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It’s been a deep sorrow for me that Joseph and I don’t have real conversation. My questions are often ignored or answered as if I’d asked something else entirely. If I try to engage him in a conversation, I’ll usually get one- or two-word responses.  Fragments come out, or words out of order. I get confused as to what he’s trying to say.

Sometimes, frustrated, Joseph will burst out with, “Don’t talk to me! I don’t want to talk!” Having a mind that can’t organize words or concepts must make verbal self-expression very challenging.

A few years ago I brought up to John, our RDI Consultant, my sadness about the lack of conversation with Joseph. It’s another autism-based missed opportunity, I’ve felt — the chance to engage our hearts and minds via our words.

But John has told me that RDI addresses the conversational deficit. And guess what? At last, at last, we  have a strong enough foundation to get to work on it.

To start with, I’m not to ask Joseph those open-ended questions that parents are supposed to ask their children (have I mentioned that autism parenting is counter-intuitive?). Right now it’s too confusing for Joseph. I’m to ask more specific questions. Instead of, “What did you do at school today?” I ask, “Did you play on the blacktop or the playground today?” “What did you do there?” “Why?”

I’m to ask who, what, where, when and why questions. Not all at once. Not overwhelmingly so. Just enough to get Joseph used to the different ingredients of basic conversation.

This afternoon Blue Eyes asked Joseph, “Where did you just come from?” Joseph answered, “John’s house.” “What did you do there?” “We went swimming.” We are focusing on this sort of thing — Joseph does something and then reports on it in a way that is clear and understandable. We guide him with the basic ingredients of conversation.

Coincidentally (or not?), Joseph has recently gotten into telling stories — either made-up ones or stories from Blue Eyes’ and my childhood. It’s the perfect time to exercise the who-what-where-when-why concepts. If Joseph jumps in on a story without setting it up properly, I look confused. “Wait a minute. Who was this? Where were they?” Joseph has to backtrack and fill me in on the basics before continuing.

It’s exciting. I’m already seeing progress. My long-held dream of conversing deeply with my son is moving in the right direction. And the great thing is, Joseph doesn’t even know we’re working on this. It is happening for him in what appears to be a natural manner.

RDI is getting a lot of flak from our local funding agency. They lean toward Applied Behavioral Analysis, which works with kids in a much more rote way. The thing is, life is dynamic and ever changing, and learning rote ways of thinking, talking and behaving are not going to serve these kids in the long run. When I see Joseph getting along in his mainstream classroom — when I see his friends including him in their activities, even seeking him out — I am filled with admiration for my son and for the intervention that is making such a difference in his life.

Where autism is concerned, there is no such thing as small talk. Small talk is big talk, and big talk is even bigger talk.

I could say a lot more on this, but for now I (who) am signing off (what). It’s late (when) and I’m tired because it’s been a long day (why). Off to bed (where) with me.

Nice talkin’ to ya.

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I had a Skype session yesterday with John, our RDI consultant. I took notes as he spoke about the playdates Joseph’s been participating in. Somehow the subject of weirdness came up, so I jumped in with something that’s been bothering me lately:

Joseph likes to be weird.

Howling on the playground

We’ll be walking up to his classroom in the morning, students of all ages around us hurrying along, and Joseph will suddenly stop, look up at a pretend moon, and howl.

At full volume.

Kids turn and look.

I’ll whisper, “Joseph! If you do things like that, the kids will think you’re weird. They won’t want to be your friend!”

Joseph will laugh delightedly and repeat, sing-song like, “I’m weird. I’m weird.”

John listens to my concern, his face imperturbable. Then he tells me that, when it’s a full moon, he goes into his backyard and howls at it. John lives in a suburban neighborhood, and all his neighbors recognize his howls. His wife hates it, his children love it, and every full moon he does it.

Joseph is just weird, he tells me. He sees him growing into a teenager who is funny and smart, who can be really goofy with his friends.

All along I thought this was autism. This ability to happily be different from other people — to try, even, to get them to think he’s weird. John’ says it’s not autism. It’s Joseph’s personality — autism or not.

This is just another reason that I love RDI. Having someone to check in with on the little things and the big things. Getting an expert’s perspective — especially an expert who knows our boy, and our family, really well.

Not just any expert, either. An expert on RDI, which stands for Relationships Development Intervention, and which focuses on development in dynamic real life — not in some contrived, forced situation, like another popular intervention.

For years I’ve been coveting the RDI stage where Joseph could be in a dyad, playing with another child under John’s tutelage. We had to get all the necessary developmental skills in place before Joseph could qualify — how do you play with another person if you don’t understand how to co-coordinate an activity, for instance — and now we’re finally there! There are many stages to a dyad, and John is positive about how well Joseph is progressing through them.

Some people take their kid off of gluten and the autism goes away. Some people use homeopathy, or glutathione shots, or oxygen chambers, or another of the million and one cures for autism — and suddenly they have a neurotypical kid. That hasn’t been our path. A lot of the things we’ve tried have helped to some extent, but on our long, slow route to helping Joseph achieve his full potential, RDI stands head and shoulders above the rest.

The closest analogy I can give for RDI is Annie Sullivan, Helen Keller’s teacher.  Like Annie, RDI comes right into your life, reaches into a child’s isolated world and gives him/her meaning, connection, and a way to grow.

To stretch this analogy just a little further, RDI actually coaches parents into being their child’s Annie Sullivan. The intervention is parent-based because the parent-child relationship is, or should be, the strongest relationship there is.

This can be frustrating. In many ways I would  prefer to let our RDI consultant, John, do the Annie Sullivan thing. The ego wants the easy way out, after all.

But the soul seeks to grow. Despite all the hard work and the many times I want to give up, I am coming to understand much from RDI about autism and how to help Joseph with his particular challenges. For this I am eternally grateful.

mud hat

I love that John thinks about the teenager Joseph will grow to be. That he sees him having friends in this future time. He coaches us to raise Joseph to be a good husband someday, and I love that he doesn’t limit Joseph from friends and marriage because of autism.

I’m starting to delight in my son’s weirdness. It’s an ability to think and behave outside the box. It’s creative and silly and fun. Like John, I’m enlarging my vision to see Joseph’s future friends admiring his weirdness, enjoying being crazy and funny together. And maybe, further out, a wife and children with whom he can be his own howling self.

Joseph is really into animals, so last week we took the loooong drive  to San Diego to show him one of the world’s biggest, and best, zoos.

The idea alone was so exciting for him that, a few days before our trip began, he started waking up at 4am just thinking about it. Now, Joseph is not the most quiet of children, so we all started waking up at 4am. Blue Eyes and I were therefore just as eager for the departure date as Joseph. 🙂

We had three days in San Diego, and the first day at the zoo was really fun. Joseph decided that the first animal we had to see were the hippos, because they were most playful early in the morning. From there we saw many wondrous things, and learned a lot as we went.

Before the trip, Joseph had made the occasional comment that it would be too crowded and noisy for him, and I wondered if it would be. But it’s a quiet month at the zoo and Joseph did GREAT. We stayed from opening ’til closing, Joseph made a friend at the crocodile exhibit, and we all had a terrific day.

RDI has a concept they call Productive Uncertainty. If you can envision a graph that is a hill, then Productive Uncertainty is the part of the hill that rises up to the peak. That first visit to the zoo was new for Joseph, but the uncertainty was productive: fun, pleasant, and educational. It helped Joseph to feel competent.

We gave Joseph the choice of another day at the zoo so, after doing other things on our 2nd day in San Diego, our 3rd day saw us back at the zoo. But this time it was different.

From the opening minutes, Joseph started doing odd, jerky, movements accompanied by flapping and singing. I call it his “weird dance,” and indeed it does look, and sound, weird. I got on his case, snapping at him to stand normally and keep his arms at his side. All morning we tussled about it.

He also chewed like mad. His shirt collar and sleeves were soaked with his saliva. I kept jerking things out of his mouth, my frustration mounting.

Looking back — which is always the best vantage point — I can see that Joseph was, for whatever reason, stressed and anxious. But even with all that weird dancing and chewing, neither Blue Eyes nor I thought about stopping and regrouping.

When we sat down for lunch, Joseph lost it big-time. He screamed and screamed, sobbed and moaned, said over and over that he just wanted to sit inside the car. I held him for about 15 minutes of this, aware but not really of curious onlookers, while Blue Eyes and I tried to decide what to do.

I’m learning that Joseph knows best how to calm himself down (“self-regulate” is what we say in the trade), so we finally gathered up our food and ate lunch in the car. What should we do? Blue Eyes and I asked each other. We’d spent a lot of money to go to the zoo and we’d like to be there. Besides that, we’d like it to end up as a positive memory for Joseph. But Joseph insisted he wanted to go back to the hotel. We were confused.

While Joseph settled down and ate, I closed my eyes and asked for help. The Productive Uncertainty graph popped into my mind, and I realized we’d gone past the productive peak of the graph, moving downward to the point of  Threat and Unproductive Uncertainty.

It looked like it was all downhill from there, but I shared my understanding with Blue Eyes and wondered aloud if we could get back to Productive Uncertainty.

I am grateful that Joseph has a keen sense of humor. We probably spent an hour in the car, and then we started teasing and joking with Joseph, who laughed and laughed. We took that happy energy and swept him out of the car with the promise that we’d simply watch the sea lion show and then leave for the hotel.

After laughing through the show, Joseph wanted one more trip on the Sky Tram. Then he had to see the petting zoo one more time, and one thing led to another. It was late in the day when we left the zoo, with smiles and happy memories all around.

RDI is big on reflection and, looking back at this whole experience, I see that I blew it by not catching the signs that Joseph wasn’t doing well. In fact, I made it worse by being on his case. But, on the positive side, we made it through a breakdown — and a large one, at that. We shifted from Unproductive Uncertainty to Productive Uncertainty, leaving us all feeling more competent, resilient, and a little wiser as well.

Lastly, I have in the past considered myself to be unintuitive, but my view is shifting. When I asked for help and got the image of the graph in my mind, I realized that intuition is simply having the door open. Most of us go around without asking for help, and it seems to me now that there are angels and guides who can’t WAIT to help. But they won’t come uninvited; we need to ask.

My prayer is to keep that door open all the time. Especially when Unproductive Uncertainty looms.

Earlier this week, I picked Joseph up from school and we did the hour’s drive to the RDI consultant’s office. John had set up his neurotypical boys to interact with Joseph in a playgroup-like setting.

(Some kids get picked up from school and taken to soccer practice or music practice. In my mind, I refer to our after-school trips as “normal practice.” But I digress.)

We go into the office and the first thing John wants the kids to do is play a board game together. Now, Joseph is not a board game player. There is something about board games that he doesn’t get. So Joseph looks at the game and whines, “I don’t like board games. They’re too hard!”

It’s Chutes and Ladders, one of the easiest games in the world. I pull John aside and say,  “Joseph doesn’t do well with board games.” I’ve been cogitating on his answer ever since. He said:

“I don’t want this to be another thing that’s left out.”

When we have babies, a lot of things get left out: nights out, adult conversations, a full night’s sleep, sex — that sort of thing. But eventually things get more or less normalized and there isn’t such deprivation.

Not so with autism. Things get left out. Forever.

Recently some friends invited us to their ongoing couples’ group. They meet every other Thursday night. They bring the kids, set them up in another room with their homework and a video, and go do their thing separately. “Come along,” they said. “It’ll be great to have you.”

Sure. Take Joseph to an unfamiliar environment, set him up in a room with kids he doesn’t know, and leave him there to enjoy himself. Ha! Only in our dreams.

Another thing left out.

Blue Eyes is a builder. He works with a friend whose 3-year old boy recently threw a long tantrum because he couldn’t go to work with his dad to build with him. Blue Eyes thinks the time is near when they’ll have the kid come for a couple of hours to bang some nails and “help out.”

Blue Eyes has tried to interest Joseph in building, but Joseph feels incompetent and uncomfortable, and he shows no interest. It’s yet another place where Blue Eyes and Joseph don’t connect.

Another thing left out.

Recently we had extended family over. There were around fifteen people at our house. Joseph spent a large part of the time off by himself, telling me, “There are too many people here. It makes me nervous!”

It’s such a battle getting him comfortable in group settings that we’re considering not going to Thanksgiving gatherings any more. We’re not sure it’s worth the struggle.

Another thing left out.

The biggest thing that’s left out, in my view, is deep conversation. I want to talk with my kid about his place in our family history; I want to dialog with him about spirituality in all its nuances; I want to ask him questions about his inner life and get answers that mean something. I want him to ask me deep, interested questions. I want to teach Joseph some of the wisdom I’ve gleaned; I want him to teach me from his youthful understanding.

I want what conversations like these lead to: both parties coming up with a change in perspective, a deeper understanding of each other and the topic of discussion.  I want it, I want it, I want it.

Sigh. Another thing left out.

I know things can get better. We thought we might have to leave out living a normal life at all when Joseph was so terrified of dogs. Dogs are everywhere, and life was becoming one horrifying incident after another. But now dogs are a non-issue. So things can, and do, change. But they probably won’t change too much.

It is the way it is. I can’t fix it and I can’t change it. I am feeling sad about it. I am allowing that sorrow to fill my heart and I am sharing it with the Divine Mother, who knows all sorrows.

I recently heard a song that said God prefers the honest cry of a broken heart to a thousand hallelujahs.

Well, with the numbers of autistic children on the rise, God must be hearing some real honest cries from a lot of broken hearts.

God alone knows, but maybe that’s one of the reasons we’re given children with autism.

Here’s why I love Relationship Development Intervention (RDI). John, our RDI Consultant, came over last week. We sat down at the table and I  presented the challenge of Joseph’s anxiety to him. He asked some questions about it and then said he wanted to see the anxiety for himself.

So I removed myself from the premises, sneaking outside to water the garden. John sauntered over to Joseph, who was busy playing the drums, and asked him, “Where’s your mom?”

Immediately Joseph put down the drumsticks, looked around the room and hollered, “MOM?” When I didn’t answer, he went from room to room looking for me. He turned to John and said, “Maybe she’s taken Checkers (the dog) for a walk.”

We interrupt this story to give you John’s interpretation of what happened. Seems to be pretty normal stuff, right? Just a kid looking for his mom, right?

That’s just the point: it’s pretty normal!

1. He called for me. It took YEARS to get him to call for me.

2. He looked for me. Ditto the above statement.

3. He came up with a theory as to where I was. This is good. Very good. The kid is thinking outside the box.

4. He wanted to know where  I was. John pointed out that some of his clients couldn’t care less where their mothers are. They are complete in their world of one.

A different perspective from the one I had in my last post.

Eventually, Joseph did start to show anxiety. John helped him through it, taking him outside to look for me — and, voila, finding me.

Afterward, we sat down at the table again. John recommended that I practice disappearing from Joseph’s sight. He suggested we play hide and seek, where I  really hide well so that I’m gone for a good while and Joseph learns how to truly look for me. He also suggested going to public places with one other adult and me leaving them to use the bathroom for an extended period of time. When Joseph shows anxiety, the other adult can keep feeding him the information that I’m simply in the bathroom.

Practice, practice, practice, John says. Slowly, but surely, Joseph will learn.

Oh, I love RDI. However do people cope without knowledgeable support when they are dealing with autism? If you don’t have enough support with  your autistic child, please move heaven and earth to get it. Your kid needs to know you won’t give up on him or her, and you need to know you have someone in your corner, coaching you and rooting for you both.

 

You know that river that runs through Egypt — the one that we all jump into and swim around in, now and then?

DeNile — that’s the one!

I have great respect for denial.  I also seem to have a fondness for swimming in it. Today we met with our new RDI consultant, and I discovered that I’d been floating in that river yet again.

But before I explain, let me take you back a couple of weeks.

Two weeks ago, our amazing occupational therapist gave us a dozen activities to do with Joseph — activities that focus on bilateral (using both hands in a way that they coordinate with each other) movement, and movement that crosses the midline. We’ve been conscientiously doing them almost every day.

Suddenly Joseph became more competent in swimming, drawing and numbers. He started spelling out words on his own. When we drove in the car, he insisted that I roll the windows down so that he could shout, “Hi!” “Hello there!” to passersby — and laugh merrily when they responded. So it’s been a fun two weeks.

On Monday Joseph started insisting that he was ready for kindergarten. I think he is noticing that, while he is almost 6, the other kids in preschool are 3, 4, and 41/2.

Well, it just so happened that, on Tuesday morning, I had an appointment scheduled with the principal/special needs coordinator of our local elementary school. Among other things, I mentioned Joseph’s academic progress and his desire to go to kindergarten.

She was all over it. “Let’s get him in!” she said enthusiastically. “No time like the present!”

On Friday, we are going to visit one kindergarten class for an hour. We’ll visit another one next week sometime.

So I’ve been feeling pretty good about this — feeling that Joseph is ready and willing, feeling that it would work.

Then John came. He is our RDI consultant.

He is new (to us). Kelli, our former beloved RDI consultant, has moved on to different work. So John went to Joseph’s preschool today and observed for 1.5 hours. He came over late this afternoon, and we talked.

He couldn’t say too much about the improvement-needed areas with Joseph in the vicinity, but he did manage to get in one concept: Joseph is not presently other-minded.

Other-mindedness. Ahhhhh.

Other-mindedness is one of the biggest deficits in autism. When someone doesn’t have it, it shows up as an inability to borrow someone else’s perspective, to understand that other people think differently from oneself. It is an inability to consider what someone else might be thinking.

Other-mindedness is the foundation of a good friendship or a good marriage. Or maybe even a good life.

In other words, it is a big one.

Kids start developing other-mindedness around the age of 1 or 2. John talked about working with a 12 year-old who most people couldn’t even tell was on the spectrum. John and this kid were running to a window to wash it together when John fell (on purpose) and began moaning terribly about his hurt knee.

The kid looked back and asked, “Are you all right?” Then he ran the rest of the way to the window and began cleaning it while John lay on the floor, moaning in pain. His mother, watching through a see-through mirror, couldn’t believe it.

It’s a foundational thing, a fundamental building block. Without it, we are painfully lost in most social situations.

Jesus showed very advanced other-mindedness in Matthew 12:25: And knowing their thoughts Jesus said to them, “Any kingdom divided against itself is laid waste; and any city or house divided against itself will not stand [emphasis mine].

I am not grieving about this deficit. Nor am I even beating myself up about not noticing it (consciously) before. Denial, after all, has its place.

I just feel extremely grateful that it has been pointed out to us and that we have the tools and support to get it going. We are in good hands with John.

John had Blue Eyes and me running around the living room with him as he tossed a ball to one or the other of us. We never knew who would get it and had to watch carefully to see what he was thinking.

I can see that cultivating other-mindedness is going to be a tremendous step forward for Joseph. I am excited to begin.

I can also see that, though Joseph is right on target academically, he still needs some help socially. Maybe it’s not time for kindergarten. Those kids are really sophisticated socially.

I don’t know. But I’m getting used to not knowing. It’s almost getting to be a comfortable place to hang out.

One of our earlier RDI objectives was about learning from past experiences and applying those lessons to future ones. If I was to do that  in this situation, I would realize that the right things (working on bilateral movements, a new RDI consultant) have come along at the right time. All I need to do is to stay open, to watch for the signs, to listen for the whispers.

It’s worked before, and it’ll work now. God is guiding me no matter where I am or what I’m doing. He’s there with me, always. He is in my corner.

Even when I’m just floating comfortably in DeNile.

A tan, a memory, a view, a photo: There are many great things that you take home from a vacation. One of the most powerful gifts we received on our trip was a new perspective.

You see, as we were packing up for Maui we told Joseph that, since we were doing only carry-on luggage, he could  bring just two small toys along. He chose his two newest trains, procured just days before we’d left.

And that was ok. On the flight over, those trains provided some amount of entertainment for him — and later, when we’d settled in at our friends’ house,  they brought him some sense of familiarity and he played with them here and there.

Now, as I have mentioned in previous posts, Joseph is a trainiac. He loves all things trains, and his favorite pastime is to lay out those wooden train tracks and make the trains go on them. It’s basically his default behavior. So it was a big deal, for all of us, that he didn’t have enough train stuff around to occupy his attention for long.

It was, in fact, a great thing. Without trains exercising their massive tyranny over his mind, Joseph started to use his imagination in other ways. For instance, one evening he assigned Blue Eyes and me the role of the little kids at his preschool. As our teacher, he put us down for nap, came in to check on us and then, when it was time, he roused us and got us up out of bed.

There were many other ways where he was simply more present and available to us than he’d been in years.

Then it happened. A wonderful friend and her child, who live in Maui, came over to visit. My friend thoughtfully brought some toys to leave with us while we were there. Why didn’t I tell her not to bring trains? I guess because I didn’t think that her kid — a girl — would be into them. But — sigh — she was, and so when they left, we had about 8 trains sitting on our floor.

I think that sometimes Divine Mother makes things really obvious and exaggerated, so that we can be sure to get the point. In this case, we got to see how the presence of those trains deeply changed the fiber of our interactions with Joseph. Suddenly there were these huge obstacles between him and us; things we had to peer around, compete with, and play second fiddle to.

And there was no doubt about it: in the final score the trains won, and we lost.

I hear that Thomas the Train very specifically markets their products to autistic children. If this is true they are, unfortunately, brilliant at it.

A number of years ago, when we first started RDI, we had packed up all of those  blasted trains and put them away in a crate up on a shelf. We took them down only occasionally, because it was obviously an obsession for Joseph. But as time went by, we got lazy and the trains become more and more available to him. We didn’t really notice when the obsession started taking him over.

However, the difference between Joseph without trains and Joseph with trains during our trip created too much of a contrast for us to ignore.

So today we met with our RDI consultant while Joseph was in preschool. We explained the whole train thing. We talked about wanting to pack them all up again, free Joseph from his obsession. We wanted to take all his train books away, as well. I explained that my visual image of this is like removing cigarettes from him — that’s the kind of harm these things are inflicting on Joseph.

Our consultant was with us 100%.  Do it. Do it now, she told us. Not slowly or gradually, but in one fell swoop. The two of you should sit down with him this afternoon (presenting a united front), and explain why you’ve done this.  Expect him to cry, to grieve. Then have a low-key activity ready that you can do together. Take the trains down once in a while, but don’t let it be a regular thing anymore.

Fearing the worst, I stepped into Blue Eyes’ truck as they were pulling in from school. We chatted a bit, and then we explained to Joseph what we’d done, and why. We tried to emphasize that we’d done it because we wanted him to play with us — not with his trains.

It was as Kelli predicted. He cried, first with real despondency. But, as hard as it was to see him grieving, I kept getting the image of Joseph puffing away on cigarettes and me finally removing them from his reach. This made me strong.

Truth was, he got over it surprisingly quickly, though I’m sure it’ll come up again and again as he goes through withdrawals.

I do not mean “withdrawals”  humorously; I truly think that this is a serious obsessive addiction for Joseph, and that it is not going to be easy for him to give it up.

But through the afternoon and evening we kept Joseph doing things with us. He helped Blue Eyes clean the fish tank and then I played tour buses with him. The evening culminated in Blue Eyes getting out the guitar and the three of us singing Christmas carols. We felt like a real family, where every one was a  fully participating member. It has been a long time since we felt this way, and it feels so g-o-o-d.

So the parents have stepped up to bat. The kid seems happier already, though I know that his pain will come and go.

What we did today was to steer our boy away from choosing Door Number One: the non-people door. We helped him to choose Door Number Two — which, though less predictable and more uncomfortable than the world of things, is nevertheless a world of infinite dimensions, nurturing connections and richness.

It was a small step for our boy, but a huge leap for his potential to develop. We are feeling proud and competent, and I think that Joseph is already reaping the benefits of more parental attention.

Because of this change, he is a changed boy. He is learning that there are many other fun and interesting ways to interact with  the world: the wondrous, unpredictable world of non-trains.

climbingAfter all these amazing leaps in development, in the last few days Joseph seems to have taken a horrifying, frightening, quantum leap backwards.

We are seeing behaviors that we haven’t seen in so long we’d almost forgotten them: weird tracking with the eyes, autistic-like movements, shying away from other kids, a decrease in vocabulary.

This morning was the worst. He just screamed and screamed. It was as if he were in some inner pain or turmoil, but he couldn’t possibly communicate about it to us.

Sigh.

Note to self: Breathe. Don’t panic. Resilience, resilience, resilience.

My RDI consultant seemed to talk about resilience incessantly when we first got on board. I didn’t really know what she was talking about, so I’d nod and let her go on without paying too much attention. I was focused on trying to survive the torture of sleep deprivation and get a grip on what autism was. Who had time to worry about the concept of resilience?

It is my observation that survival comes before resilience on the life pyramid.

But as the survival part came more into balance, the concept of resilience started to take on some meaning.

According to Gordon (Confession: I don’t know who Gordon is. This is a quote I found somewhere on the internet.): “Resilience is the ability to thrive, mature, and increase competence in the face of adverse circumstances. These circumstances may include biological abnormalities or environmental obstacles… To thrive, mature, and increase competence, a person must draw upon all of his or her resources: biological, psychological, and environmental.”

Resilience is a huge thing in autistic children — or, rather, the lack of resilience. RDI maintains that, due to a major feeling of incompetence, these kids feel like failures from the get-go. It’s much easier for them to give up than it is to “thrive, mature, and increase competence in the face of adverse circumstances.”

Joseph, for instance, used to give up all the time. He’d give up on getting people to notice him or play with him, on understanding new concepts, on toys that were a challenge, and on trying new things.

He wouldn’t even repeat something when you hadn’t heard and asked him, “What?” He’d given up on communicating after the first round.

But I think that, while it’s paramount to develop resilience in autistic children, it is possibly even more important to cultivate it in their parents.

In the early days, we’d try to engage Joseph in something and, when he resisted, we’d give up. We didn’t have the energy or the motivation. We were scared of being failures. It was easier not to try.

The entire family was drowning in incompetence. No wonder our consultant wouldn’t shut up about resilience!

Eventually resilience turned up as one of our RDI objectives. I forget its official title, but the gist of it was that when my kid tried to get my attention, I was to turn away a number of times and he was to persist.

We tried and tried with this, to no avail. I will never, ever forget the day it finally clicked. Joseph was trying to get me to make this funny sound back at him. He made it over and over to me, even though I was turned away. When I finally turned to him and made the sound back, he laughed really happily.

What was it Churchill said? Never, never, never give up.

That goes for spectrum kids and us parents. Our kids need to know we will never give up on them.

And yet here are Blue Eyes and me, being stared down by an ugly regression. I have to ask myself, why is failure so bloody easy to give into? After so much encouragement with Joseph’s development, for instance, why is it so tempting right now to give up in despair?

It’s just a glitch, Yoga Mom — a tiny blip on the radar. In a week or two, you’ll look back and wonder how you could possibly have let your spirits sink so low yet again.

Tell me again, Gordon: to thrive, mature and increase competence in the face of adverse circumstances.

In other words, to keep on keeping on. To see life in the longer rhythm – the forest instead of the trees. To focus confidently on where we’re going and, since we’re not sprinting there, to take baby steps in that direction.

There is another side to this that must be mentioned. As a fellow minister once said to me, Satan loves it when we don’t ask for help. Now, whether or not you believe in the red man with horns, we can probably all agree that, when things get difficult, there is the temptation to sink down into darkness, depression and despair. And it’s so much easier to do this when we feel isolated.

I can pray easily enough, but it is not in my nature to ask another human being for help. In fact, I despise doing it — but this morning I called our naturopath. On a Sunday. And I cried on his voice mail.

Just that little phone call, even before he called me back, made me feel so much better. I guess part of the pain is feeling so very alone in all this autism madness.

*                                           *                                      *

Now it is nighttime. Joseph’s just gone to bed. Something turned for him this afternoon. Clark Kent stepped into the phone booth and, once again, Superman ran out. Suddenly Joseph is once again GREAT — funny, literally slapping my hand away when I tried to help him, coming up with more imaginative play than we’ve ever seen.

Resilience.

Let’s make a deal, shall we? Let’s never give up on our kids, and let’s never give up on ourselves. Let’s cultivate strength, courage and faith while it’s easy — so that, when it’s hard, these qualities will see us through.

And let’s have the vulnerability, the humility, to reach out to someone else — someone we can lean on when it’s just a little too difficult to stand up all by ourselves.

Joseph just woke up. He came in and said, “I had a good sleep. It’s morning time now.”

RDI calls this “reporting”: telling us what’s happening in one’s life just because it’s nice to share. We’ve never had this before. I’m loving it.

Previously it’s been hard to get even a snippet of information from Joseph, especially because, RDI style, we try not to ask a lot of questions. I might say, “I bet school was fun today…” and wait for his response. Even short responses have been a rare blessing.

But in the past week he’s become a chatterbox! Yesterday he and Blue Eyes came home and Joseph jumped right in, telling me how they’d gone to a new restaurant and how much fun he’d had there running around. Also, now when he does imaginary play, he narrates the whole thing.

People are finally and firmly becoming a part of  his play. The mom and dad and their two boys are lining up to get on the train — oh, and their baby — and now they’re getting off and going home to bed…

Or a firetruck screams up to the fire, the front door opens up and a firefighter comes out. His name is Yozin, I’m told, and Yozin gets busy climbing ladders and breaking windows to save the burning house.

It used to be only about the trains. Or the firetrucks. People were never a part of the picture.

More has surfaced than that. The locking of eyes and shared smiles. New expressions like, “I’m being funny,”  Important little things that I never noticed weren’t there before: “Ummmm…” (can you imagine never saying “Um?”), “Owww!”, that kind of thing. All said very appropriately.

He’s saying our names, including them in his sentences, using them to get our attention.

Socially, Joseph seems to be getting how to play with his peers. For instance, we were in the pool the other day with a little friend. He turned to Joseph suddenly, said, “Ready, set, go!” and swam off for the other side.

Joseph immediately got it and raced after him. When they reached the other side, he turned to Chris and said, “Ready, set, go!” right back — and off they went again.

This is something we worked on in RDI a while ago: seeing the pattern in things, being able to join in and then to add (and adapt to) variations. But to see it happening, dynamically, right before my eyes is no less than miraculous.

Words cannot express.

In my opinion, we owe much of it to Valtrex. Hard work, gut health, RDI too — but Valtrex is the new kid on the scene.

Joseph’s been on it for 6 weeks now. Our educated guess was that he had an undetectable virus running in his system and that Valtrex, an anti-viral, would address it.

This seems to be exactly what’s happening. It’s so encouraging! It is like watching a miracle unfold, slowly but surely.

Joseph’s preschool teacher tells me she’s giddy with his progress. It’s time for his semi-annual assessment, but this time she’s putting aside the special needs assessment and using the typical one. It’s more relevant now.

My heart is daring to hope just a little bit more. Parenting is actually starting to be fun.

My little boy is blossoming, and it is by far the most beautiful flower I have ever seen.

California is in a massive budget crisis and, as can be expected, the ones who are feeling the pain the most are the elderly, the children and the disabled. I spoke with my coordinator today, and she confirmed that RDI will be one of the things slashed. Out of everything else, this will hurt the worst.

We started RDI (www.rdiconnect.com) when Joseph was maybe 2 1/2. He and another little guy with ASD, Gary, were enjoying an automatic door opener, and Joseph kept looking back at him to share the fun. Gary’s mom said, “He’s emotion sharing! You should get him in RDI.”

It stands for Relationship Development Intervention. We started with a very basic thing: eye contact.

Many behavioral interventions will teach these kids by rote. It’s very common to hear these people say, “Look at me,” “Look me in the eye,” that sort of thing.

RDI is different. RDI taught me to pause within a sentence. I learned to say, “And for lunch we’ll have…..”

Pause — even for a l-o-n-g time — until I got eye contact. Then “…chicken nuggets.” Lots and lots of pausing. I still do it sometimes, when I feel the eye contact is less than it could be.

Eventually we got to the point where Joseph was giving me more eye contact than the cat did. Breaththrough!

Basically, RDI aims to make development natural. Even though it’s consciously cultivated in kids with ASD, it’s done because they see the importance of it, the joy of it — rather than because they’re taught to do it as a static thing.

This is important. When you meet someone and they say, “How are you?” The answer won’t always be, “Fine. And you?” We need to learn, not static ways of interacting in society, but dynamic ones. RDI focuses very much on dynamic communication, dynamic education, etc. It makes a lot of sense to me. And it’s done wonders for Joseph.

Just now we’re working on communicating via gestures. When we got to this objective, I was astonished to see that Joseph didn’t use gestures. Period. He communicated well verbally, and even expressionally, but not with gestures. It’s been a rather steep climb, but we’ve made great progress. This morning he said, out of the blue, “Green juice!” and made the ‘thumbs down’ sign. Then he said, “White juice!” and made a ‘thumbs up’ sign. That’s my boy!

But without RDI pointing it out, I may never have realized he didn’t use gestures. It’s a skill that other skills build upon, so if we hadn’t worked on it, it would be missing in his development. Period.

And our RDI consultant, Kelli. She’s been in our corner from day one, and when you have a child with autism, you really need people in your corner. She’s helped us with every single question we’ve had, every behavioral issue, even things like how to make a trip to Disneyland a success. Time and again she’s held out a liferope when we’ve felt we were drowning. Step by step she’s helped us help Joseph to develop. Whatever will we do without her?

With the costs of the treatments, amazing preschool, and other things we’re doing for Joseph, I don’t think that we personally can afford to take on RDI.

But I’m not going down without a fight. I haven’t been practicing public speaking for nothing. I’m going to approach service organizations, for us and other ASD families, to see what help they can offer. This is far too serious a thing to just throw in the towel.

Start pounding the drums. Yoga Mother is putting on her war paint.

rodric and Kai close-up 6It’s hard to explain Relationship Development Intervention (www.rdiconnect.com). Basically, it breaks development into thousands of tiny qualitative steps. A consultant assesses where you child is developmentally, and then the parents work with their child to take the next few tiny steps, which RDI calls objectives. Once those are mastered, you get the next objectives. It’s brilliant, and has been incredibly helpful in our work with Joseph.

I’ve been to a number of RDI parent workshops, and the one thing that always comes up between us parents is what we call RDI guilt. Because RDI is totally parent-centered, this is the guilt that arises because none of us feel that we do enough RDI with our kids. I have been known to suffer from this guilt — but not today!

The inspiration started because Blue Eyes (husband), Joseph and I were at a festival in town. There was a bouncy house there, and we walked over and watched the kids jumping for a few minutes.

Now, let me explain that only once has Joseph been in a bouncy house, and that was at a private birthday party with only 3 other kids in attendance. Any other time we’ve encountered such an animal, Joseph has adamantly refused to have anything to do with it. Strange kids, odd set-up, lots of noise: forget it.

So I thought we’d watch and that would be it. But when the kids’ turns were over, Joseph couldn’t wait to go in. Blue Eyes went over with him and helped him  through the little door.

But then it happened. Joseph started to scream, “I want out! I want out!” and Blue Eyes helped him out. Well, we tried, I thought.

Then I watched all that RDI coaching click in for Blue Eyes. Encouraging competency in these kids is a big part of RDI and Blue Eyes didn’t give up and let Joseph feel that he just couldn’t do it. He got Joseph to start jumping on the little inflated part just outside of the bouncy house door. I was watching from across the way, and I could see Joseph’s face go from unhappy and frustrated to exhilarated.

Then, with Blue Eyes’ encouragement, Joseph crawled back in the house. Blue Eyes held his hand through the entryway, and Joseph jumped again. It wasn’t long before Blue Eyes was out of the picture, and Joseph was having a great time inside the bouncy house. He enjoyed it just as much on his second round!

In RDI terminology, Blue Eyes scaffolded Joseph by helping him until he could do it in his own. It was some of the most beautiful scaffolding I’d ever seen — and all the more so because it was entirely spontaneous.

I was so inspired that, on the way home, we stopped to buy lemons and honey. Once we got home, Joseph and I made lemonade together. RDI is all about interaction and apprenticeship, so it was easy to use those principles as I coached Joseph in juicing the lemons, filling the pitcher with lemon juice and water, pouring in and stirring the honey, and of course tasting as we went.

It was a very satisfactory experience for both of us, especially as we enjoyed our lemonade together afterward.

And, after that, we cleaned up his old paint cups and filled them with new paint. This, too, was very interactive and encouraged feelings of competency.

So today I am a rockin’ RDI mama! And Blue Eyes is a blow-me-away RDI papa!

I do love RDI when I’m not feeling guilty about not doing enough of it. One thing I love is that it gets you out of the compulsion to drive your kid here, there and everywhere in order to see if other people (the “experts”) can fix him. It scaffolds the parents so that they can work with their child in really amazing ways.

When talking about this journey of autism, RDI is fond of saying, “It’s not a sprint — it’s a marathon.”

And on this marathon, we find that, whereas typical kids may get something with just a few repetitions, our kids sometimes need a little (or a lot) more help learning something. BUT. We still get there.

And every time we end the day feeling encouraged, hopeful and competent, it sets us up for a great tomorrow.