How Old is Hallie?

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Lilypie Second Birthday tickers

Thursday, November 26, 2009


I think we're thankful every day for such wonderful kids who bring such joy to our lives (even if they also keep the producers of hair color in business, too), but we often don't take the time to stop and reflect on what we have and how grateful we are for it. So, even though it's pretty late, I just wanted to take a moment to reflect on all of the wonderful things that are happening around here and how thankful I am about them.

Hallie has been having a great week. Probably a lot of the 'off' stuff that we were seeing a couple of weeks ago was related to her coming down with a cold/fever, and not regression or anything ASD-related at all. This makes a lot of sense; I know that I don't function well and am out of sorts when I feel like crap (which I did this week, when I came down with my own cold/fever/laryngitis/sinus infection malady; let's hope Hallie isn't getting it). Anyway, once Hallie started feeling better, things really began coming together for her again.

Last Friday, Sharon and I had our first ever parent-teacher conference with Hallie's lead teacher, Ms. Kristen. I've gotten to know Kristen, as well as the other teachers, fairly well over the past five months and, of course, I'm in constant dialogue with Hallie's therapists, but this was our first sit down, official conference. Kristen had nothing but glowing things to say about Hallie: she finds her energetic (in an infectious, good way; when she comes in for her two afternoon days at 3:15, she appears to recharge the batteries of those kids who have been at school since early in the morning and whose energy is flagging); helpful (she loves to give out instruments to the other kids, collect trash, and is a masterful cleaner-upper); and polite. She also loves art and music and eagerly participates in story time, circle time, and all group activities. Apparently, her fine motor skills are improving and she's doing a ton of talking. While some of what she is saying is echolalic, this is true of several of the kids (who are not diagnosed with anything) and it's clear that Hallie comprehends and is following what's going on around her. She is also quite enamored of dramatic play (dress up) and is beginning to interact more with the other kids. She knows all of their names and greets them all by name, but she's now beginning to do more than this.

We know that the other kids really like her and that several of them ask after her each day, hoping that Hallie will be in class with them (she has an odd schedule which we adults find hard to follow; I can only imagine it's more difficult for the three year old set to recall which of Hallie's days are full days and which are part days).

Most importantly, Hallie is happy at school. She's adjusted really well, has not cried about going to school since at least some time in August and never wants to leave. Indeed, for the past week or so, whenever I come to pick her up, she happily shows me whatever toys she's been playing with and then sits back down to play some more.

Anyway, it was great to hear all of this. Now that Hallie is back to her normal self, we can see how good of a fit the YCCA is for her. That they emphasize music, art, and sensory activities and use those to teach academic skills seems great to us. Hallie has all of the academic stuff that she needs at this age down pat; we are thrilled that they are not drilling letters, numbers, reading, and such at school but instead focus on things like movement therapy, playing with textures, and teaching the kids a lot about music.

We think that all of this exposure to the social world of typical kids is really helping Hallie to advance her play skills. First, she is doing a lot more interacting with the other kids on the playground after school. When I picked her up last Friday, she asked to go to the playground (she's been doing this often) and of course I was thrilled. As usual, she swung a bit. But unlike in the past, when Hallie's made a beeline for the baby swings, this time she walked up to the 'big girl' swing and asked me to help her up. She then told me, "I swing on big girl swings!" and did just that. She's beginning to kick a bit, which is great, since I think her capacity to pump her legs is beginning to emerge.

Then, her friend Daria came over, and, after swinging a bit, asked Hallie to play with her. This time Hallie didn't ignore the request; she told me she was all done swinging and she happily joined Daria and Logan (a boy at her school) in a game of chase. She also went up to Logan and asked him if she could have one of his pretzels. Here are a couple of shots of the kids at play:

We're not just seeing progress in the area of playground skills, either. Hallie is also beginning to do a lot more real, functional, creative play. For example, last night she was building with her wooden blocks. Instead of just building a tower and knocking it down, over and over, Hallie built a couple of houses that looked like houses. I wish I had gotten a few shots of these. They were cool looking. Sharon, who is an architect, was quite impressed. Likewise, she's been using her Mr. Potato Head much more appropriately. Instead of having arms coming out of all of the holes, octopus-style, she made this lovely creature the other night:

Other than the fact that the guy was wearing lips as a cap, I'd say this was a pretty appropriate potato head.

Hallie's also been drawing with purpose, even if her creations don't really resemble what she says they are. She has been into Blues Clues lately, so I've given her one of my old notebooks. Tonight, she drew a couple of renderings of something that she called Spider Man and narrated her drawing for me as she made it. "Here are the eyes," she said, "and here is his nose and mouth. These are his legs. I draw Spiderman!" She was very proud of her drawing, and so was I.

But perhaps most important is that her pretend play skills are developing rapidly. Tonight, while Sharon was out standing in a really awful line at the UPS pick up center waiting to get a couple of packages, I was home with the two kids. Hallie grabbed one of her Lego vehicles, put two of her little figures in it, and started to drive it around. Sharon's backpack was on the floor in the living room, and Hallie had the vehicle drive up the side of the backpack, and said, "we're driving up the mountain!" Her vehicle then passed under the jumperoo and Hallie exclaimed, "we're driving through now!" It was good to see her creating a scenario for her little Lego people that was entirely unscripted; this was not something she had seen a character do on TV or anything like that. It was her own imagination that was in the drivers' seat.

This, a lot of dress up play (tonight Hallie was a doctor and she asked to listen to my heart; at other points this week she's been a "pretty princess" or a policeman) and some discussion of feelings (she turned to me tonight, while watching a segment of Elmo's World: The Great Outdoors that featured a lion and a bear, and said, "I'm scared; that's scaring me!") make it obvious to us that she is in the middle of a developmental spurt. We love it.

Food-wise, things have been going pretty well. Hallie is still not a big fan of eating because it distracts her from other, more preferred activities, but she's been enjoying some of what she's eating quite a lot. She was turned onto Cocoa Puffs by her cousin Adam, and has been munching them quite happily, asserting that they are "so yummy. Dee-li-cious!" And she is still in a toast phase, which is great. She also rather enjoyed several of the cookies I picked up at Isgro's in the Italian Market this week, though she would have preferred it had they been solid chocolate and not just dipped in chocolate.

Improved eating has led to improved growth: at today's checkup, Hallie was 32 lbs. 6 oz. and back at the 50th percentile for her age. Of course, she looks thin, but that's because she's shot up again and is now 39.25 inches (up from 38.5 inches), which is about the 75th percentile. And vomiting has stopped: we're now on day 245 and counting. What a difference this year is, relative to last year or the year before that.

Lea is doing great, too. She weighs in at 19 lbs and is 28 inches tall, which places her firmly at the 50th percentile for both. Her head is at the 75th percentile and is not much smaller than Hallie's (very small) head.

Lea is doing a lot of 'talking'; she is saying something that sounds an awful lot like "I got it!" (a phrase Hallie often uses) and "thank you". She is also trying to say "duck" and "teddy" and uses these words appropriately. When she is crying we hear something that sounds a lot like "mo-mm-y" but she's not really saying "mommy" or "mama" quite yet.

Lea has also learned to use her Fisher Price 'bubble gum' toy (where she hits a blue paddle to release the ball and turn on the music); loves her toy piano; and loves playing with the shakers and cymbals. And, basically, anything that Hallie does, Lea wants to do. She adores her sister and wants to emulate her every move.

Hallie feels the same way about Lea and the two kids often play together and crack each other up. Tonight, Hallie was on the couch and Lea signaled to me that she wanted to get on the couch, too. She climbed over to where Hallie was sitting, began to put her head in Hallie's lap, started playing with Hallie's hair, and gave her lots of hugs and playful slaps. Hallie thought it was hilarious. I thought it was sweet. Alas, I was unable to get a picture of the girls at play tonight, but did take this shot of them in the tub last night:

Given how crowded the Primo tub seems, I think we're going to have to just fill up the regular claw foot bathtub for the girls the next time the kids bathe together.

Anyway, that's it for now. Happy Thanksgiving, everyone, from our family to yours!

Saturday, November 21, 2009

Embracing the Craziness

I just spent fifteen minutes on the floor with Hallie and Lea ripping up pieces of paper (that in a former incarnation had stood in as some "Blue's Clues", replete with blue paw prints and all) and dumping them on the kids' heads. I'm pretty sure that you won't read about this sort of activity as a stimulating, engaging learning experience, but it epitomizes what we do when we "embrace the craziness," AKA practice Floortime/DIR.

Lea had been screaming non stop for a quarter of an hour because she's teething like mad. I was holding her on my shoulder while trying to get Hallie to eat something for dinner (tonight's goal: a half a piece of toast with fake butter. She had eaten the ends of a few fries, a lick of mini chocolate bundt cake, and a few veggie puffs designed for the newly-eating baby, but I don't consider that a decent dinner, despite the existence of the word 'veggie' in there. After all, those puffs have 25 calories for 75 of 'em and I can guarantee you that Hallie ate no more than 10).

So toast--the preferred food of the month--it was. But after three mini bites, Hallie put down the toast and got distracted by the TV (TV is our motivator for most things, alas). I paused the highly formulaic Wonder Pets episode and asked her to take another bite. But she moved on, and began to rip up some of the paper we'd used in our Blues Clues playing this morning. Try as I could, I could not get her attention. So what did I do? I took a page out of the Floortime book (so to speak) and began ripping up the paper with her. And then dumping it, confetti style, over the heads of both of the kids. Hallie instantly engaged with me and began dumping paper on my head, and on Lea's, too. She smiled wide, made great eye contact, and got re-engaged with me. And got her to eat three or four more bites of toast. So mini victory for me, and for Stanley Greenspan (the guru of Floortime).

Sometimes it is useful when I take my own advice. A week ago, Hallie's very excellent Special Instructor called me to ask me what I would do to re-engage Hallie when she seems disengaged. All I could think of at the moment was that A. should follow Hallie's lead and not worry about whether Hallie was talking. Step it down a notch, I said. Go back to basic sensory activities when pretend play seems beyond Hallie's reach. This is all the stuff I've learned in Floortime. Our goal is for Hallie to engage at level 6, developmentally and Greenspan-ly speaking. This level is all about complex problem solving. But most of the time, level 6, which is typical of 3-4 year olds, is beyond Hallie's reach. She is most comfortable at levels 3 and 4 and sometimes reaches into level 5. But she gets easily overwhelmed and when she is overwhelmed, we need to step it down a notch. Any engagement is better than no engagement. So whatever cartwheels you have to turn, or whatever confetti you need to transform paper into, to get her engaged is worth it. And it works, it really works.

Friday, November 20, 2009

Say "AAAH!": A Post About Dentistry and Medicaid

Two weeks ago, I took Hallie in to the Pediatric Dental Clinic run by CHOP at the University of Pennsylvania Dental School for her six month check up. I did this with some trepidation; Hallie is no big fan of dental work and is pretty averse to having anyone put stuff in her mouth -- this isn't just an issue of food. Who can blame her, really; she has a history of doctors shoving endotracheal tubes; oral gastric feeding tubes; small cameras; and a bunch of other medical devices into her mouth and down her throat and a very long history of plenty of stuff coming up out of her that should technically stay in her stomach.

On top of this, we have considerable mommy guilt about Hallie still being on the bottle and still falling asleep with it in her mouth. The dental attending whom we saw at CHOP/Penn last winter was unforgiving about this, to say the least, and put the blame squarely on our shoulders. In no uncertain terms, she accused us of being irresponsible, negligent, and even abusive parents who had done their daughter a serious disservice by not putting a G-tube into her tummy instead. When I plead my case, it fell on deaf ears. Thankfully, the dentist who actually performed Hallie's dental surgery (a thorough cleaning, x-rays, and an extraction) last February was far more understanding of our location between a rock and a hard place and wasn't into moralizing or reprimanding us. But still the mommy guilt lingers on: even if we know that Hallie can grow, or at least hold her own weight wise, by still consuming most of her nutrients from a bottle and that she went on a full food strike when we tried to remove it from her this past winter, and even if we know that we're sort of given a pass by virtue of the disabilities that we wish she did not have, it doesn't help to walk around thinking that we are harming Hallie, or at least her teeth, by not removing the offending bottle.

In the intervening months between last February and now, we've managed to get Hallie used to--and even fond of--brushing her teeth. At first, we just let her chew on the brush and put a bit of fluoride toothpaste on it for her. As it turns out, she much prefers our cinnamon flavored Crest to the bubble gum kid's variety emblazoned with the likeness of Dora the Explorer or Sponge Bob Squarepants. We then started to brush for her, and, over time, she began to open her mouth wider and wider for me and let me do an increasingly thorough job. She's now at the point where she will sort of brush her own teeth (though my efforts are more effective) and will ask to brush her teeth multiple times a day. She's even gotten good at spitting water out after she's done (indeed, this activity is one she finds extremely appealing). I haven't managed to get her used to swishing around fluoride rinse but that's something we'll continue to work on with Hallie. So, at least from the perspective of oral hygiene, we knew that Hallie's mouth is in a better place now than it was a year ago. Still, the nagging feeling that we're ruining her teeth with the bottle lingered on.

As it turns out, we were right and the Wicked Witch Dentist of West Philadelphia was very wrong: it wasn't the bottle that was eroding Hallie's enamel but the chronic regurgitation. Now that she vomits infrequently, she's doing a whole lot less damage to her teeth. (We're now at 239 days without vomit, and counting, for 2009). As it turns out, her mouth is in great shape and there has been no further discernible damage to her teeth this year.

But I'm getting a bit ahead of myself here.

To prepare Hallie for the visit to the dentist, we began by telling her social stories. I let her know that a dentist was going to take mirror, put it in Hallie's mouth, and use a big shiny light to see her teeth. Hallie and I looked at her teeth in the mirror and practiced 'saying Ah!' and opening wide. I told her that she would have to lie down on a very big chair and that the dentist would look and then brush her teeth for her and that it would not be fun but that it also would not hurt. We went over this scenario for a few days before the big event.

When we got into the dental office, Hallie was very cooperative, at least at first. The dental student showed her the mirror and allowed Hallie to play with it, look in it, and place it in her own mouth.

Matters became a bit dicier when the dentist actually had to reach in and have her own look around inside Hallie's mouth. This elicited some tears, but not too many:

Hallie did work hard at "being brave" and held my hand the entire time.

Matters got a bit worse when the dentist brushed her teeth for her, but not too bad. Since we are using a regular toothbrush at home, the dentist decided to use a regular one to do the cleaning, but showed her the 'tickle brush' (the electric version typically used for cleaning) and told her we would be using this one next time. We'll pick up a battery operated toothbrush to use at home in anticipation of this next visit, I think.

The only time things got really dicey was when they had to paint Hallie's teeth with fluoride for her treatment. Hallie's not a big fan of bubble gum flavored stuff, and, besides, the fluoride no doubt tasted more medicinal than bubble gum would have, so there was some gagging but no heaving during this procedure and we escaped the office in the same clothing in which we arrived and without leaving a pool of vomit in our wake. That was a pretty major victory, as far as I am concerned.

Unfortunately, upon leaving the practice area and going to check out, I was delivered the news that Hallie's insurance through Medical Assistance (Medicaid) had been canceled. Having to pay out of pocket and knowing that I was about to face a huge battle for reinstatement left me with a bad taste in my mouth.

(Note: it's not like we don't have private dental insurance for Hallie; in fact, we have her double insured for dentistry under our own policies. It's just that the CHOP Dental Clinic, which serves only those who are Special Needs or poor, only accepts Medical Assistance. And while there are pediatric dentists who do take our insurance, we were pretty badly turned off by the biggest Center City practice and unable to locate another private practice that was good at treating special needs kids locally).

By the time we got back in the car to go home, I had confirmed with the HMO that administers our Medical Assistance plan for Hallie that her insurance had, indeed, been terminated, effective October 31, 2009. This meant that bills for all the therapies that she had received during the week (Floortime/DIR; OT; PT; Speech; Special Instruction; and her Personal Care Assistant) were going to go unpaid. Even more significantly, it meant that all of these therapies were in jeopardy and might require suspension while I worked out this kink in the system. The cost of these therapies is probably in the area of a thousand dollars a week. I can't say for sure how much the total is because we never see bills; up until this point, they would just get paid. The only thing we ever needed to deal with was getting the proper referrals and prescriptions and calling to make sure that Medicaid, as our secondary insurance for Hallie, got billed for co-pays. But there is no doubt that the therapies are expensive and that having to cover them all while we worked out this problem would have been impossible for us to do; Hallie's therapy costs exceed our mortgage payment by about 200% and juggling both would have involved bankrupting ourselves and maxing out our credit cards.

So I needed to step into high gear and solve this crisis. Which is precisely what I did the second I got home. First, I went to this website put together by the Pennsylvania Health Law Project to bone up on the procedures for certifying that Hallie falls under PA Loophole 95, which allows disabled children to be covered by Medicaid in the state of Pennsylvania regardless of parental income. Then I got on the phone with my contact over at the Disability Rights Network of Pennsylvania to explain what had happened and to make sure that I was handling matters correctly. Both agreed that Hallie should not have been dropped from the Medicaid rosters in Pennsylvania; instead, I was supposed to have been provided with a written request for a review of her status to determine whether she was disabled and prior written notice that afforded me a ten day period to appeal any effort to disenroll her from Medicaid. We never received any of those things. Calling the local Medicaid office proved useless since it was impossible to get a live caseworker on the phone, let alone a person who knew anything about the provisions governing disabled children.

Thus, I spent the better part of last Thursday evening assembling all the documentation that we might need to re-apply for Medicaid for Hallie and filling out the forms at the Department of Public Welfare's website. And on Friday morning, I high tailed it down to the local DPW office to submit all of this stuff in person. Fortunately, we were in the midst of a transit strike in Philadelphia. While this made my life more miserable since it entailed a long walk back into Center City from the DPW office (happily, Sharon dropped me off there on the way to work), it meant that the office was less crowded than it typically is and I was able to get in and out of there in under four hours. And it is a good thing I went in person; not only did it mean not having to risk losing original copies of Hallie's birth certificate and Social Security card, but it also meant that I didn't make needless errors on the extraordinarily confusing (even for me) paperwork that would have resulted in the whole thing being bounced back to us for completion.

So I got the paperwork in, but then the question became: how in the world do I fast track it? That's where my contacts over at the Disability Rights Network and Health Law Project really came in handy. I felt like it was a pretty major victory that we managed to get Hallie reinstated for Medicaid in two full working days: by early Tuesday morning, her case was provisionally approved and her bills were being paid again. It was kind of a no-brainer: Pennsylvania is a very liberal state when it comes to insuring children generally and covering the medical costs of those with disabilities in particular. Both Hallie's global developmental delays and her diagnosis of Autism Spectrum Disorder, for which we have corroborating paperwork, easily qualifies her for coverage. Sadly, this is not the case in many places in this country. But, what really helps is that I am very familiar with the law and with where one must go to find help in making sure that it is implemented correctly. Trying to get this done without intercessors who knew how to contact the proper people within DPW and actually had sufficient clout to get them on the phone, make them pull up Hallie's records and review them on the spot, and then authorize a status change, retroactive to October 31st, would have been, as Hallie likes to put it, "very too hard."

So, all in all, it was a minor hassle and I still have to figure out how to get our out-of-pocket dental expenses reimbursed, but all's well that ends well. And, most importantly, Hallie's teeth are fine and we don't have to put her under for another dental surgery any time soon. But I definitely could have done without the drama and the wasted time and the crisis mode into which this little event thrust us.

Monday, November 16, 2009

Meeting Ralph

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Last weekend, we took Hallie, Lea, their brother Jake, and our friend Eliza Grace to see Ralph's World at the World Cafe's Peanut Butter and Jam kids' series. Hallie became quite enamored of Ralph's World this summer when her preschool class learned (and later performed) two of his classic songs, "Happy Lemons" and "Surfin' in My Imagination" (Hallie calls the former "Lemonade Song" and the latter "Surfing Song." Hallie gave Jake a CD/DVD set of some of Ralph Covert's classic songs and we later purchased her a copy for her own enjoyment. This has gotten a lot of airplay at our house and Hallie was suitably thrilled to be able to catch Ralph in person.

Ralph was greeting the kids as we arrived and Hallie got a nice big hug from him (and confirmation that he was going to be playing the "Surfing Song."

Hallie, Eliza, Jake, and Lea all had a ton of fun during the concert. Unfortunately, some pretty silly parents (that would be us) forgot our camera at home and, as it turns out, the iPhone does not take great concert shots (unless you like the quasi psychedelic). Hence, we'll re-direct you to Eliza's blog to see just how much fun the kids had.

We did get one sort of OK picture of Hallie, Lea, and Jake all in the same frame:

Notice the intense look on Hallie's face. As it turns out, she was fairly subdued (when not bopping with Eliza) not only because she was coming down with some sort of preschool crud (perhaps the flu, perhaps not...all we know is that she ran a fever from Monday through Wednesday of last week, recovered on Thursday, and was back to her usual fun self by Friday). She was also really taking in the whole experience. When I picked her up from school today, a full eight days after the event, she was still talking about the concert. At first I had no idea what she meant when she told me, "I go to concert." I asked her aide, F., whether the kids were planning another concert and whether they had rehearsed a song today. F. responded that they had had music, as usual, but that nothing special was in the works. Hallie apparently understood my confusion and elaborated, "I see Dinosaur Song. I see Puppy Song." And then she began to sing the lyrics to the 'Puppy Song' for me, just in case I still had no idea what she was talking about. Anyway, I totally got it and told her aide what was going on. Hallie smiled very broadly in response to what I said to F.

As is the case with most songs that Hallie loves, she knows these lyrics by heart. She also can replicate basic choreographic moves that she's seen performed in person or on television. Her mastery of song and dance is rather impressive. Now, were it not for the fact that the kid has a paralyzed vocal cord that makes her voice little and raspy and some delayed gross motor skills that impact her capacity to dance, I'd say that she could easily aspire to a career in theater and dance. Even given her limitations, I'm not sure I'm going to rule this out just yet. The kid has music in her genes (literally, since her donor's family is quite musical, and professionally so) and clearly loves music and performance.

This all points to something else that's quite important: apparently Hallie does have some pragmatic language skills, after all. We just all need to know her well enough to provide the context for her, and she'll let us know what she's thinking.

On a related, but different topic: Hallie has some cute new phrases that she likes to use. Among our favorites (and, by the way, she seems to be getting what we mean when we say 'favorite' since she now uses the word herself) is: "That's very too hard." She uses it absolutely appropriately, like when she cannot get a zipper started, even after she tries and tries to do so.

Sometimes it's pretty hard to understand what Hallie means, but with some work, I'm beginning to find that it is rarely 'very too hard.'

Nine and a Half Months: The Lea Update

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Lea continues to amaze us. She is a very interactive little girl who likes to get into all things, and especially all things Hallie. This has added to the drama in our home, and the frequency with which the words, "No, Lea! NO!" are uttered around these here parts.

At 9.5 months, Lea has a bunch of emergent words:
  1. Uh-Oh
  2. Yay!
  3. Hi!
  4. Teddy
  5. Bye!
  6. and perhaps "Mommy!" (she certainly whines 'ma-ma-ma-mee' when she wants one of us--usually Sharon--when we've left the room or have failed to attend to her quickly enough).
Lea is also babbling a lot and chasing after toys (a wiffle ball, a drumstick, and a teddy bear being among her favorite, but cars are also a big draw for her). She can let go and remain standing until she remembers that she has let go of whatever surface, at which point she falls on her bum.

Lea also has at least six teeth, and we'd venture to say that four more are emerging. Hence, she has spent many sleepless nights awake (I guess that's a redundancy; in any event she is often up at some subset of 1am - 5am, which makes the rest of us quite cranky).

Anyway, we're thoroughly enjoying Lea, who is thoroughly cute, despite our sleeplessness.

Wednesday, November 11, 2009

Halloween Season 2009

One of the wonderful things about the fall/winter holiday season is that the holidays fall in such proximity to one another that it prevents those of us bloggers prone to bouts of procrastination from doing so indefinitely. Anyway, that's the motivator for finally getting this post up and running and, in contrast to a couple of the most recent posts, this one is going to be heavy on the pictures and light on the commentary.

Halloween season got off to a roaring start with a visit to the Please Touch Museum for their members-only Halloween event. We went at the gracious invitation of Hallie's friend, Alex, who was extremely excited to have her little buddy with her for the occasion. The museum was packed with kids and, at first, Hallie found the whole thing a bit overwhelming (and overstimulating). But, after a bit of adjustment, Hallie settled right in. She began her visit with a fun carousel ride, which was of course fitting given her costume choice:

Then, after some time at a few of her favorite exhibits, Hallie, Sharon, and Alex and her mom, Sheila took in a puppet show. We weren't quite sure whether Hallie would enjoy the actual show as much as she liked the idea of it, but, as it turns out, she had a splendid time and talked about the puppet show for days. The characters included a pirate, and that's always a good thing. Hallie loves pirates and likes to walk around covering one eye with her hand or a spoon and saying "Ar Matey!" while holding her telescope up to the 'working' eye. I think there may have been a duck involved, too. I'm not sure because I was speed-walking Lea through the museum while she napped. Anyway, the puppet show was grand and then we repaired to the Please Eat cafe where we grabbed a dinner of pizza, apples, and juice boxes. Hallie did eat some, but the highlight of her evening meal was collecting the trash--all of ours and some of other patrons, too--and throwing it out. It was nice that she felt so comfortable walking up to strangers and asking them if she could toss out their garbage.

The next day we paid a visit to the Johnson Farm with Hallie's preschool. I don't know why I thought this--perhaps it was the homeyness of the name?--but I thought we were going to be going to a relatively small working farm with a little pumpkin patch and a tiny petting zoo, all scaled to the size of your average three to five year old. Instead, we got this. I should have known that any locale with a spiffy website and that sells its pies online would be the opposite of homey. The place was buzzing--with people and bees--which makes some great sense the weekend prior to Halloween. The huge hayrides were very full; the pumpkin patch was enormous; and there was a performance area set up that featured locale country acts; 4H dance troupes and the like.

It was also very very hard to find the other members of our group (we were, admittedly, a bit late, as is par for the course with us. The part of Medford, NJ where the farm is located is a great deal further than we thought and we needed to stop and pick up a pizza for Hallie's lunch). We did finally meet up with our fellow YCCAers--a few on the hayride and in the pumpkin patch and more at lunch time.

Anyway, the experience was pretty overwhelming for us adults, but Hallie seemed to have a pretty good time.

Here are the girls on the hayride en route to the pumpkin patch:

Here's Lea in the pumpkin patch:

And Hallie:

Here's Hallie trudging alongside Sharon, who was in search of the perfect pumpkins (more on this later). This took entirely too long and the kids were all a bit antsy. It didn't help that Hallie kept tripping over the pumpkin vines on the ground.

You can get a sense of just how big the pumpkin patch was from this photo.

And here they are on the way back:

After lunch, Hallie was excited about jumping in the bouncy house (she LOVES these):

And she proved just as excited about visiting the animals on the farm. I'm pretty sure, given how many times Hallie returned for large handfuls of corn, that the pigs were quite overfed that day:

She also found the playground area to be pretty grand and had a wonderful time sliding through the PVC piping tunnel that they had set up for these purposes:

When we got home, it became abundantly clear to me that all that time that Sharon had spent in the pumpkin patch assessing the individual merits of each pumpkin really paid off. You see, she was on a mission. A couple of years ago, Aunt Laura had given us pumpkin decorations that she had made when the two oldest cousins, Sarah and Megan, were little. Even though Megan grew up not watching Sesame Street (since Sarah was too old for the show by the time Megan came around) and hence thought that Big Bird was in fact Big Yellow Chicken, she definitely knew who these two guys were:

Hallie had a blast making them. We were very impressed at how much power of concentration and attention she brought to this art project. School is really paying off in this respect. Hallie was very proud of the final project. She was proud to pose the little finger puppets in front of their pumpkin likenesses:

Lea also got in on the action:

I think this is a fitting tribute to Sesame Street on its 40th birthday, don't you?

The next week brought the YCCA Halloween parade (see my Pumpkinhenge post above for more details on this...) and the main event, the big day itself.

We were thrilled because our friends Anne, Eliza Grace, and Bessie (Anne's mom and Eliza's Nana) came down to join in the festivities.

When Eliza decided at the last minute to jettison her Native American garb for that of a ballerina, Hallie followed suit. Soon, our two little dancers and their entourage were ready to hit the neighborhood:

The girls both proved to be very quick adopters of the trick-or-treating ritual:

Here's a nice shot of Eliza and her Nana trick-or-treating:

While collecting candy was definitely fun, what's even greater about Halloween in our neighborhood is that there's this one block where the residents close off the entire street and everyone, regardless of whether they have kids of trick-or-treating age, gets into the holiday spirit. Not only do they give out vast quantities of candy, but they also set up craft tables where kids can decorate their own gourds; color pumpkin or witch or similar cut outs with markers; watch as their balloon animal of choice is blown and twisted; or oversee the production of pom-pom spiders. Our girls had a blast doing all of these things:

The whole group had a grand time and we got home to our place in the nick of time to avoid a major downpour. After a nice visit, our friends headed back to New Jersey.

The next day, Hallie sampled some of her loot. It turns out that, though she doesn't eat much at one sitting, she very much enjoys chocolate (Hershey's bars, Kit Kats, and Reese's Peanut Butter Cups all pass muster, even if she takes a few small bites of each before moving on, and Hallie's fairly willing to sample--or at least open--anything that comes in a wrapper that might pass for junk food). She also finds cheese balls (but apparently not cheese puff sticks) quite delicious and has a fondness for bats-and-jacks pretzels. Now if you could only pass off green beans as junk food by giving it a pretty colored paper wrapper...

Anyway, that about sums up our Halloween fortnight!!! But even though the holiday is over, costume-, pretend-play and some candy eating live on (though not much this week, since Hallie's been home sick and not feeling up to eating much; probably it's H1N1 but we'll never really know for sure. Whatever it is, the fever is down and has been gone a whole day now and we've gotten away without any respiratory issues whatsoever, so we're pretty happy right now. Just two days of vomit, likely due to antibiotics to treat a suspected ear infection. So we're now up to 230 days without vomit this year for those of you still counting).

Saturday, November 7, 2009

Autism as a Spectrum

I still owe the blogosphere a Halloween post, but, before my mind becomes more addled than it already is, I just wanted to get some thoughts down on virtual paper. (Yes, I am posting at 4am again. We can attribute this to Lea's teething which proceeds full force and her mixed-up crazy lack of schedule).

On Tuesday, the New York Times published an interesting article entitled, "A Powerful Diagnosis; A Vanishing Identity" which I found very thought-provoking, particularly in light of some of my recent observations about Hallie and her development. The gist of the article is that the working group that is evaluating autism and other neurodevelopmental disorders for the upcoming revision of the DSM (Diagnostic and Statistical Manual)-V have found that there is no clear-cut clinical distinction between those who are diagnosed with mild (or high functioning) autism, PDD-NOS, and Asperger's Syndrome. They've also noticed that diagnoses morph over time; lots of kids, for example, start out with the PDD-NOS label during the toddler and preschool years but end up in the High Functioning Autism or Asperger's categories once they are in third grade or so and it becomes clear to observers what their functional level in terms of capacity to do school work, form relationships, use social and pragmatic language etc really is. So, instead of using these diagnostic terms, the DSM working group has chosen to focus on the core neurodevelopmental differences that mark everyone on the spectrum, such as problems with joint attention and social engagement and deficits in the area of communication/use of social and pragmatic language, and also give some space to the other health problems that those on the ASD also have, such as sensory issues, anxiety and attentional disorders, GI problems, food allergies, and seizure activity.

This is not a bad idea, but I can totally see how it might be controversial: Asperger's Syndrome has constituted a core identity position for lots of people in our culture and you can't just strip it away and tell Aspies that their identity no longer exists. And I think this change would lead a lot of people not to have their kids evaluated because, in our society, having a diagnosis of PDD-NOS or Asperger's Syndrome seems a whole lot less scary and is probably a great deal less stigmatizing than a diagnosis of Autism. (It's a whole heck of a lot better to be lumped in with Temple Grandin and, presumptively, Thomas Alva Edison or Albert Einstein than it is to be deemed to resemble Dustin Hoffman's character in Rain Man).

I think these are very valid points (heck, I study identity for my 'real' job when I am not raising the kids and taking charge of Hallie's complicated medical/therapeutic/and now insurance issues). But I don't really want to get into all of this.

What I do want to talk about is Hallie and how getting to know her and the issues that she confronts on a daily basis suggests to me that the working group on autism's perspective seems to be on target. In other words, as I watch Hallie grow and become more attuned to her neuroatypical (is that even a word? it should be) development, autism begins to look more and more like a spectrum and those sub-categories like PDD-NOS and Asperger's seem to hold a whole lot less water. Indeed, terms like "high functioning" or "PDD-NOS" or "Asperger's" may lead observers/teachers/parents to take the diagnosis a whole lot less seriously than is warranted; provide fewer services to the child who is, after all, "high functioning"; and lead to a romanticization of a label that may not be all that helpful in the end to the kid who is having trouble functioning in the world in which s/he lives.

1. Does language/being verbal matter?

Sure it does. I think we'd be terribly distraught were Hallie not yet speaking. Indeed, we don't have too far to reach into the past to summon up memories of the panic that we felt before Hallie did acquire speech. Hallie was a very late talker who did no babbling whatsoever (just some vowel sounds and even those were far and few between) and who went through over a year of speech therapy before language emerged, finally, some time around age 2. I don't think I spent a single day without googling terms like "apraxia", "late talker", etc back then. I read everything that I could; we tried a variety of biomedical and dietary interventions (Omega 3-6-9s; gluten-free/casein-free diets; magnesium); we invested lots of money in purchasing materials to teach Hallie (and us) American Sign Language (this was a great investment, by the way); and we took Hallie from specialist to specialist, went through numerous speech evaluations, and tried a whole lot of different therapeutic tactics. None of these produced speech, really, until we began to address Hallie's sensory needs, but more on those later.

Even once Hallie did begin to talk, her language remained sparse up until this past winter (about age 2.75) when it took off in terms of the number of words that she spoke. These days, however, she talks A LOT. She is constantly babbling, making demands on us, and, most prevalently, repeating sentences or parts thereof in what is classically known as echolalia (most of her echolalia is immediate--she'll repeat something she sees on TV or that we say to her, but some of it is becoming delayed--she'll repeat relatively short scripts that she has memorized).

But the issue here is not that she has a problem speaking--even though her little voice is raspy due to vocal cord paralysis, she can talk. The question is: can she communicate? And that's teh core autism issue that is our biggest problem, I think (though this problem clearly goes hand in hand with all the rest of the stuff that constitutes the spectrum). Hallie has very little pragmatic language. The way in which she communicates tends to be stereotyped (she learns a script like "Hi, X" or "Bye, X, See you Later!" or "Are you OK? I'm Alright" that is accompanied by fake falling) and, while she tends to use these in appropriate situations, she varies very little from the script. She doesn't have the capacity to communicate in a regular back-and-forth conversational manner with peers or adults. She can't answer questions easily, even when given a choice; has trouble reading body language and often responds to it inappropriately (so she might, for example, laugh when her sister is crying or we are angry with her); finds abstract concepts like emotions very hard to grasp and prefers to label concrete objects for us; probably has a lot of problems following narratives, especially when listening to them being read aloud when they are not accompanied by visual stimuli, even though she understands the individual words of which these narratives are composed; etc. All of this makes it hard for her to organize her own thoughts and get her own point across and, consequently, even when she does have something to say, she might stammer to get it out.

Now, that doesn't mean that we don't have a lot to work with where Hallie's linguistic potential is concerned. She has a fantastic vocabulary; is enamored of words, letters, and books; has a phenomenal memory particularly for visual stuff; and is a quick study. Oddly enough, the kind of echolalia that she manifests is, in itself a good sign. As Hallie talks more and more, she seems to be modifying her echolalia so that, while it is still scripted, she is using those scripts pretty appropriately and in a way that is individualized to the circumstances. It's kind of like she tests out these scripts by echoing them back to the TV or us and then practices them for days until she feels confident enough to use them publicly. Thus, we often here things from Hallie a good two weeks to a month before she uses similar constructions at preschool. Hallie is lacking in the department of self-confidence (we are convinced that she knows that she is different from her peers) and has an excessive degree of anxiety, particularly around social communication) and practicing her scripts a lot appears to allay some of these problems. This post from one of the autism blogs that I read sums up this phenomenon nicely.

As Hallie's language has begun to explode, it's also become abundantly clear to me that she uses the vast majority of her words and sentences to label things in admittedly more sophisticated ways ("It's a big orange tiger. Tiger says 'roar'!") or make demands on us ("I want a bigger circle icey!"). It's great that she's telling us stuff and expressing her needs, but one thing that is missing from Hallie's speech is an emotional component. Her language, like that of most kids on the spectrum who can speak/sign is imperative rather than declarative. Declarative language, as the mom who wrote this post put it, is aimed at transmitting feeling and ideas and not designed to get some sort of response. So, for example, when one says "What a beautiful day it is today. It's so warm and sunny outside and feels just like spring," one is using declarative language. It's aim is to share your perceptions with the people around you and, in so doing, make an emotional connection with them. Much of our daily conversation with friends is in the declarative form. In contrast, it's hard to form a nice human bond if all you are doing is barking orders at them ("Give me a piece of paper! I want a red crayon, please! Now I want the blocks!" aren't really conversation starters.)

The problem is: how does a parent/caregiver/teacher help a kid for whom 9o% of speech aimed at others (as opposed to scripted repeated phrases) get to the point where she expresses her observations of the universe in a way that gets a conversation and, with it a human bond, going? The one thing that others have tried that that we are working on now with Hallie is getting her to express her feelings. We hope that by modeling and using emotive language with her, where we talk about how we are feeling and why we are feeling this way, we can help her make connections between what she is feeling and why she is feeling that way (because she does feel; she just doesn't know how to express and communicate these feelings and that's part of what frustrates her). A simple case in point: yesterday in the bathtub, Hallie asked me to spray some cherry-scented (ugh!) Elmo shaving cream on the side of the tub. I asked her 'why do you want me to do this?' which is not a question she could answer (she has yet to acquire the almighty "why?" that is the bane of all preschoolers' parents' existence and would bring joy to my own ears.) Since I knew she could not answer this question, I helped provide the answer to her: "because you like it! It makes you happy!" Hallie understands 'like' and 'dislike' on a visceral level but has not expressed liking or disliking anything or anyone in a linguistic form. Likewise, she can identify a happy face (it has a smile on it) and even make one on demand, but she doesn't quite link the feeling that she has of joy or satisfaction (and I know that she feels joy; just watch her when she swings or bounces and you know she is full of glee) with the abstract word "happy." But concretizing this for her---linking the joy of playing in the shaving cream with the concept 'happy' and helping her realize that the things she likes make her feel happy and then providing her with a script helped. We did this exercise several times in the tub with the shaving cream (kind of like an ABA light exercise, in my mind) and then, later on in the evening, we did some more stuff that she liked and made her happy and substituted the new activity for the shaving cream and she repeated her new script, "I want X...because it makes me happy!" This morning, it was clear that she had internalized the lesson, at least to some degree, because she began to generalize this a bit further. I did the same thing with the concept 'scary': we visited the dentist yesterday, and Hallie always finds this scary but has never had the word for this. We talked about the appointment in advance, while we were there, and after we got home. For the first time ever, Hallie expressed to me that she was scared (she actually said "I little scared" when I asked her how the dentist made me feel); then again, this morning, she told me that "big animals are scary!" Now, among the preschool set, saying something like "big animals are scary" really could be the beginning of a very fun conversation.

So there is clearly hope there when it comes to the notion of pragmatic language acquisition but the point that I'd like to underscore is that none of this comes naturally to Hallie, who by all accounts has above-average intelligence and is likely going to end up as an Asperger's kid if the DSM-V doesn't change its approach to diagnosing ASD. It's the inability or impaired ability to use pragmatic language that seems to me to be a defining characteristic of the spectrum. Some have it worse than others, to be sure, but this is one of those things that separates folks on the spectrum from their neurotypical peers and, no matter how much ABA and Floortime and other therapies these kids get, pragmatic language on some level remains a struggle for them.

Why this is important should be fairly obvious: it's hard to form relationships with people if you cannot engage in meaningful spontaneous conversation with them; if you cannot understand their body language and cues; and if you have trouble with emotions. And that brings me to the second issue that seems to affect people on the spectrum, pretty much across the board:

2. Joint Engagement.

Again, there's a spectrum here. Some folks with autism demonstrate little to no capacity for this; others are fairly well engaged with the people in their universe but their engagement seems a bit quirky or eccentric. I'd guess that Hallie falls somewhere in the middle. Her eye contact sucks. There's no way around that. She would prefer to avert her gaze than to look you in the eye and I suspect that looking people in the eye is typically rather painful -- at least emotionally -- for Hallie because visual stimuli are so potent and so distracting to her and because she has a lot of problems organizing her sensory system. The times when she is best able to make and sustain eye contact is when she is engaged in sensory-regulating activities (like bouncing; having pillows and other soft objects thrown on her; being tossed up in the air; jumping; or playing music etc). This is because her sensory system is so out of whack and she requires a ton of proprioceptive and vestibular input to know where her body is in the universe and get herself back into equilibrium. So, if you give her this input, you can achieve joint attention and engagement (of which eye contact is a manifestation). Once you have that, you can build on the engagement to reach new levels of emotional interaction and give-and-take kinds of communication (be it verbal or gestural). If those new activities that are more sophisticated get to be too much for Hallie, she shuts down because she is overwhelmed and you need to retreat to simpler sensory-regulating activities (like tossing pillows or balls at her) to help her re-regulate herself. And sometimes those work great and other times, she is so overwhelmed that she needs to retreat for a bit before she can reengage with the people in her universe. Getting a handle on all of this is one of the most important things that we have learned from Floortime/DIR therapy. And, hopefully, over time, Hallie will learn to seek out less dramatic means of self-regulation and will demonstrate more emotional and developmental competence that will make it possible for her to stay engaged longer and in more sophisticated ways (and this will help build the blocks to logical thinking, effective executive motor planning, and the like).

The extent of Hallie's problems with joint attention/engagement really only became clear to us once Lea came into her own as a little person. Watching Lea engage with us and her universe has been a real eye-opener. For one, Lea prefers people to objects/toys. She uses her social smile and excellent eye contact to achieve a bond with me when I walk into the room (and she seems to know immediately that I'm there) and begins to flirt. She'll then do some sort of motor activity--bang some toys together, bang on a table--and anticipate or even demand that we mimic her action. This will then lead to a whole stream of 'circles of communication' that are accompanied by sustained eye contact, lots of smiling, and usually some noises/babbling. It's like a whole baby conversation and is hugely fulfilling. We didn't really have any of this with Hallie and, like pragmatic language, eye contact and joint attention did not naturally enter into Hallie's repertoire. She always preferred toys to people and still does. The inanimate world is the world she enjoys labeling and showing us. Indeed, there's a relationship between her lack of pragmatic language (her tendency to label rather than communicate) and her lack of joint attention.

Some day this labeling may morph into monologues on her favorite subjects (which is very indicative of those diagnosed with Asperger's) but regardless of whether she ever achieves the kind of verbal fluency that Aspies usually have, the core problem remains the same.

3. Sensory Dysfunction's place in the spectrum's trifecta.

A while back I wrote a long post on sensory integration disorder, so I am not going to repeat all of it here again. But the crux of the matter is that people on the spectrum seem to be out of kilter, each in his or her own way, where sensory issues are concerned. They either are over-responsive and find sensations--like noises, tastes, smells--so overwhelming that they cannot function in the presence of them; under-responsive ('ho-hum') about everything and need way more sensory information before they can respond to their environment; or some mix of the two.

That's what Hallie is like---she hears and sees so much and so well but has trouble hierarchizing oral data to glean from it the pertinent information that she needs to act; that's why she gets so distracted so easily. Visual cues, when clear and forceful enough (like the TV she loves and I have grown to hate, but also like the written word that I cannot help but love), provide much more organizing data to her and allow her to learn better. That's why we're incorporating a visual schedule into her repertoire that will allow her to anticipate the activities that await her during the school day and help her organize her life around them.

She obviously needs much more proprioceptive input in order to pay attention and function: if her feet don't touch the floor while sitting in a chair, she fidgets and needs to move around; a foot stool definitely helps to sit still longer. Her OT at school has also brought in a couple of different weighted vests to see if they help her pay attention to what's going on in the classroom during story time and circle time. And it's pretty obvious to me that, as we transition to a more formal school setting that requires her to sit at a desk and perform fairly sophisticated activities, she will require various adaptations and accommodations to her environment. We just don't quite know what these are right now.

And Hallie, obviously, also has her aversions. Most food falls under this category for her, but so does having messy hands (she will do some messy activities for short periods of time, but once she realizes that her hands are messy or greasy or whatever, she demands a wipe or needs to wash up), having her hair washed, and stuff of that nature.

Occupational therapy also really helps kids with sensory issues (regardless of whether they are on the spectrum), so we're looking forward to beginning this privately again some time this winter. What we do in OT helps us come up with ideas about what we can do differently at home and at school.

We all have our sensory likes and dislikes and most of us fidget and squirm to some extent when forced to sit for long periods of time at a desk. Some of us do better at auditory learning (that would be me) and some of us are much more effective visual learners (that would be Sharon). But the key issue is that us neurotypical types tend to self-regulate pretty well. We often do this without thinking about it: we might chew the back of a pen or a piece of gum; get up and take a brief walk or grab a glass of cold water so that we can return to our task and pay attention to it; or do less socially acceptable but still fairly normal things like bite our nails or twirl our hair. But the key issue here is that none of this sensory regulation comes naturally to Hallie. Like pragmatic language and joint engagement, this is all stuff we have to learn about her and help her learn and apply to herself. And, again, unlike her neurotypical counterparts, when Hallie's sensory system is out of whack, she will shut down (sometimes for extended periods of time, like days; she did this for a few days this week). Other kids will demonstrate their disregulation in more disruptive manners like extended tantrums. But, regardless, folks on the spectrum have a much harder time getting things back together after they have sensorily fallen apart than those who aren't on the spectrum do.

So, in the end, I am fairly certain that the new spectrum approach that's being bandied about where diagnosing autism is concerned makes more sense to me than the old three-or-four-distinct-disorders approach. To be sure, the degree of impairment matters and those who sit on the higher-functioning (for lack of a better term) end of the spectrum most likely do have an improved chance for a better outcome, especially if they are getting the proper kinds of services and treatment, than their lower-functioning peers. But regardless of whether one is high functioning or low functioning, anyone on the spectrum is going to have a whole lot of challenges where these three sorts of issues are concerned and really needs services/accommodations to help them reach their fullest potential. And maybe, just maybe, revising the DSM will help get more kids the help they need.