iPad: The Apple of His Eye

Last April we got an iPad for Josiah. After reading about the iPad and watching some videos, I had a hunch that this would be something that Josiah would dig. He already loved buttons, electronics, music and anything that would make noise. Perhaps instead of “stimming” on those things, we could actually lean into those motivators so he could learn. Well, my $499 gamble has paid off big time.

I realized that I wrote about “Why We’re Getting an iPad” last March, but I’ve never really followed up to tell people what the results have been for Josiah. Well, I see nothing but potential, potential, potential! Just this morning, I stepped back and marveled at what he was able to do with this miracle of modern technology. Out of all of the apps that are loaded on there, he knows EXACTLY what he wants, what it looks like, how to get to it, and what to do with it once he gets there. There are not just a few choices, he has to be thoughtful, and my son can figure it out! Yes, he’s still very behind in his development–the preschool apps are most suited to his aptitude–but he’s learning!

Getting Coordinated

When we first got the iPad with its intuitive touch screen, Josiah first was mostly drawn to the piano app. He’s a big fan of keyboards. But with the primary proloquo2go app (think a totally pimped out voice-output version of PECS–picture exchange), he kind of had a hard time getting his little finger pointer coordinated to work with it. He wanted to use his fingernail, and it didn’t have the pressure to make the requests needed. But, his therapists worked with him for about 2 weeks on that, and then he took off with it.

I remember one particular day this summer when Josiah grabbed his iPad and went into our closet, sat in a little laundry basket we have in there, and played for a while. He came out knowing how to do the electronic puzzles all by himself. Before that day, I recall being shocked when he checked out the puzzle app and then took my finger and guided the puzzle pieces into the right places. He does know HOW to do it! I began to realize that both motivation and motor planning–not aptitude–were probably at the core of many of Josiah’s deficits. Then, when he figured that out, he has done nothing but excel with the iPad. Quite honestly, he mostly teaches himself on it through exploring.

Goodbye Velcro Pictures

His therapists began to see that he really was taking to the iPad. So they decided to ditch the velcro book and laminated pictures and replace them with the iPad and proloquo2go for his requesting and communication. They obviously still continue to work on his verbal requesting, but speech is still so slow to come. But the iPad has helped us to learn about how Josiah thinks and what he likes more than we ever could have guessed. When he busts out in laughter while playing a certain game, or solicits my help because he wants the sound for one app turned off, it helps me KNOW HIM more. I so desperately have wanted to know what he’s thinking for so long.

I think the biggest challenge that we face is the education and therapy world catching up to the potential that the iPad can offer to children who have difficulty communicating. A couple of months ago, I had a parent meeting with Josiah’s therapists and they were ready to use the iPad for more than just requesting. I wholeheartedly agreed and said, “Yes! There are apps that I’ve downloaded, and you can see he knows how to do matching, he’s a whiz with the puzzles, he can learn more there how to identify letters and numbers. The electronic books can help him learn to read!”

Hurry Up Autism Therapy World–You’re Falling Behind

Now, I do realize that Josiah’s entire life cannot be lived on the iPad, but because of the iPad he is now doing real 15-piece puzzles when he “couldn’t” do 5-piece ones before, or would lose interest. But here we are, a couple of months later, and they are struggling to know how to start using the iPad more while making sure they can stick to the curriculum and the “towers” they must fill for federal standards. The “one-size-fits-most” approach and standardization can be good, but can also limit creativity. Who will lead the charge at the higher levels? Our kids are born with technology in their hands, so would someone declare that you can use the iPad to accomplish or spur some of the same skills that are currently tracked only when accomplished tactiley?

Our kids with autism don’t learn the same way as other kids do. We all know that. But that doesn’t mean they can’t learn to approach concepts that will translate to real life if we give them the right tools. Apple probably didn’t set out to revolutionize the world for kids with autism, but it sure is doing it. It’s fun to follow some of the older teens with autism on Facebook who are rocking out their lives now with the help of the iPad. And the iPad is cool! When they use it, it doesn’t look like they are lugging around some chunk of medical equipment. It’s helping one teen I know of make more friends and be more social in high school because she can show how funny and interesting and smart she really is–even though she can’t herself speak a word. I had to laugh when she wrote on Facebook that she got “shooshed” by the teacher because she used her proloquo2go app to “whisper” to a friend during class.

So, Josiah’s Christmas presents this year will probably look like iTunes gift cards so we can  buy more apps, instead of a lot of light up baby toys. My boy is 5 now, and he is going to crack his world more open thanks to the iPad. Now, if the rest of the world could catch up, and the people who develop autism curriculum would start making apps like mad fools. Get your current therapists to some conventions and show them how to implement this stuff. Time is a wasting! Link arms with the autism parents that are searching for the cutting-edge, and pioneer with us. Onward, ho!

Here’s Josiah in his early days with the iPad. The piano app kicked things off, and now he’s branched out.

How Things Look on Paper

Paper, paper everywhere. With Josiah’s autism diagnosis, between all of the insurance documents, daily report sheets from his therapy center, and multitude of forms to fill out, my counter always has paper on it. And file boxes and binders overflow with paper. I must plant some trees someday just to reconcile for the scads of paper this family has been responsible for using.

But there was one stapled report I haphazardly picked up before bed the other night, and I didn’t realize it was anything besides just another treatment plan for OT (Occupational Therapy) that was sent home. Instead, as my eyes darted across the page, I started to experience that feeling right above your diaphram when you get the wind knocked out of you. 

This was a more significant piece of paper. It was the re-evaluation report to monitor Josiah’s progress in OT. Statements like, “Josiah scored in the 1 percentile for his age of 4 years and 9 months” and “Josiah continues to present with significant sensory delays impacting his ability to maintain an optimal level of arousal for participation in functional tasks” turned on my waterworks. I HATE PAPER.

Man, and this was just OT. Have you seen how the kid moves and climbs? I kind of thought he was doing half-way decent in OT. I mean, I know Josiah has tons of developmental delays–those parent meetings where we get to see sheets with the colored bars and sky-high skill towers left largely unfilled prove that. But there’s something about hearing the therapists say, “He’s doing so well” and “He’s improved so much” and “He had a great day” that causes you to forget. It’s the paper that jolts you to reality. These are not the parent-teacher conferences and report cards that I had imagined for my little boy.

For whatever reason, a poor report makes me feel like I have failed somehow. Despite all of the work and prayers and vitamins and hyperbaric oxygen therapy sessions, I couldn’t perform well enough to grease the wheels of true progress for my boy. I’m also coming to realize that I have issues–and God is healing them up in me–but they started when I was a kid, and having a child with special needs has unearthed some of my unhealthy paradigms of control. Let’s talk some revelation that’s been coming to me…

When I was young, I went to a Christian grade school. This program was really big into publicizing each student’s level of achievement. We had “star charts” in our little cubicles that anyone could see as they went by, and if you got something like a B or above on a test, you’d get a small star to stick on your chart. If you scored 100% on a test, you’d get a big gold star. Anything less, you got an understated green dot on your chart, which meant, “Way to pass, but don’t get too excited about your bald little dot.” We also had weekly assemblies where students would get “congratulation slips” (again, if you got a B or better on a test) that you would go upfront to receive it with a handshake from the proud principal as if you were walking up to get your diploma or something.

I’m just now processing kind of how messed up that was–and I was one of the best students who had tons of “big” stars and walked home with armful of awards every semester! I wonder now how the kids who didn’t do so well felt, how stupid and less-than that they thought they were because they had more dots than stars. But as for me, I was always after those BIG stars.

I’m sure the people who created the program had good intentions. There are probably psychological studies that support the goal-setting and public reward system. But, recently I had a distant memory come to my mind that jolted me a little bit. My great aunt, an “old maid” who lived with us until she died when I was 15, always loved to help me with my school work. I was struggling with a math assignment and she really quizzed me so I would be ready for the test. I came home with the congratulation slip that showed I scored a 91%, and I proudly showed it to Auntie. She said, “Well don’t worry, you’ll do better next time.”

I don’t want to get all lay-on-the-therapy-couch over the top with this, but I believe that phrase, along with  this private school’s public reward system can partially be credited for my drive to set high goals for myself to achieve, and can partially be blamed for an unhealthy dose of perfectionism that I am having to deconstruct, brick by brick. In every area, good was not good enough; I had to work until it was best (by no prodding from my parents, mind you). I mean, really, what’s more important–marks on a paper, or a real life person with a unique personality and strengths and heart? A person that God said he knew even before he formed her in her mother’s womb (Jer. 1:5)? In our weakness, He is strong, right?

So, tonight I’m trying to recalibrate. I am doing the very best I can. Without thrusting my head in the sand to the facts, I cannot focus on Josiah’s weaknesses and deficits. He’s a real boy–not made from wood, nor defined by paper–who is delightful, who loves music, who is full of endless joy, and who has a destiny that will likely astound us all. Or, as another important piece of paper says,

Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is of good report—if anything is excellent or praiseworthy—think about such things. Philippians 4:8

… A little addition, thanks to someone who commented on the post. Perfect.

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.

Trapped, But Pursued

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

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

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

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

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

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

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

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

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

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

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

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

My Reminders of Love and Faithfulness

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

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

MY NECKLACES

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

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

My HOPE and JOSIAH necklaces

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

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

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

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

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

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

MY NOTE ON THE MIRROR

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

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

Jer. 31:16-17 on my mirror.

MY PROMISE NOTECARDS

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

Note card wheels by "Real Simple" with scripture.

THE SONG THAT REVIVES MY HEART

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

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

What are yours?

The Week, Or ‘Weak’, In Autism

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

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

GERBERDING NOW PRESIDENT OF MERCK VACCINES

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

"Get me those babies!"

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

MORE CONFLICTS OF INTEREST AT THE CDC

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

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

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

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

PEDIATRICIANS STILL STUCK

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

PRESIDENT OBAMA MAKES AN ‘INTERESTING’ CHOICE TO REPRESENT AUTISM

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

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

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

Merry Christmas?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Truly, Merry Christmas!

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

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