yet even had the “official” diagnosis, but we thought we better get on a waiting list because we heard about how hard it was to get services going. I walked through the roomy center and was impressed by the decorative touches, the cute little cubes that were set up with costumes, and play kitchens and libraries, and more toys than the local toy store. The people were so friendly and helpful. But it also felt heart-breaking and surreal.

A PLACE FOR JO JO

I had never imagined that I would be trying to find a place for my son to go because he had AUTISM. I was gripped by fear as I saw kids at every level of severity. How did I find myself here?, I wondered. From the time Josiah was three months old, we had the perfect set up for him. It was a great little day care five houses away from ours. The lady who ran it was like his second mom. He would be friends with those neighborhood kids. That’s the way it was supposed to be. Perfect.

Well, “perfect” would have to look like something else. We were so thankful that we were not only to get Josiah into the center right away, but that my husband’s insurance was one of the only ones in the state that covered these services–tens of thousands of dollars a year. Bless the lady who started this center for parents in our position! Please know that very few people have it come together for them as smoothly as this. We were able to get occupational therapy along with ABA therapy (Applied Verbal Behavior style), which has been proven to be very effective in teaching kids with autism. It could be a one-stop-shop. Our little two-year-old would start out as the youngest guy there, and he would soon be going for 40 hours a week.

ANGELS IN POD 10Josiah at the center's holiday party.

I just wanted to set up a little background first so you can understand the depth of our gratitude when faced with a difficult situation. We are so thankful for Josiah’s angels! His therapists work so hard everyday so my child can feel like he’s playing and having a blast, even though he’s being put through the paces. They developed a program specifically for their youngest clients and made a comfortable area called “POD 10” that was just for their five little ones under 4 or so. Josiah loves it.

I wonder if these therapists really knew that the occupation that they chose would mean so much, and would hold such a weighty purpose. Not only are they shaping the outcome for my son, but they are easing a great burden from us. These six women always have the biggest smiles on their faces and give their best energy to the kids every day. They even ask us how our days are, and seem genuinely interested in our family. They celebrate each new thing that Josiah has tried or mastered, and are really concerned if he’s not feeling well. They love a challenge. Our son lights up when he sees them, and they’re proud of him and are truly affectionate toward him. I like how they sometimes call him “Mister Cullen.”

This place has wonderful parents’ training groups, special parties for the kids and families, and the director is very present, helpful and available. I guess what I’m trying to say is that these ladies are our heroes. What a gift! I get a little nervous for the day that Josiah leaves the acceptance and unconditionally love he finds at this center, but I never take for granted the deposits he is receiving in his life every weekday by our angels who happen to punch a time clock.

The One-Year Anniversary

It’s amazing the power of a word. One year ago today (August 25) the word “autism” was breathed for the first time in our home. It hung in the air like a dense fog that took my breath away. I will never forget the scene… we had just put Josiah to bed and we returned to the kitchen table to visit with my husband’s mom and dad who had arrived a few hours earlier from North Dakota. They came out just a week after they had been out here to “get some car repairs” (but I think that was just the excuse to come back to talk with us face to face). We were laughing and telling stories when, suddenly, the tone changed.

Joe’s dad, courageously and graciously, told us that they didn’t want to alarm us but they just wanted us to promise them that we’d get this checked out. “It will all probably turn out fine,” he said. This feeling of flushing when through my body–like when the phone rings in the middle of the night. I wondered, “What could possibly be wrong?”  He continued, “We think something’s not quite right with Josiah. Compared to when we were here a couple of months ago, he didn’t seem to be as interested in us or in his cousin, and we had noticed little things before like how he was into wheels, was turning lights off and on, and was looking strangely at the fence… He hit his head on the floor last week and it didn’t even hurt him.”

THE “A” WORD

I remember my husband saying, “You mean you think it’s like autism?” Mom and Dad shook their heads.

“But, he claps and he has eye contact, and he’s not like that,” I said. “That’s a horrible sentence for life.” What I knew of autism was minimal, but like most moms, when the Parents magazine would come out I read about watching for the signs of autism, and I sure was glad my kid didn’t fit the criteria. And, I remembered when Josiah was just months old challenging his pediatrician wondering if he really needed all of these vaccines… what about what I read about autism? Well, the doc gave the pat answer, “Vaccines have save thousands of lives and any side effects are very rare.” So, I went forward with the vaccines pretty confident nothing would happen to us.

The next day after the table conversation, I promptly called Josiah’s daycare provider. Surely she would have told me if she was concerned about something. She said she kind of noticed he was behind other kids his age but that every kid developed at their own pace. It had been a bit harder to get his attention too lately, but it wasn’t a big concern for her yet.

Sure, we were first-time parents and didn’t have anything to compare things to, but the little concerns we had like why Josiah wasn’t “getting” the waving goodbye thing, and why he was suddenly fascinated with pulling little girls’ hair, and why he didn’t seem to be imitating my teaching of his body parts every bath night–they all seemed like things he’d grow into. The scariest thing we had to deal with at that point was that it took him until 17 months to walk, but once he got to it, we were relieved and on with life. Maybe he was just a late bloomer.

“PLEASE, LET IT JUST BE A DEVELOPMENTAL DELAY”

I remember being so scared by the uncertainty, and I had to fly out that week for a couple of days for business but just wanted to figure out what was going on get to a pediatrician for answers. We were in the pediatrician’s office within a week. He said, “Well, we could wait and see for six months…” I promptly said, “Or?” and he got us referred to a place to see if speech and OT therapy were needed. Thus began our long journey of testing and theories and agonizing days.

I don’t exaggerate when I say that literally within the next three weeks after the word “autism” was spoken at that table that our precious child regressed before our eyes–losing more words, losing eye contact, and not responding to his name. I had to put a blanket over Josiah and me to get him to even look at me. I was losing him and it absolutely terrified me. Still, we had no real answers. “Please, ANYTHING but autism,” I prayed.

“CAN WE GO ON? YES, WE MUST!”

Labor Day 2007 was a real low point. I so felt like I had been kicked in the gut over and over again that I physically could not stand up straight. I cried my eyes out into a bath towel. I had a feeling that life would never be the same again and as my husband and I struggled to catch our breath between tears, we wondered how we could go on. Maybe, just maybe, it was just a developmental delay or something less severe, we tried to assure each other. But, you know the rest of the story.

One year later. We were able to go on. We sifted through many bleak websites and books about autism and turned up some gems of hope to get us going in the right direction. Our son is improving through biomedical treatment and intense (ABA-Applied Verbal Behavior) therapy. and we really believe that he WILL succeed over the next few years and be ready for regular school. We believe he’ll have friends and a great sense of humore. Our faith has been tested to the limits with questions and doubts, but we still believe that God has a plan and loves us and our beautiful son. This year has brought out the best and the worst in us, but we are still standing.

In the midst of it all, our hearts have turned outward and we want to be able to help others somehow who find themselves in those early stages of this whole confusing ordeal. This post is really for you. Don’t give up hope. Do your research. Know you’re in for a long climb, but you can do this. You have to, and you can do all things through Christ who gives you strength! It will start getting a little easier. Through the fits and starts of adrenaline and action, you’ll learn to ride out the plateaus. You will find comfort in the fact that you’re not going through this alone.

Our Video: A World of Hope for Autism

Understanding. Solidarity. Empathy. Hope. Awareness. This past year, I have Googled my heart out to get a grasp on this world of autism, and it’s other parents that we don’t even know that have really been there for us through their videos and sites. I think so many shell-shocked moms and dads are just desperate to come across a word of hope for their kids, or at least a sense that they’re not in this alone.

Many nights, I’ve watched YouTube videos on autism and have been encouraged by stories of recovery. Or been moved to tears by videos people have posted about their child’s journey. Heartbreaking stuff about how their kids were well for the first year-and-a-half (like ours) and then something flipped. Heart rending stories about how parents don’t have the insurance coverage they need to get their kids help, and they don’t know where to turn. Stories that speak of the injustice of the “powers that be” whose greed and unwillingness to hear have put our children at risk from toxic vaccines and environmental pollutants that have made their way into almost everything.

That crazy world wide web has fostered authenticity and interconnectedness within groups of people like no other time in history. (Thanks, Al Gore, for “inventing” the internet!) You actually virtually “meet” strangers that you come to care about. The online autism community is vast, and courageous parents have gotten the momentum going for awareness about new biomedical treatments, gluten/dairy-free diets, emotional highs and lows, and what it means when your kid’s poo looks like…

Well, I saw a video that www.rhemashope.wordpress.com posted on the website “What Kind of World Do You Want” (seen here), and I was so moved by their family’s story that it inspired my husband and me to tell our story there too. Putting the video together was and going through all of those pictures of our little guy was kind of painful, but very healing at the same time. The thought kept coming to me, “God is faithful. He will see our boy through.”

You’re invited to view Josiah’s video right on the “What Kind of World Do You Want” site because each view donates four cents to Autism Speaks. Or, you can watch it below. I just hope our story can touch some lives like other people’s videos have touched ours.