We Go With Him

My Son is 12 Years Old Now: Some Thoughts on Early Intervention

 A new Pediatrics study of how "highly effective" early intervention can be for toddlers on the autism spectrum has been getting quite a bit of discussion in the media and blogs. The study's participants were 48 children aged 18 months to two and a half years, who had been diagnosed with autism or PDD-NOS. They received 20 hours of therapy involving ABA (applied behavioral analysis) teaching methods and developmental ‘relationship-based’ approaches, the so-called "Early Start Denver Model." The IQs and receptive language of the children in the intervention group increased significantly more than those of children in a control group (these children "were referred to community-based programs for therapy," according to a UPI article).

Charlie, who was diagnosed with autism when he was just turning two years old, started receiving Early Intervention (EI) in the form of 40 hours/week of in-home ABA therapy when he was 2 years and 4 months old. He continued to receive more than 20 hours/week of ABA therapy along with speech therapy and OT. While we never did any sort of actual "developmental 'relationship-based'" therapy, Jim and I read a number of books about Floortime by Stanley Greenspan, M.D., and much of the play that Charlie's therapists, and we, interspersed with his more formal ABA programming bore than a resemblance to Floortime-sort of methods.

Charlie certainly benefited from all this teaching, though it did not result in him becoming anything like "recovered from autism." Indeed, as I've regularly noted, he continues to have many challenges with his academic learning and to struggle with communication and social interactions. Certainly setting up all those hours of therapy and learning a number of teaching techniques made Jim and me feel that we were doing what we could, if not all we could, to help Charlie. We do think that those early teaching sessions created a lasting foundation for learning in Charlie who, to do this day, wants to go to school and does his best to learn.

Frankly, I think it's pretty difficult to argue against Early Intervention for young children with developmental delays. We can't go back in time and see what might have happened had Charlie not had all those hours of teaching when he was a toddler and preschool age, nor would we want to. I do feel a bit more than wary of any claims to Early Intervention making it more possible for a child to be mainstreamed, lose a diagnosis, lead a "normal life." Charlie received the kind of high-quality and intensive Early Intervention that is routinely recommended these days. Nonetheless,, if you've been reading this blog for the past couple of months, you know that he has very huge struggles, and some of the behavior and other challenges that are of the "textbook autism nightmare without end" sort.

I'm going to sound like a bit of a crank, but, even as it's important that more and more studies are done about the efficacy of Early Intervention, I've a growing, nagging sense that too much energy is not being focused on the areas of real and growing concern. Charlie continues to need a number of services "despite" all of that Early Intervention, and he is hardly the only getting-older-as-in-adolescence/teenagerhood/adulthood child on the spectrum who does. An article in the December 2nd Washington Post starts by noting that

A Clean Bill of Health

 Charlie had a physical Tuesday afternoon. We've been taking him to the same pediatrics practice for the past six or so years. I don't know why but almost every time we've gone to a doctor someone we know has recommended, it's never worked out (and one of the people who recommended a particular pediatrician was the parent of an autistic child). I chose the current practice because there's a couple of pediatricians who are part of it, it has walk-in hours in the morning if you're trying to figure out if your child has the sniffles or a verifiable cold and you'll need to take the day off from work, and it has an easy-to-get-to location (but, alas, a quite small and hard-to-maneuver-in parking lot).

Fortunately I have become better at parking the car over the past six years. Nothing like having a (1) sick child or (2) a nervous child because you're going to see the doctor and sit in a cluttered waiting room for 30 minutes before going to sit in a tiny exam room for 15 more and then comes the check-up---and getting him (and yourself) more agitated because there's no parking anywhere near, and the practice is located on a fairly busy street.

I know parking the car is a minor detail (and most of you who are reading this probably don't give it all the thought I am here). In going through the daily rounds with Charlie, often it's been those small features of every day life that become especially challenging. Necessity being the mother of invention, when the small detail must be done to get something else done for Charlie, I've steeled myself to do it, all while wishing we had a much smaller car and knowing we're not going to, as Charlie needs his legroom in the backseat.

He's just a quarter inch shy of being 5' 7", we found out today. At first I thought we'd have to forego measuring Charlie as, after a nurse had coaxed him to stand against the wall with his head beneath the measuring stick and feet together, he slid away and said "no, no" about doing that again. I suggested waiting till later to measure him and we went into the exam room. The nurse wanted to take Charlie's blood pressure but he has not been wanting to take off his jacket; I recalled how an attempt to have him to do this for the nurse at his new school had resulted in him becoming very upset and asked if we could wait on that too.

The nurse practitioner came in. We've taken Charlie to see her for the past couple of years after meeting all the doctors in the practice and she's been patient and very respectful of Charlie and his sensitivities. When Charlie received a number of vaccines a couple of years ago (these were the vaccines that he should have received when he was 5 but had not), she started asking me if I had concerns about the MMR or vaccines in general. I assured her that we had none, but really appreciated her asking.

She showed the same informed respect and compassion throughout yesterday's physical. She first asked me about Charlie's school placement; she remembered that we had moved specifically to have Charlie going to our town's public school autism program, and frowned when I told her about the past year. She was of course glad to hear that Charlie seems so far to be doing well at his new school, though regretting that his chances for social interactions with other children are much lessened (I did point out to her that his old public middle school did not make any such opportunities available). She wanted to try to measure his height again, but agreed to wait till the end of the appointment.

It all went very smoothly. She checked Charlie's eyes and ears, listened to him with the stethoscope (that made him giggle---guess he's still ticklish). She asked Charlie to take off his shoes and jacket and he did, and let himself be measure, weighed, and have his blood pressure taken. At that point, the nurse practitioner noted that Charlie needed two vaccinations (tetanus and Hepatitis A). I said sure, mentally noting that if it didn't happen, we could come back---a far real change of attitude from when Charlie was younger and the thought of having to bring him back to the doctor evoked plenty of panic. She brought in the two syringes, I touched more than held Charlie's hands. He didn't flinch at the first vaccine (the nurse practitioner is very fast) and then said "no" and pulled away his arm for the second. I placed my fingertips very gently on his and before we knew it, the nurse practitioner had administered the vaccine and we went out to the white car.

Which I had parallel parked a few feet away, in front of the doctor's office. 

Roundabout

 "Periphrastic" is a term that refers to when more than one word is used to a "grammatical notion." In Latin, for instance, something called the passive periphrastic uses the future passive participle (this would look like this: faciendum) plus a form of the verb "to be" (esse). Id faciendum est means "this must be done"; both the future passive participle and the form of the verb "to be" are needed to express the notion of something having, by necessity, to be done. Neither faciendum nor esse can do this on their own.

The word "periphrastic" derives from two ancient Greek words, peri, meaning "around" (as in the word "perimeter") and phrazomesthai, meaning "to speak." So a periphrastic construction "speaks around"---adds too many, if not extra, words---to say what is meant to be said.

Charlie having speech but speech that is limited in numbers of words and types of grammatical expression---as I noted yesterday, his vocabulary consists primarily of nouns and, too, adjectives---he has only a few words to express everything he'd like to. On the one hand it's important to teach him phrases and expressions to express these basic things, and in ways that people "in general" might understand. On the other hand, it's as important to acknowledge his efforts to communicate, and to try to figure out the multiple meanings that a single word Charlie uses can carry.

After a starting-with-anxiety-but-turning-out-good day back to school, I picked up Charlie. We did a couple of errands (bank, Walgreens) and, after a large snack (more like Lunch #2), Charlie and Jim went on a walk (with an umbrella that went mostly unused). On returning, Charlie asked to go out. Once in the white car, he asked to go to Trader Joe's, only to say (as he always does these days) "no" as we neared the store, whereupon I turned the car back. We passed another store and he told me "no" to that one, and then directed me to drive to a local grocery store. Once in the parking lot, he told me "no, no" so back out we went.

Having visited three grocery stores and heard "no" to all of them, I drove us home. Charlie came inside and sat on the couch, and wasn't interested in dinner (paper-wrapped chicken and rice cooked just right, so there's a golden crust, the nong at the bottom). After sitting for awhile, he asked to go to "Trader Joe's" but, having already offered that option and seen it objected, Jim and I said that we could maybe go tomorrow. After awhile, Charlie asked Jim to go and get gas, which they did.

It's not the first time that Charlie and I have gone out to get groceries, stopped at three stores, and gone home empty-handed. Jim and I haven't yet quite figured out what Charlie is trying to tell us; feeling like I'm driving Charlie hither and thither without a sense of where we're going can be really frustrating. I want to honor his talking, his attempts to tell us what he wants, but sometimes I just feel like we're going around in circles, literal and otherwise.

Last night after coming home Charlie couldn't find a rubber band he'd been using as a fidget for his fingers, cried, came into the house, and things escalated with him becoming very upset. I'd taken his indecisiveness in the car as a sign of him not feeling at ease, and Jim and I wondered if this neurological storm was the result of a lag after five days off from school, and a very full five days after that. The storm is always tough when it's going on but it was really ten minutes, after which Charlie requested a walk. Once he and Jim were back, he went to his room. After a few minutes, he told me "rice, yes" and I brought in a bowl of rice, a plate of nong, and some chicken.

I tripped in the hallway and the entire bowl of rice ended up on the floor. I don't think it mattered, as Charlie was busy consuming the nong and the chicken, and smiling. I usually either don't cook the rice long enough for the nong to form, or I burn it; last night it was just crunchy enough, and a little soft too, like popcorn. Charlie was still smiling when I tucked him in.

Sometimes I think it takes a roundabout, periphrastic sort of process for Charlie to figure out what it is he has on his mind, what he wants. In the heat of the moment I often wish it could be easier for him to tell us things without so much periphrasis, so much talking around, and maybe a little less driving too.

Of IEPs & Crumb Cake

 At 11am EST today I'm speaking on The ABC's of an IEP on the Autism Women's Network. I know more than a few of you out there are as well-schooled (pun intended) in this particular area as I am (or as I seek to be---as many of you know, in the heat of the moment when you're advocating for your child's education and future, one can feel as if one is making every mistake in the book). So hoping that any and all of you will add your collective thoughts and, yes, wisdom to the discussion. One can feel so alone when at a meeting face to face with what can seem like a posse of administrators and school personnel, but we're all in it together.

We'll be having an IEP meeting in a few weeks. Charlie's change in schools necessitates a change in his IEP, as he's now in an out-of-district placement at a school specifically for children with disabilities (while most of the students at his school are on the autism spectrum, some have additional and/or other diagnoses). One notable difference in his new school is the ratio of teachers of students: Whereas as there was one teacher and four aides for four students in his former public school autism classroom, there is one teacher and two aides for six students in his new school. Under serious consideration will of course be the matter of the helmet: Charlie's current Behavior Intervention Plan, written by school personnel (his Child Study Team), specifies the wearing of the helmet at all times with no ifs, ands, or buts. Already we've gotten the sense that the new school is more, how to put it, going about things a bit differently, having him remove it on a warm day and not fastening it as tightly to his head.

Charlie's speech therapy and occupational therapy services have not changed much, with the difference that he is now receiving the latter (OT) regularly, as the OT in his public school program left at the end of the previous school year and a replacement had yet to be found (and, she now works at the autism center where Charlie is). Also, we suspect that he was not receiving the speech therapy services that his IEP spelled out at his old school, as the former speech therapist indicated that Charlie was "often not available"---i.e., he was having "behavior problems" that made it not possible for her to work with him. So, someone should have started addressing those problems so he could have worked on speech, especially as one of the main reasons, Jim and I think, that he had so much trouble at his old placement was that his communication attempts were not being adequately acknowledged and understood. 

After no school for five days due to being sick last Wednesday and to Thanksgiving, Charlie was more than ready to go back. Sunday was an automatic Transition Day, during which Charlie woke up cheerily and asked for a walk. I'd just gotten back from running so I grabbed an old coat (of Charlie's---he was wearing it last year) and out we went. After about a minute he started running and then he started a low hum that became somewhat louder and then, after turning a corner, a definite moan accompanied by a litany of words:

"Aunty Joan Portia. No more head bangs. Ice. Hi Grandma, hi Gramma. Good morning everybody, good morning, what day is it, today is Monday. No more head bangs. Portia. Gong Gong Po Po."

On and on.

Backseat Navigator

 "This way." "That way, that way." "Go straight!" "Right, yes, right." These are just some of the directions Charlie has been giving us as we drive the white car around. His sense of direction is impeccable, or so it seems. When a couple of blocks before there's an intersection Charie points ahead and says "I want, I want," we know Charlie knows where he wants to go, and where he wants us to go.

That wasn't my first thought on hearing those "I want"'s from the back seat of the car. I figured that Charlie "wanted" something and, in particular, something to eat. Food is the main item he tells us he'd like, along with some toys, CDs, DVDs. But the "I want"'s in the car have been of a different sort, precisely as Charlie isn't requesting some concrete, tangible thing. He's asking for something far more imprecise and abstract, that we go in a certain direction, "left," "right," "straight."

I've been finding these "in the car I want"'s indicative of something new in Charlie's use of language, in that he's asking not for stuff, but for something that's more, how to put it, abstract? that's an idea, a concept. Of course, Charlie's not asking for hypotheticals, but for something that he can see (going in a certain direction). But asking for "go straight" and "turn right" isn't the same as asking for crackers or a video. The result isn't something you can hold in your hand and eat or play with. Charlie's learning to ask for other things, for something other than things.

Most of Charlie's words are, indeed, for things. His vocabulary consists primarily of nouns. This could in part be due to those being the words teachers and therapists have tended to teach him; this could also be due to it being the fact that such words are most readily learnt by Charlie. Certainly I remember how Charlie was able to label and point out a number of flashcards of objects. When it came down to learn verbs or "action words," he struggled, whether we used flashcards with photos or whether we had him perform whatever action was on the list. "Want" is one of the few verbs that he uses, though as much of what he says is requests or "mands," the notion of "wanting" is often implied in his speech.

For instance. My parents flew back to California early Saturday morning. Friday night, Charlie stood beside my dad and told him "hug," as he wanted to give my dad a hug (and Charlie then did so, giving my dad one of his "armless" hug-touches). 

Afterwards Charlie looked at my dad and said  "We love you. We love you." And then, some minutes later, Charlie looked vexed and told me "no we love you. no we love you." I'd say he was processing through feelings of good-byes and missing people, and of the puzzling notions of "see you next time" and "see you real soon." And a part of him was feeling, this is too complicated, I'd rather not deal!. 

But Charlie did and, after my parents drove off in their rental car, Saturday was very pleasant. A strong wind blew out the clouds and left a beautiful blue sky and much sunshine and, later, a full moon. Charlie and Jim did a vigorous bike ride and then, at intervals throughout the rest of the day, three equally vigorous walks, with Charlie running strongly for much of them.

 I'm just relishing that Charlie not only knows where he wants to go, but is able also to show us the way and to let us know all about it.

A Good Friday

Black Friday began on a bleakish note for us. Charlie dutifully got into the white car at 7.45am and walked into the waiting room of LabCorp, to get his blood drawn for testing. After a half-hour wait during which the receptionist, with a quite large sigh, prepared all the paperwork for the tests, Charlie sat down in a chair opposite a technician, Jim and me standing close by. He said several "no's" once the rubber strip was tied around his upper arm and the needle and vial produced, and then it was clearly time to get out, Jim getting Charlie back to the car while I told the front desk, we'd have to reschedule.

Charlie's neurologist has wanted him to get a number of tests done since the summer, some to test for various genetic conditions, some due to the medications Charlie is taking. Charlie had gotten his blood drawn back in the spring with Jim and my parents beside him. Alas, the lab was unable to perform many of the tests. Jim and I had been hoping that that would be the end of it but, vae nobis, it was not. 

Once home, Jim and I formulate a Plan:

• I contact the neurologist and ask if all those tests are really needed? (I.e., do we really need to draw that much blood from Charlie?)
• Jim plays the role of LabCorp Location Scout to ascertain if it's the right sort of setting.

In the past, not being able to have a successful experience with the testing would have made us feel like this Friday was a truly black one indeed. Jim and I reminded each other that we needed to do exactly the opposite, that Charlie himself comes out of such situations feeling vexed and ashamed and just not so great.

And we all had a good Friday. It was the last day of my parents' visit and they spent a good part of the day making paper-wrapped chicken. The little parchment packets of chicken, marinated in soy sauce, rice vinegar, ginger, and green onions, are perfect lunchbox food. My dad had cut up a stack of neat rectangles of parchment paper after we'd cleaned up the Thankgiving dinner and, yesterday morning while my mom chopped and mixed, he and Charlie and I made a fast trip to Pathmark to get one more packet of chicken breasts. Charlie (we have photographic proof, you can see it above!) helped to pack up the chicken, counting out eight pieces per Ziploc with my mom.

Charlie had a lot to work through after a tough start to the morning, not to mention the lingering effects of his cold, Thanksgiving festivities, my parents' visit, a short week at school. And, of course, it's only the second week of him being at his new school. He asked to go to his favorite diner all day long. While not always very happy to hear he'd have to to wait, he did, and his patience endured through a last-minute detour to my office in Jersey City.

Mom left about half the chicken in the freezer. We'll see how long it takes (Saturday afternoon?) before Charlie fishes it out for an anytime snack. But you can be sure, I'm safeguarding some for at least two lunches next week.

Thanksgiving In Motion

 Friends joined my parents and the three of us for Thankgiving. There was way too much food, which is okay by me, it's back to work next week for us and a full-loaded fridge is more than appreciated. 

There were nine of us total and a very very good time was had by all, especially as our friends' kids and Charlie were all getting over various colds. After waiting since the morning for our friends to arrive, Charlie said "thank you" when they gave him 2 CDs (one in particular he couldn't get me to open fast enough). He sat as we all talked and requested a bike ride with Jim. After returning, he asked to shower and go to bed at 6pm; he woke about two hours later, having slept through the meal. Charlie's not really one for turkey, stuffing, or pumpkin pie, so that was as well. It's been a long time since we've had any guests over for dinner, and we assured him that he'd done just great.

Holidays, with their disruptions in the usual order of things, are never relaxing around here. Charlie had slept from 9.30pm Wednesday night till 7.30am on Thursday morning. At 8am, he was dressed and ready to go out the door at 8am. I hadn't placed his lunchbox on the middle shelf of the refrigerator, "the sign" that he's going to school. But he did want to go out. So, on Thursday, there were two mini-bike-rides, each only some 10 minutes, in the morning; one mini-car ride to the gas station in the car my dad rented; one longer car ride during which we went to look at his school and its empty parking lot; one longer bike ride in the soft afternoon sun over a certain bridge; one bike ride on the "urban route" with the sun setting prior to the Thanksgiving dinner that Charlie didn't eat. To my deducing that Charlie wants, or perhaps rather needs, to get out about once every hour, Jim said, "Sure, he likes being in motion."

It is a long-time truth for Charlie, that moving calms and soothes, eases his thinking, increases his alertness, suits him. It's probably always why water in general and the ocean in particular (swimming and, too, kayaking last summer) appeal to him. I wouldn't exactly say that he's fidgety. Charlie can be hyper, but only at selected moments. For some physiological-psycho-sensory reason, he prefers not to stay in one place for too long. And perhaps one way he deals with new situations is not only by asking for a "break" from them, but also getting himself into motion, to work things through in his head.

At school Charlie has been requesting "breaks" in the form of walks regularly. While it was some years ago that a teacher and speech therapist first thought of having him ask for a "break" when his classroom became noisy and his agitation was growing. Including a walk or some other motion-involving-activity (I know there's a more eloquent way to put that, but you get the picture) needs, I suspect, to be part of the "break."  

And riding bikes at the time that most people were loading their plates with a last helping of Thanksgiving eats and working the remote control worked out very well, as Jim told me. Honking cars and suburban Jersey traffic in general often makes his and Charlie's bike rides rather "exciting," but Thursday evening there was none of this. Jim and Charlie had the roads to themselves.

I think we'll have to make a holiday tradition of that. And sharing another Thanksgiving in such good company would be a good thing to repeat again, too.

Figuring Things Out (Thankfully)

 The mystery of the Really Early Wake-ups was in part explained when we heard a hacking cough emanating from Charlie early Wednesday morning and beheld him rubbing a very runny nose. ["Mystery" photo accompanying this post will be explained after the jump.]

I called the school to tell them that he was sick. Charlie started to get the case of CDs and tell us "white car."  He stood, long and tall in his blue hooded jacket, head a bit downcast, in front of the open door, as Jim and I quietly noted that he wouldn't be able to go, due to his cough and to being sick. Charlie stood unmoving for several more minutes before putting the CD case down and going to sit on the blue couch.

It's always worrisome to have a sick child, even with something relatively "mild" like a cold (though I'm rating this one as something more like a bad cold). I have been feeling relieved that Charlie has come down with his first cold of the season this week, as Jim and I have some days off with the Thanksgiving holidays and my parents being here too.  

Even more, I've been feeling very thankful that Charlie wants so much to go to school and that he seems to be liking it so much. I had some questions after reviewing the incident reports from Monday and Tuesday and wrote to the principal as I didn't have email addresses for his teacher or the behaviorist. The behaviorist called me back this morning and we had a good exchange. My main question was regarding the helmet, as it was noted on one of the reports that Charlie has been taking it off.I just wanted to let the school know, at this early date, that (in Jim's and my experience), the more one tries to keep it on, the more he tries to get it off and the ensuing struggle just prolongs things. The behaviorist listened and we went back and forth and suddenly I said, with a sigh and without any contention, as, based on recent experiences, that seems to indulge the warrior mom in me rather than help,

"This is a just a really difficult topic."

She agreed, with a little, friendly laugh. We talked for a few more minutes while I reminded myself, being able to keep these sorts of exchanges non-contentious is going to be key.

Sleep Is For the Weak, Oh Yes It Is

 Monday, 4.51am with a 1-hour snooze from 6 - 7am.

Tuesday, sometime before 4am with a 30 minutes snooze around 6.30am.

That's when Charlie has woken up for the past few nights and  I guess I should feel lucky that it's just been two nights. I mentioned this to another mother at Charlie's school while we were waiting to pick up our kids and she told me her son wakes up at 4am everyday. (And that she---impressive to me, being the sort of mom who pulls out a bagel and some fruit for breakfast---has made pancakes and eggs before 6am.) (I can't make pancakes, most end up slightly burnt.)

Charlie waking up so early is indeed a relatively new phenomenon. Most of his sleep problems have had to do with the falling-asleep-part. When he was about 7, Charlie started having a lot of trouble going to sleep and, by the time he was 9, he would often toss and turn for hours before finally conking out around midnight at the earliest. Mornings as a result became fraught with unpleasantries, as it was next to impossible for Charlie to wake up in time for the start of school. The morning became increasingly frantic as Charlie got bigger and the old, not really effective but what can you do, strategy of carrying him out of the bed and loading him into the car was rendered impossible. Much of last year---when Charlie started school his earliest ever, at 7.45am---was devoted to figuring out a way to wake up Charlie in as non-intrusive a way as possible, and we did find that playing music (the Beatles) and turning on the lights were fairly gentle ways to wake him. (Not that many a morning was not without its fireworks.)

We've got several explanations running around here as to why Charlie has been waking up so early. He knows that this is a short week at school with a big holiday on Thursday and my mom and dad are visiting: Two big changes in his and our routine. His anxiety about leaving his old school and starting at his new school and remaining at the new school are leading to the early wake-ups, as if Charlie, having found things all right after one week, is wanting (on both conscious and unconscious levels) to make sure that he still has a school, and that school in particular, to go too. On top of that, he's started sniffling and coughing and being congested, while exhausting, can make sleep not so easy.

Despite those early wake-ups, his Monday and Tuesday were pretty good. Monday ended with him getting upset and Tuesday started with a bout of crying. Both times he pulled off the helmet and, not that I needed a reminder, but I wrote to his case manager asking when is the Functional Behavior Assessment that should have been done last May if not last October going to be scheduled? It's certainly time to start a discussion about this potentially explosive topic and, while we have way too many feelings about it, we most definitely don't want it all to descend into snippy exchanges. Charlie is apparently able to compose himself after getting upset so things don't escalate as much as they could: Ok, not huge progress, but we've learned that if you get baby steps, you take 'em and keep working at it, gently. And, because the teachers are the ones teaching him, we know this issue has to be addressed in concert rather than in contention. (That's the ideal, at least.)

Later on Tuesday another student got very upset and Charlie and his classmates went on a walk and then into another room. I got the sense that he was agitated, but that was all. Certainly Charlie has long been sensitive to the emotions of the other children in his class, and someone else crying has upset him not only and not always because of the noise, but because, on hearing someone else feeling bad, Charlie does too.

Tuesday night Charlie took himself to bed at quarter after 6 and was asleep before 7pm: Good. I, not knowing of course when he might wake up, planned for another early morning of it.

It's something I've been appreciating. I am actually a morning person and have been making the most of these early wake-ups, reading student papers, writing emails, and making coffee while Charlie paces and asks about getting in the white car and, outside the windows, the dark fades away. 

Indeed, some students, on noting that I've been sending them 5.15am emails, noted that I seem to be getting up at the time they're going to bed. Guess we all live in a slightly topsy-turvy world in which no one gets sufficient sleep.

As for me, with everything going on, I'd rather be awake and even the early bird getting the proverbial worm.

Charlie woke up around 10pm and got fully dressed, down to his socks. It's going to be some night.

No and Yes

I would wager that Charlie understands the lion's share of what he hears. Jim and I have no direct, actual, literal, "scientific" sort of evidence for this. But we do really feel that, for all we don't (yet; always) know why Charlie does what he does and says what he says, we do know Charlie very, very well, and he us. (Does anyone every truly understand and know why another individuals does and say what she or he says?)

A student who was struggling to speak a contemporary foreign language once noted to me that his instructor had told him that he needed to "think in [the contemporary foreign language]." This advice, while making sense, also made the student something more than exasperated: Here he was trying to learn the basics of a foreign language, only to be told that he needed to start by thinking in a language that he was less than even well-versed in.

On the one hand, I see Jim and me as my student, doing our best to speak and think in a foreign language---Charlie's communications, verbal and otherwise---and knowing that we're at the very tip of the iceberg of understanding. And on the other hand, Charlie is the student who hears some other language spoken copiously all around him, who tries so very hard to speak in it and use it and everything gets all flubbed out, no matter how hard he tries to "think in" the language that Jim and I and all of Charlie's teachers and therapists and others use. Either way, one party in the exchange finds himself or herself at a severe disadvantage, equipped with only a rudimentary vocabulary and fumbling to use those few words to express the full range of thoughts, needs, ideas.

So, while Charlie understands what it means when "no" is said to him, and says "no" himself at moments when he clearly does not want to do something, sometimes (as I've noted) he means something more like "maybe" or "give me a moment, I need to think about it"---even, as I've been thinking more recently, "not right now but hold on, I need more time to process what you're saying to me." When Charlie says "yes," people tend to proffer some object or action, and it can be too late for Charlie to say he really doesn't what such. "No" defers and delays, while "yes" often has the not-always-desired result of bringing it all on.

And lately, too, we've gotten a renewed sense of how much power there is in one word, whether said or heard by Charlie. He had a good day at school but, in the very last minutes, started asking about leaving and things escalated and he very quickly got very upset. He was able to stay in his seat and get himself calmed down, which I thought, and told his teacher when she related this to me after school, commendable. 

What Gets Whispered

Upon reading about how some parents are turning to the techniques of the "Dog Whisperer," Cesar Millan, to raise their children---to a reliance on, as a November 22nd New York Times article puts it, "discipline, order and devotion" rather than a "child knows best, no is not a word in my parental vocabulary" more laissez-faire sort of approach---and first thinking "here we go, apparently the parental need for child-rearing expertise is straining at the seams with parents now turning to dog trainers, excuse me I meant whisperers!"---upon reading about Millan's "trademark 'calm-assertive energy,'" I found myself acknowledging, now wait a moment, isn't that the sort of "techniques" that we draw on in teaching and raising Charlie, even down to the rather New Age-esque mention of something like "emanating peaceful-easy, positive vibes?"

Trust me, I'm not trying to usurp any celebrities or their significant others who've talked about "autism whispering." Wwhile raising a child like Charlie is in many ways very much like raising a child who's not on the autism spectrum (though I'm not able to be 100%-plus positive in making such a statement, as Charlie is our only child), there is plenty about parenting Charlie that sets us apart from the typical sorts of things one reads about parenting and the "mommy/daddyhood" more generally.

For one thing, when I use a term like "problem behaviors," it's not "child talking back to mom, refusing to do homework, or the like" that I'm referring to, but, let's be frank, the sorts of things that can result in a child needing to be educated in a behavioral school, take various medications, and so forth. Further, the NYTimes' discussion of parents turning to the Dog Whisperer for rings a bit differently on the ears of a parent whose child has been taught using teaching methods such as Applied Behavior Analysis that some equate with "dog-training."

But the whole notion of projecting "energy" that is calm/peaceful-easy feeling: That's been an important part of our so to speak "parental toolkit" and especially since last summer, when Jim and I became intensely aware of how our moods and our verbal and non-verbal expression of these are picked up by Charlie. I'm certainly not trying to put forth any claims about some AMAZING NEW BREAKTHROUGH AUTISM TEACHING TECHNIQUE!!!!!!!!!!!!!!!!. But when a child has communication challenges like Charlie, there is a tendency to underestimate how very emotionally attuned he is.

Call it what you will, calm energies, good positive vibes, served us all well on a Sunday on which Charlie displayed a full share of Weekend Anxiety. He woke up at 5.30am and got dressed and wanted to be out the door around 7am. Jim and I convinced him to sit down on the couch and he did doze off for about an hour. After that, he was hard-pressed for the better part of the day not to talk about the "diner" where we sometimes have dinner, as if he was hoping that, if he could just eat dinner, it'd be the end of the day and he could get himself ready for the next day at school.

Having found himself very recently saying good-bye to one school and starting at a new one, Charlie's possible wanting to make sure he got himself to some school struck us as more than understandable. To his repeated requests for "diner, diner," we answered simply that it was a possibility, and offered him the full array of things in the refrigerator and cabinets. Charlie said no to most of these. He spent a good portion of the day going back and forth between the white car and our front door. He went on two short bike rides with Jim and said "no" to getting anything at Target. (Of course my mom and dad were quite ready to get him whatever he might ask for.)

Sunday was warm and bright, so it was not a bad thing to find oneself with a book or the newspaper to read in the sunlight while keeping a quite eye on Charlie. The day passed and then it was 3pm and we all got into the white car. Jim and I went to see my mother-in-law; she had a cough on top of everything else and it was as well that Charlie did not visit her this time. He did say "hi Grandma, hi Grandma," several times throughout the day and smiled while waiting with my parents. After one of Charlie's long-time favorite meals---Vietnamese summer rolls (Charlie's liking for these always trumps any requests for diner food)---we went home and Charlie went straight to his room, to listen to some music and to go to sleep, after requesting that I place his old blue bookbag beside his bed.

I did whisper "good night, sweetie" to him as I saw him drifting off to sleep. No technique here, just the good practice you get after saying those words to your own very lovely boy night upon good night.

One For the Home Team

We don't worry about this kind of 'autism recovery' in these parts, as you know. But we're more than glad to report on what some might say is a too modest sort of "recovery," in which one is able again to do simple things---having dinner with friends---that, due to circumstances, one had feared one would not be able to again.

Saturday passed in a quiet way in our household. My parents arrived from California Friday night to stay through Thanksgiving. Charlie and Jim had not seen them since April, which might not seem like such a big deal. Charlie being my parents' only grandchild (and my parents being my parents), rarely have more than three months passed since they've visited us or, when Charlie was much younger, we went to see them.

Charlie and I were watching YouTube videos when my parents drove up in a rental car Friday night. He kept watching for a good fifteen minutes after they'd come in and been talking to Jim and me. A grin came onto Charlie's face that got slowly larger and then he got up and went to his room, and then came out and sort of wove his way among the rest of us, still smiling. He rummaged in the refrigerator for the dim sum-ish treats my parents had brought him---he had a jien duey microwaved and eaten in a very short time---and went to bed, only to get up and come out and then go back to bed. Saturday morning he was up early and ready for a bike ride, and then, within about five minutes of returning from that, asking for a ride first in my parents' rental car, then in the black car, then in the white car.

I went out and found Charlie sitting in his usual place in the middle of the back seat, with my parents on either side of him. He didn't want me to drive, but insisted that Jim do so, while I got into the passenger seat. And I was reminded, that's the configuration that the five of us have been sitting in in our various cars over the years, on my parents' various visits to the places that we've lived----Jim lists these in a sort of litany here.

My mom and dad have visited us numerous times in every single place we've lived. They've always stayed with Charlie while Jim and I worked and went out until the past couple of months, when, with Charlie getting so tall and strong and having numerous difficulties (understatement, I know), and my parents, well, being grandparents, we wondered if this was no longer possible. 

While my mom and dad have taken Charlie grocery shopping since the time he was a babe-in-the-cart, Jim and I still have the memory of some recent neurological storms at the supermarket fresh in our memory, and so it was my mom, Charlie and I who went shopping this morning. There were no fireworks, just the usual bags of groceries to load and unload. A second bike ride and a haircut later, Jim and I said good-bye and went to some friends' house for dinner. In a just-in-case kind of way, we drove separately, so Jim was able to visit his mother in the nursing home, and I accompanied my parents and Charlie to get his favorite Chinese takeout (lots of noodles of varying thicknesses) and showed my dad how to help Charlie get to the YouTube videos he likes to.

And so a pleasant evening passed, including a win for this home team, and also, if you ask me, for the team (expanded to five for the upcoming week) on our own little homefront.

Freaky or No?

Rita Marcolo, a dancer in the UK who has been epileptic since the age of 17, is planning a 24-hour performance which will include strobe lights and sleep deprivation. Prior to the performance, she has ceased to take her epilepsy medication. She received a grant of £13,889 from the Arts Council England for the performance. Notes the November Times Online:

Epilepsy charities said that the event turned a much misunderstood condition into a freak show and warned of the potentially severe dangers of coming off epilepsy drugs.

Marcalo said that she wanted to raise awareness of epilepsy as “an invisible disability” and would use next month’s adults-only show at Bradford Playhouse to explore “my ‘other’ identity as a disabled person”.

Marcalo, the artistic director of a Leeds-based dance theatre company, Instant Dissidence, has been epileptic since the age of 17. She stopped taking her anti-convulsant drugs last week and for 24 hours, from 1pm on December 11, a paying audience will watch her attempts to bring on a fit.

These will involve the use of strobe lights, fasting, sleep deprivation and specially designed computer programmes, plus raising her body temperature and taking brain stimulants including alcohol and tobacco.

Performances from other dance and installation artists will keep the viewers entertained as they wait.

The Playhouse says: “At any point in the event Marcalo might have an epileptic seizure. Whenever this happens, a loud alarm will sound, lights will brighten, music will stop and a series of cameras will start recording her seizure. Audience members will be encouraged to record it on their mobile phones.”

A neuropsychologist from the National Society for Epilepsy, Sallie Baxendale, comments that:

“The upside is that it gets people talking about epilepsy, but the downside is that it’s being presented as a freaky type of entertainment as opposed to teaching people about seizures.

“The danger of coming off medication is that sometimes when you go back to the same level as before your seizures are not controlled any more. You play about with your medication at your peril.”

From the Times Online article, it's not clear if medical personnel will be on hand during Marcolo's performance. One can't help but wonder if the dancer might be risking health too much in the service of art, with such a performance? Or is Marcolo's performance rather a novel way to increase understanding and awareness about epilepsy, about what it is to have a seizure?

As a parent of a child who seems prone to some sort of neurological activity that we can't seem to figure out, I'd say that we make it a point to avoid or at least think of how to ease Charlie through any situations that might cause said activity, and seek out environments that are more likely to be soothing and not over-stimulating. And, Charlie takes various medication some of which are anti-seizure meds, and you can be sure we make sure not to miss a dose.

What I'm wondering is, what's to be gained for public knowledge about epilepsy, to witness someone, it seems, deliberately creating the circumstances for herself to have a seizure? Are audience members allowed or expected to aid Marcolo should she require such? Is she making of herself a literal "freak show"?

Often enough, Charlie being Charlie gets attention---stares and uncomfortable glances---of an uncomfortable sort. Wanting to celebrate Charlie's good first week at his new school (Friday was good), we had gone to his favorite diner last night for an early dinner. Two couples, one quite elderly, were seated in his preferred booth. They all seemed to be ordering complete Early Bird Special dinners and Charlie eyed their food and them---smiling a lot---while waiting for his burger. (He also asked a few times to try my soup.) There were some perplexed, if not apprehensive looks, at Charlie's mannerisms and his speech and vocalizations. After he had finished eating and was pulling on his coat, there was a new round of stares and questions from two boys who were dining with their grandparents, and all the more when Charlie paused between the booths, put his head down, and paused.

Sometimes we say something; last night, we didn't. Charlie eats quite a bit at this diner and he wasn't doing anything particularly unusual or exciting. Any "freakishness" was in the eye of those looking.

And perhaps that's the mindset that might be useful in considering Marcolo's performance. Freakshowness is in the eye of the beholder?

What's the Goal of it All?

Cognitive Dysfunction Reversed in Mouse Model of Down Syndrome was the headline for a new study by researchers from the Stanford University School of Medicine and Lucile Packard Children's Hospital, as reported in yesterday's Science Daily. The actual Science Translational Medicine study is about how giving norepinephrine, a neurotransmitter the helps cells communicate, to mice with brains "genetically engineered to mimic Down syndrome" improves some of their cognitive functioning. Specifically (and noting I do not know much about Down syndrome):

 

.....people with Down syndrome struggle to use spatial and contextual information to form new memories, a function that depends on the hippocampus part of the brain. As a result, they have trouble with learning to navigate complex environments such as a new neighborhood or a shopping mall. But they're much better at remembering information linked to colors, sounds or other sensory cues because such sensory memories are coordinated by a different brain structure, the amygdala.

Salehi and his colleagues looked at what could be causing the problems in the hippocampus. Normally, as contextual or relational memories are formed, hippocampal neurons receive norepinephrine from neurons in another part of the brain, the locus coeruleus. The researchers showed that, like humans with Down syndrome, the mice in their experiments experienced early degeneration of the locus coeruleus.

When the locus coeruleus broke down in the study's mice, the animals failed at simple cognitive tests that required them to be aware of changes in the milieu: For instance, the genetically engineered mice, when placed in the strange environment of an unknown cage, did not build nests. That contrasts with normal mice, which typically build nests in such circumstances.

However, by giving norepinephrine precursors to the mice with the Down-syndrome-like condition, the researchers could fix the problem. Only a few hours after they got the drugs, which were converted to norepinephrine in the brain, these mice were just as good at nest-building and related cognitive tests as normal mice. Direct examination of neurons in the hippocampus of the genetically altered mice showed that these cells responded well to norepinephrine.

Norepinephrine improved---helped---the cognitive ability of the mice, an improvement that was also noted at the cellular level. The "reversing deficits" headline is not exactly misleading, but a bit of a hasty over-generalization familiar to anyone who follows reporting about "the latest" in research, science, and anything biomedical about autism.

Having rather often weighed in on the problems of referring to autism as "reversible," I'm not inclined to turn this post, let alone this blog, into a space for discussions of the cans and can't-do-its of various "interventions" and "treatments" and understandings of autism. We certainly tried a number of such biomedical "treatments" for Charlie when he was much younger. Charlie gluten-free and casein-free (and supplement-filled) for some years and the mark of his being the former can be seen in his disinclination to eat many of the foods in the BAC cafeteria: Cereal and milk. French toast sticks. Mashed potatoes (with the off-limits butter!).

When I picked Charlie up, his teacher noted to me that he asked for corn and liked that, and that he's been asking for an apple, and wanting it to be sliced (as I do with his apples at home, only it's been a while since Charlie wanted to eat an apple at home). Thursday, "day 4," was--she noted---an "awesome" day. Around 11.30am, the classroom staff didn't place any new demands on Charlie. He's been requesting breaks and walks frequently after working at his desk; his teacher noted that she thinks this is a sign of his "awareness" that he can request such breaks when the room gets too loud or Charlie himself is frustrated.

I felt an internal "wow" on reading that in his notebook. Charlie was 7 when a speech therapist and his teacher first tried to teach him to ask for a "break" to leave the room when, well, it got too noisy and he got frustrated. He might ask for such a "break" once or twice successfully, but never consistently. We'd note that he would often ask when he was already so agitated that, even when outside the room, he was already very, very upset. Over time, the very word "break" started to acquire negative connotations for Charlie.

And it seems that, five years later, Charlie's learned to ask for that "break." And because the BAC is, well, big, there's always space for him to walk around in. There is a gym with a basketball court and, on the top level, a track. You can get a pretty good, short walk just by walking around the BAC grounds too, as Charlie and I did before school started; we've been leaving early and arriving up to 30 minutes before school starts---Charlie's been eager to get out and go, though he still had an initial frisson of hesitance getting out of the car.

As I was signing him out in the main office yesterday afternoon, I overheard a man asking about the BAC and if it was public. He noted that he had visited a certain private autism school (I had too). He asked a few more questions in an intense tone of voice, and with a similarly intense set to his jaw and shoulders.

Yeah, I think I know what he was feeling, that the best school for his child has to be found and his child has to have a place now and immediately, to give her or him the best chance possible for.....recovery?

The good life? 

A place to feel a bit more......at home---or just a place to get a new start?

A Sense of Direction

After I talked to the behaviorist (Charlie had art class; got upset for 10 minutes when asked to play Bingo around 11.30am, same time as yesterday; the behaviorist noted that one "behavior" a day is great and I told her we see it the same way at home: who doesn't get frustrated, mad, fed up with it all, ready to say the equivalent of "I've had it" at least one time a day?)----Charlie and I got in the white car and headed home. As we neared a certain busy intersection, Charlie started saying "this way" and then "that way."

"Right?" I asked him. "Right, yes," said Charlie. So right we went. A quick glance in the rear view mirror revealed him checking out the shops and other landmarks. "Straight?" I asked as we came to a traffic light. "Straight," responded Charlie, with careful pronunciation of his "r."

I had a feeling that Charlie was taking me on one of his bike routes with Jim, the one that goes over a certain bridge, and I was right, as the road we were on goes "straight" to it. We went up and over the bridge and then into a really busy area. "This way, this way," said Charlie, pointing. I knew home was "left" wards and that was the direction Charlie wanted to go in. 

 He really does know his way around. 

That's been the case since Charlie was very young. When he was not yet two years old (and not yet diagnosed with autism), he could always find our then-car (a forest green Saturn, the original one) in the mega-parking lots of Minnesota chain stores (Cub Foods in particular). He knew that going left not right out the door of our St. Paul duplex meant that he would not get to see two of his fascinations, a stone wall at the end of the block and, a couple of blocks away in a playground, a red spot of paint. Then Charlie was fixed on getting to some goal. Now he seems equally, if not more so, aware of how to get there; of the process. 

 After a late afternoon bike ride with Jim on the new urban route, Jim noted that, when he points or when he even simply looks towards oncoming traffic, Charlie looks that way too, and stops. Jim doesn't have to say a word.

And, based on Charlie assuming the role of navigator in the car, it seems he's transferred what he's learned about cars and traffic from riding his bike to riding in the car.

I can't resist saying it: He really is going places, and thanks to his own smarts. 

Yes yes, Charlie needs to be accompanied by someone else (at this point, us) when going anywhere. Yes we do know, hope, that someday he'll be able to manage with someone (completely trustworthy) else. But when we say, we go with him, we really mean it.

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As for why "behaviors" at approximately the same time every day: a link to Charlie's medications (he takes these when he wakes up, around 7am)? because 11.30am is one of those "witching hour" times (another for Charlie has long been 2-5pm) when his energy is at a lull? because (the behaviorist speculated) that was when he ate lunch at his old school, but not now? 

At his old school, "behaviors" happened at 11.30am, but also at other times of the school day. Needless to say, we'll be keeping an extra eye on Charlie around that time this weekend.

I do feel that, in a slow and as usual stumbling kind of way, we're all striking out in some new directions on this journey with Charlie.