RPM: Accelerate Education for Non-Verbal Kids

“Our hope is that we can get these students to sit still long enough to do something productive like perhaps crush cans or shred paper.” Those words felt like a sledgehammer to my face, and I regretted that I had stumbled onto the wrong session.

This past January I was attending an autism seminar and was drawn to the breakout called “Activities for Non-verbal Students,” and because Josiah was not yet speaking, I thought I could benefit from learning some tips of interaction. I got just a few minutes into the session and realized the marketing blurb didn’t explain the targeted audience for this session very well. It was really more about high-school-aged kids with autism that were still non-verbal, and was facilitated by teachers of a local school district who worked with them.

I got that hot, flushed feeling that goes all the way from the top of your head down your back as they showed videos of these overgrown children screeching, rocking, and doing “productive” things like taking turns lifting weighted tupperware boxes over their heads. The well-meaning educators talked at length at how their day consisted of regulating behaviors. I got teleported 10 years into the future and I couldn’t bear even the thought that my son would ever have to be there–being managed, not educated.

I Think, Therefore I Am

The world we live in is a verbal world, and yet 40% of kids with autism will never speak. The ones that do speak seem to make their way in school alright with some help from aids, but the non-verbal ones are seemingly unreachable and unable to learn alongside everyone else beyond rudimentary skills. I pray and believe that my son will speak one day. But a couple of months ago when the three-year psychiatric evaluation came back around for insurance purposes, I watched in agony as the psychologist could not even test Josiah. Josiah wouldn’t give him the time of day or any indication that he was even comprehending a thing the guy was asking. Josiah sat in the trash can, inattentive. This society does not know how the autistic brain works. They craft assumptions. They assume a non-verbal child with autism is less intelligent than one that speaks, and that not only the expressive language is lacking but that the receptive language is scrambled.

I may be making sweeping generalizations by saying those things, but I’m going to make another sweeping generalization: these pre-verbal autstic kids don’t have a comprehension problem. They have an output issue. Most of the therapies out there don’t penetrate into the treasure trove of intellect that these people have but have not been able to express properly. The Rapid Prompting Method does. I can say that now with confidence because Josiah and I just spent four days in Green Bay, Wisc. learning how to do it, and immediately Josiah was able to express what he already knew and what he was able to be taught. It’s simple to do, yet profound in its effectiveness. I was flooded with hope.

I was first introduced to the Rapid Prompting Method by watching the HBO documentary “A Mother’s Courage.” In the documentary we meet a determined firecracker of a mother who came up with the method for her own child and is now teaching it to others–leave it to a mother to pioneer a way to bust through convention for her kid! Her name is Soma, and her son’s name is Tito, and you can learn all about their story here and even get the book on the method. It was inspiring to watch this method in action, but you always wonder if it would really work for your child, and how would you really access it anyway? This center and Soma were in Texas, and they only take kids older than 7.

Some Things I Now Know for Sure

My Googling fingers went to work and BINGO! Erika Anderson who has apprenticed under Soma for three years moved back to Green Bay to open a center there. Only 4 hours from the Twin Cities, I thought I could do that! She offered a 4-day “camp” consisting of two 2-hour RPM sessions a day, and she was taking kids as young as 5. RPM also is helpful for those who are verbal and need a little more help expressing themselves. I found some people from online searches that had done RPM and got glowing recommendations, so I was off to Packerland.

Josiah learning through the Rapid Prompt Method

The first moment we got there, Erika, in a no-nonsense but incredibly warm way, ushered Josiah to a stark room with these simple tools: a table, two chairs, white paper, tape, a timer, #2 yellow pencils and stencil boards of numbers and letters. And they went to work as I observed. While the mechanics of the Rapid Prompting Method don’t need to be explained here, I will tell you the profound perspective shift that happened in ME as I saw my son learn about things like the Ice Age, Eskimos, vowels, spelling, addition, telling time and Christopher Columbus using RPM:

1. Josiah is intelligent and he is listening to everything we’re saying even when it looks like he’s dialed out. I learned that his primary way of learning is auditory, while I thought it was visual. Although he is in tune with his iPad and the pictures there, he is selectively visual. On the other hand, he is hearing and processing that which is being spoken. The teacher didn’t dumb anything down; she just spoke to him like he was a typical 5-year-old, and he responded correctly to comprehension about 85-90% of the time when choosing from a field of two answers.

2. He can learn and be educated at grade level. Josiah would normally be going into kindergarten this year, but he is nowhere near ready according to what’s been achieved in this 3 years at his autism therapy center using Applied Behavior Analysis (ABA)/Applied Verbal Behavior (AVB) therapy. I would imagine we’re more like two years away from being able to enter school. But Erika showed me how to teach Josiah from the book, What Your Kindergartner Needs to Know. Always assume normal, age typical intelligence and teach from that perspective, she encouraged. I was so excited about what Josiah already knew, and what he was able to learn. Immediately, it boosted the quality of the interactions that I have with Josiah.

3. I know enough now to be frustrated with a holy discontent. This method works for my son, in fact no matter what age the non-verbal autistic person is, Erika and Soma have yet to find a case where RPM hasn’t worked for them. It starts with making choices from two fields, moving to three, spelling by pointing at stencil boards until motor skills improve, and eventually to being able to express independent thoughts through writing or typing. To progress to that point unlocks the world of a non-verbal child by giving him a voice. But what to do with this? I can practice for 25-45 minute sessions with Josiah at home every day, but what about all the time he spends at his therapy center? He is learning wonderful things there, but he’s by no means being educated at grade level.

How do you get therapists on board with a technique that cannot be scored in the same way as ABA is on charts and graphs? It’s the same issue I’ve had with them really being able to implement the power of the iPad for learning. What about when Josiah goes to school? This is so innovative that getting conventional therapists, educators, and insurance companies to bite seems close to impossible. Homeschooling seems more feasible, but how to do that with our two-income household? Well, in the meantime, I’m wanting to bring Erika to the Twin Cities for a workshop. She’ll travel and work with 2-12 individuals and families for a reasonable price while parents, therapists and even the media can observe the technique and learn themselves. Please contact me if you would be interested.

4. Kids with special needs must know that you believe in them. Making sure that the running dialogue with your child is very positive and affirming while stretching them to do what they haven’t done before is key. Kids with autism can feel less valuable, have lower self-esteem, and become frustrated with a body that won’t do all that they wish it would. So, my encouragement for Josiah to excel and try hard while celebrating the tremendous effort he puts forward is going to intentionally increase. He hears it and appreciates it.

I am so proud of my son. It was certainly a journey where everything was new for him–staying in a hotel, swimming in those big pools, eating in a lot of restaurants, and learning in a whole different way. Aside from some sleeplessness and high-pitched vocalizations that hurt my pride more than anything, Josiah was a happy camper. The week we spent there is going to change so many things, and I am grateful.

Be alert, be present. I’m about to do something brand-new.
It’s bursting out! Don’t you see it?
There it is! I’m making a road through the desert,
rivers in the badlands. Isaiah 43:19

A TYPE of Speaking

Once I knew only darkness and stillness… my life was without past or future… but a little word from the fingers of another fell into my hand that clutched at emptiness, and my heart leaped to the rapture of living.–Helen Keller

A couple of months ago, I had a revelation.

Josiah with his trusty iPad!

While wrestling with the fact that my beautiful little boy is still “pre-verbal” at 5 1/2, I recognized potential existed beyond the breakthrough of words. He IS in there, whether words ever exit through his lips or not. And he’s more aware of everything around him than I know.

I’ve wanted to believe he was, but in his silence or intelligible noises, at times I’ve forgotten. And doubted. And been less expressive back to him myself because I sometimes lose motivation to “chat” when it’s one way.

Somewhere while looking for clues of what Josiah comprehends within the quagmire of “expressive” and “receptive” language charts and graphs, or labeling stuff by tapping on a picture square, a chunk of optimism fell off my heart. I never thought with all the early intervention and everything we’ve thrown into this guy that we would be HERE. Less spoken words than ever, and he’s almost 6-years-old. Without words, his true intelligence is missed and misunderstood by those of us out here that don’t know how to mine for it. But oh, he has a light in his eyes and is full of joy!

When so much time, money and effort all of these years has gone into unearthing the holy grail of “progress” in my mind–“Can he TALK?”–I’ve been prompted to change my perspective of what I truly need for him. “Can he learn to communicate?” Not just “I want swing” or “I want donut” by pointing to talking pictures on his iPad. But tell us what he’s THINKING. What he loves. What he’s curious about. Or just simply in this crazy autism world of asking him the “what is it”s, I want him to be able to ask me “Why?” about something. Anything.

I watched the HBO documentary A Mother’s Courage a couple of months ago, and it ignited a new fire in me to help unlock my son’s world. (You can Netflix it if you haven’t seen it.) It featured something call the “Rapid Prompt Method,” and kids who everyone thought couldn’t learn or had very immature minds because they couldn’t talk were showing everyone what they were made of . Even the most “severe” were learning to choose and discuss topics and to write. And some were eventually learning at grade level and communicating their thoughts brilliantly. They were funny and they had a lot of things to say like the rest of us. You wouldn’t have known it from the outside that they were even listening.

The documentary “A Mother’s Courage” shows several scenes about the Rapid Prompt Method…

This news story features a kid who was “sorting silverware and doing first-grade work” the year before and just won the 8th grade science fair doing college-level chemistry after learning how to use a letter board to communicate!

Then, this documentary called “Wretches and Jabberers” came out and I hope to see it. In the trailer, you see that the adult autistic man answers the question, “So you’re saying all our assumptions about you are wrong?” He replies, “More like you than not.”

So, I’m trying yet another new thing this summer. I’m packing up Josiah for 4 days and driving 5 hours to Green Bay, WI where I found out that a lady that apprenticed under the developer of the Rapid Prompt Method has opened a therapy center. I’m willing to risk $460 to check it out. I’ve contacted three other people that have tried this with their children, and they all have said it has been well worth it.

I want to see if my boy who’s a whiz on the iPad could learn to type one day and rip down this word barrier. I want my son to LEARN, not just label. I want my son to COMMUNICATE, not just behave. Josiah attends a center-based therapy center 40 hours a week of the ABA/AVB, Physical Therapy, Speech Therapy variety. What if he learned how to spell, and he could be educated? What if he was able to gain confidence and interest in learning how to do something that made him feel valuable and like he had an outlet? Perhaps we need a little more creativity.

I’m thankful that Josiah has come so far. He’s really a delightful little boy. It’s time for him to learn how to communicate and to show off what he already knows. I continue to pray for God’s healing to release that tongue of his. In the meantime, I’m compelled to give this Rapid Prompt Method a go. I’ll let you know!

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.

Why Being a Great Multitasker Isn’t All That Good

I wrote a blog post for my church’s Marriage & Family blog about how awesome I am at multitasking, and how I’m learning that focus is more the way to go when it comes to our families.

Take a look!

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.

Why We’re Getting an iPad

I’ve got to get the word out. I think the Apple iPad is going to be an amazing tool for kids with autism, and we’re early adopters over at my place. We’ve placed our pre-order, and can’t wait to receive it on April 3!

When stirrings of the new iPad were floating around, an idea popped in my head. Hmmm. Josiah likes our iPod Touches. He seems to be a big fan of buttons and electronics. The touch screen is easy to grasp. So, if he’s drawn to the iPod, the bigger iPad could be great for him. Heck, I’ll even see if his ABA therapists would incorporate it into their therapy and we could shuffle it back and forth between therapy and home and see if we can’t give this kid a voice. They were all over it.

Here’s a video that gives a good overview of what an iPad does:

So, 5 reasons why to get an iPad for your child with autism:

1. It’s thin and lightweight=super portable and even COOL. Josiah appeared to be a good candidate for the DynaVox speech machine when they came and did an assessment. But for the life of me, I can’t figure out why these things cost $8,000. Is this the 1950s, and do they fill up an entire room? At first blush, I think the apps that are out there for the iPad (and those that will most certainly be developed) may give the 3″ thick and 10 lb. DynaVox a run for its money. The back and forth ease of the iPad between child and therapist, child and parent, home and school is going to be sweet.

2. It’s only $499–a one-time expense. Sure, I get that you would be hardpressed to find any insurance that would cover this expense–right now–but for all the money that flows like a river out of our household for various biomed, sensory items, therapies, and co-pays, $499 feels like a value to me for what we will get from the iPad.

3. There’s an app for that. The iPad will run all the downloadable apps currently available for the iPhone/iTouch, and there are many apps being developed specifically for the iPad as we speak. The sky is the limit for the apps that will be downloadable at the touch of a finger. Who has to worry about loading software on CDs? This is so much easier. From what I’ve observed, I believe Proloquo2go is going to be the foundational app to have on the iPad for Josiah. It’s kind of like your entire PECS functionality in an electronic version (see the video below), and you can also add your own pictures in. At $189, this app will likely to be the most expensive one we’ll ever buy, but it will be the most important. We can also load it on our iPod Touches for easy portability. Most apps cost $.00(free)-4.99. Go here, type in “autism” and you’ll see about 100 apps. Type in “preschool” and you’ll find about 500.

  • Some great apps I’ve found and am currently using:
    iCommunicate (simple visual schedules)
    LearnToTalk (Flashcards that talk and spell)
    Virtual wooden puzzles, shapes games

4. Internet, iTunes, photos, downloadable books, movies and songs–all accessible by touchscreen. The options are really endless when you control the content you wish to go get or load yourself. And for things like storytime, the child will be able to look at books and turn the virtual pages like you would with a real one. Penguin is currently developing interactive kids books and schoolbooks for the iPad that look incredible. Check it out!

5. You can get make it tougher with a good case. Now, I know the iPad will not be indestructible by little hands, but you can buy a great case to make it a little more rugged. I like this one: Hard Candy Street Case. It looks pretty protective, and you can take off the front cover and simply snap it to the back when the tablet is in use.

So, there you have it. My “case” for getting an iPad for your child with autism. It’s something that will grow with them, and will be helpful for little kids and older kids. We’re going to integrate it right into his therapy, get training that’s on the same page with his therapist and what is useful for home, and hopefully get Josiah more empowered to communicate, learn and get more speech. Once we get juicy Apple into our hot little hands, I’ll let you know how it goes!

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

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!

Who’s the Fairest of Them All?

Who's that good-looking guy?

Who's that good-looking guy?

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

In a bit of a ‘jam’

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

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

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

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