Zigging and Zagging Along

So the fish are no more. I watched the algae overcome the tank and just couldn't get it together enough to clean it again. A couple of days after a distinct smell started to eminate from the tank I wondered aloud to RT what was worse: letting the fish choke to death on the algae, cutting off their air supply, or consigning them to the porcelain chair in the next room. In the end the sound of swooshing water won out because I couldn't live with the smell of that water for another day.

The image of the two little survivor fish trying valiantly to escape my little green net by zigging to my zags was brought to mind on Friday afternoon when I took Oliver for his first session with the OT from our school district. Since Oliver is on track to start Kindergarten next year the idea was that we should start taking a look on what additional motor skills he might need to work on. This first meeting was meant to be a get-to-know-you kind of thing where she (the OT) would just observe Oliver at various activities set up throughout the room. The trouble though was that Oliver, much like those fish, wasn't keen on coming to rest in any place in the room where he could be trapped. So as the OT zigged my boy zagged. It was kind of amusing to watch at first but also frustrating that she seemed so inept (although she does have experience with children with autism and is every inch the caring professional) and then a little sad as I tried to imagine if this is how Oliver might experience kindergarten. But I'm not going to get to ahead of myself here. Who is to say what might happen in the next year? I've committed to keeping our appointment with the OT this friday but if I still feel this way afterwards we won't be going back. We have enough to focus on.

There are two things on our horizon that I feel very excited about: first, we have made an appointment with Judith Bluestone of the Handle Institute and will be seeing her in December and second, I have engaged an RDI consultant who will begin working with us in January. RDI is something that I read about earlier this year after reading posts by some of my blogging friends. At the time I did my initial research the approach sounded intriguing to me but I put it aside as too expensive and too complicated. The truth is that it is neither. And after testing Oliver's response with some simple activities I am more and more convinced that RDI is a good fit for us as a family. I'm not prepared yet to chuck the ABA program that we have going but I now feel that I am in a position to be more discriminating about how his program is put together.

Anyway, I hope I'm not too much like those fish, myself. I hope I'm not zigging and zagging too much here. My poor husband's head is spinning. But I feel positively bouyant and I can't wait to get home and RDI with my son. Can't say I ever felt the same about ABA.

Stay tuned.

Unexpected Lessons

There's nothing like blubbering to a room full of strangers to make you feel like you've totally lost a grip on things. I should know because that's what I did last Thursday. I am now part of the local Advisory Committee for Special Education and was asked to give a three minute presentation to the State Advisory Committee about the need for more ABA training for the teachers in our state. Easy enough, right? I was also asked to pepper in some details about Oliver and how helpful his ABA program has been. Also, very easy, you think. I practiced, revised, practiced again and thought I had a fairly good presentation ready. I was only anxious because -- as my graduate school friends will tell you -- I typically look like I am having some sort of seizure if I actually have to speak in public. I turn red (all of me -- not just my face), my voice shakes, I perspire heavily, I don't breathe often enough. It isn't a pretty sight. Only this time I hadn't counted on the emotional factor of actually talking about Oliver and his autism to a group of strangers. I had to stop three times to regain my composure. At one point the lady next to me even asked if she could finish for me!

But I did finish and afterwards I was surprised by how many people came and told me that they still got emotional when talking about their children who were now much older than Oliver. A small group of us gathered in one corner of the room at the conclusion of the formal activities and talked for more than ninety minutes about topics ranging from hiring an ABA consultant to respite care to diets and sleep. It was really uplifting.

Then, I walked to the parking lot with another mother from our local board. This woman recently sent her son, now 17, to live in a residential program because his aggressive behaviors had gotten to the point where she, a single mom, couldn't handle them any more. On the short walk to the car she told me about her battles with the previous director of special ed., about uncaring and non-supportive teachers, and about the struggles she faced during her child's time in the city schools. The new director, she assured me, is a breed apart; someone who really cares about making things work for the children. And she joined the committee to help make the system better so that other familes might benefit from her experience. The thing that has really stuck with me about this woman's story is that she adopted her son when he was 6 years old and at that time must have wondered if she would always have to take care of him. Now, 11 years later, it was clear that not being able to take care of him was the hardest part of her journey through motherhood.

As much as I hate speaking in public I will say that Thursday night reminded me of one thing: Everyday we challenge Oliver to do things that are hard for him and so the least I can do is challenge myself on his behalf at least as often; and in the end, we're all better people for it.

Who Would Have Guessed?

This thing about having fun? Well, it's fun. Surprisingly.

A scene from last night: 5:05. Mommy rushes in the door from work to the the constant Sammy refrain of mommy, mommy, mommy, mommy, mommy, mommy, mommy and the splashing sound Oliver's arm makes creating mini-tsunami's in the fish tank upstairs as Nik recounts how good, bad, and tiring his day with the children was. I slap a couple of sausages in the pan and assemble the remaining ingredients for the jumbalaya on the menu. Sam clings to my legs making me feel like I've suddenly grown an extra appendage. Oliver wanders into the kitchen dripping from head to toe and I wonder if I hear the sound of fish flopping and gasping for breath in the upstairs hallway. Then, from out of nowhere:

"Jumbalaya, crawfish pie, fillet, gumbo. 'Cause tonight I'm gonna see my machez a mio. ... "

Sam, still attached to my leg, is then whirling around the kitchen as I pirouette over and grab Nik's hand. The sound, the song, is coming from me and a glance down at Oliver's face reveals a half-frozen smile but eyes that dance and say: "What is going on here?" I reach down and grab Sam's chubby little body and spin him into the air, feet flying as we make another set of turns around the kitchen. Nik grabs Oliver, hoists him into the air as well, doing an elaborate set of spins and dips and joins in for the next chorus:

"Dress in style, go hog wild, me oh my oh! Son of a gun, well have big fun on the bayou!"

Then more dancing in the living room, dining room, up the stairs, on the beds, and a look of sheer, glorious, pleasure across each red and sweaty face. Big and Small.

OK. And now the pictures I promised.

The High Cost of Complacency

The incident at the doctor's office that I last related was just the tip of the iceburg. By Tuesday afternoon I began to sense that something was deeply affecting our little guy. When I searched my brain for possible causes I remembered that the first negative behavior scenario was on Saturday morning just as his therapist started a picture schedule. I recognized that trouble was brewing and so asked the young woman working with Oliver to make all the activities very quick. But small (and big) tantrums, flopping behaviors, screaming and biting continued with more than regular frequency through the weekend and on into Tuesday, including the disasterous visit to the doctor's office. Putting two and two together, as any parent -- and certainly any parent of a child with autism -- would do, I began to wonder if perhaps Oliver was reacting to the teaching style of his newest therapist; if therapy had become more work than fun. A quick call to Mary, our lead therapist, confirmed that she was not surprised by my concerns.

So we took stock and as a team figured out how to regroup. We decided to take the work aspects of therapy down a notch or two, up the fun quotient and work on re-building relationships. The staff member who had been a bit too concerned with data and finishing required tasks was paired with another therapist for a few days for additional training. And we -- I -- learned some valuable lessons about the high cost of complacency. There are so many moving parts to making a program for Oliver that works and sometimes I get overly focused on the logistics of it all and don't take the time to sit and actually watch a therapy session and to continually question approaches and methodology. I was aware of this particular therapists rather task-oriented approach about two weeks ago but didn't stop to consider the impact until it became obvious that Oliver was experiencing some rather extreme anxiety. But, if something good can come out of something bad, I believe that this series of events has also hightlighted for me my own focus on tasks at the expense of fun -- and not just as it relates to parenting Oliver.

So, onto a new approach and thank you to Oliver -- again -- for pointing the way!

This lovely fall weather has cooperated nicely with our new fun-fun-fun approach to life in the little green house. We've been spending our share of time outdoors, greedily taking in the crisp, sharp air. I would post some pictures to prove it but blogger is apparently all blogged out and won't let me add my photos. So you'll just have to imagine Sammy "milking" the wooden cow for the moment. ...

Following the Storm

Yesterday I sat watching Oliver in the waiting room of our pediatrician office and I'm sure my face fairly shone with the pride I felt. Oliver, my beautiful, sweet Oliver was moving from place to place, interested, exploring everything. There were only two other people in the waiting room, a mother and her teenage daughter, and they were fully engrossed in conversation, not paying a bit of attention to how exquisite my boy was for those moments. I even laughed out loud when Oliver played with his reflection in the fun house mirror. And I thought to myself: "This boy is really going to be OK." He is so easy these days. I can take him anywhere and I never have a problem with him. And if that mother and daughter had been paying attention to Oliver would they have sensed that something about him was different? Would they see the little things that I was so sensitive to that set him apart from other four year olds? That noise that he made when making his way across the room? The way he occasionally stopped and bit the back of a chair? The way he kept moving his hand across the reflective surface of the mirror?

So perhaps it was it was because I was feeling so smug that I didn't pick up on the clues that might have warned me that trouble was ahead when the nurse finally called Oliver's name. Instead, I noted with pride that he looked right at her when he heard his name called out. I asked him to give me his hand so I could lead him from the waiting room and he came but then immediately yanked his hand from mine and retreated to a toy at the far corner. I went to him, lowered myself to his level and asked him to come with me, which he did. But as soon as we were in the examination room it became apparent that Oliver was full of anxiety about being there. He began to wail and scream and flop to the ground. When I tried to pull him onto my lap so that I could comfort him he arched his back and became dead weight on the ground. I tried to be soothing and calm. I got on the floor next to him but I could feel my own heart racing. When we moved out to be weighed and measured he did calm down momentarily but then flopped and screamed again as soon as he stepped off the scale. I occupied myself with trying to talk to him, to get him to come with me, to soothe him somehow but I could see a group of shoes out of the corner of my eye. People standing there, staring at us, somehow making everything worse.

When we were finally able to move back into the exam room, the nurse returned and began to ask me questions about his eating, his activities, etc. Then she launched into a series of questions and I was so pre-occupied with how upset Oliver was that I didn't realize immediately that she was asking me questions from a developmental milestone chart!! After two or three questions I finally turned to her and calmly said that I didn't think it was appropriate to ask those questions and that I didn't want to answer any more. She apologized and looked at Oliver and said, almost to no one: "It must be so hard." I wanted to smack her.

We have been seeing a nurse practitioner rather than a doctor for all of our health care needs because we have found one who is sympathetic, pragmatic, caring and optimistic -- exactly the right combination. But we had to wait for her for what seemed an interminable amount of time. And when she finally did enter all she wanted to do was ask questions about Oliver and his therapies, which, under other circumstances I would have been happy to talk about. But as it was I could not concentrate on anything more than my son and so I told her that we had better get on with it. I just wanted to get out of there because by that time I had also lost control, was holding tightly to Oliver and both of us were crying into a puddle on the floor.

I always get angry when I hear autism spoken of as a "devastating" disorder. Autism is not devastating to me because my son has autism and he, my beloved Oliver, is what has brought the most meaning to my life. But sometimes there are bumps in the road that are difficult and everyday we are challenged to give Oliver the tools he needs to cope, to learn and to grow. One of the most difficult things about autism -- to witness, to live through, to talk about, to write about -- is when a parent watches their child injure himself on purpose. When I see Oliver become so agitated, so driven to the extremes of frustration that he bites himself hard enough to leave teeth marks and bruises, and when I, his mother, am so incapable of helping him. ... well, that is hard. So when I first had to restrain Oliver from biting me and then watched as he tried to turn on himself I knew I had not paid enough attention to what he was trying to tell me.

As soon a we left the building, Oliver was fine. I re-adjusted the rearview mirror in the car so that I could keep a constant watch on him as I drove. Only his red, splotchy face hinted of the storm that had just passed. That night, after Oliver had fallen asleep and I had gone over the events with Nik I retreated to the bathroom that I am in the never-ending process of painting. As I quietly worked I went over and over the events, trying to see where to lay the blame. Our last visit to the pediatrician office had gone smoothly enough. Oliver has never reacted so vehemently about being in any other space. Was it the fluorescent lights? Was there a smell I didn't detect? Was he expecting to go to another examination room?

One thing I know for sure about yesterday: I failed Oliver. He was communicating something to me as loudly as he could and I didn't listen. I don't know exactly what he was trying to say but I do know that next time I will retreat with him when he needs more time and space. I will hold his hand in mine and only move forward when he is ready. Damn the expectations of others.

From the Inside Out

Did I mention that Judith Bluestone has autism? I think that is why I have been so drawn to her book. She has the emic and the etic of autism; not only does she understand the experience of autism from the inside out, but she can also explain it within the context of the central nervous system because of her understanding of the subjects of neuropsychology, neurophysiology and neurorehabilitation. She is a neurological translator.

MOM-NOS asked after my last post about Bluestone's take on the Theory of Mind. Rather than paraphrase I copy here a few key sentences:

"I believe that those of us whose sensory-motor experiences are unusual, who cannot sustain our attention as others might on continuous shifts in the nuances of facial and bodily expression of someone in our immediate environment, who cannot allow ourselves the sensations of discomfort or pain to move in ways similar to those of the people around us, and who therefore cannot fathom what other people are feeling beacuse we cannot allow ourselves to feel what we are feeling -- we may not understand what drives another person's behaviors, and therefore we may be deemed to have no Theory of Mind.

However, the other person, in turn, does not understand what drives our behaviors. Is it only because the other is in the majority that we are deemed to be lacking this quality?. ...Why cannot the other -- the adult or child who does not have these abnormal neural messages interfering with his ability to communicate -- why can he not understand my intent?"

I also particularly like what she wrote about what some might call "stimming", especially because it has helped me put into better context some of Oliver's behaviors. She writes: "As a child, I spun the wheel of the tricycle around and around, feeling and seeing how the movement of my arms and the resisance of the pedals affect the rhythmic or dysrhythmic movement of the wheel. I began to build a unity of sensory experience. If I was interrupted before this unity occurred, I needed to revisit the experience. sometimes, just because so many other things in my day had jumbled my senses, I needed to return to the activity that unified them."

I hate to quote and run tonight but one feverish and one teething boy kept me up for most of the night last night and my alarm is set for five thirty in the A M tomorrow because of this intrusive little thing called work. ...

Changing my Mind

I've written before about the disasterous experiences we have had when having Oliver evaluated at various clinics by so-called experts. The last time we drove an hour for an evaluation at a highly reputable children's clinic that is part of a University Hospital. The good doctor spent about a half hour with Oliver and then basically told us: "Yup, he's got autism." To which I should have responded: "And what? We've paid you a gazillion dollars to tell us that?" After that I determined that I would never put Oliver -- or ourselves -- through something like that again.

But I've changed my mind. Last week I finally got my copy of The Fabric of Autism and the way author Judith Bluestone writes about autism, about sensory problems and about how they lead to certain familiar manifestations was incredibly exciting to me. It all made sense. I couldn't read it fast enough. I got half-way through reading each page completely and then couldn't contain myself and kept skipping and skimming through the rest of the book. Then I picked up the phone and called the HANDLE Institute in Seattle. Even before I spoke to Nik about it I knew that I wanted to take Oliver there to be evaluated. Luckily I found out that they also conduct evaluations in New Jersey and Atlanta, both of which are closer for me. And so in December we will make the long drive to New Jersey to start Oliver on a HANDLE program. And in the meantime I feel like I've been given a window through which to view my little boy and to understand better what motivates him to do certain things. I also particularly like her take on the Theory of Mind.

Anyway, Oliver had a kind of rough day yesterday. He woke up and immediately started biting his nails -- something we have been trying to stop for months with no luck. He wasn't able to focus well during his morning therapy session and cried a lot and seemed anxious in the afternoon. After such a long string of incredibly good days lately I had to wonder what was going on with him. Then I wondered if it had to do with our latest home renovation project. I'm paining the bathroom and have been using an oil-based primer. Even though I've been keeping the windows open and the exhaust fan on, it has taken a few days for the fumes to dissapate. After reading Bluestone's book I wonder if maybe it is the smell that is causing Oliver some extra anxiety.

A funny aside about the nail -biting is that my poor boy's fingernails are so short that he can't possibly bite them down any further and has started trying to bite MY nails!

Happy October, everyone! And may the fresh autumn air blow away all of our gassy fumes!