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

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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.

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.