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Sunday, September 20, 2009

Developmental Concerns

Concerns are never far at bay in our world. We'll have some nice stretches of time (usually days, rarely weeks) when things seem to be going well around here and then other, more frequent and longer stretches when things seem to be falling apart or, more aptly, when the puzzle pieces do not quite fit into place and we are not sure what to do for Hallie.

We're kind of in the latter situation right now. For the past bunch of months (since around the latter part May, I think), the eating situation has gotten entirely out of control. Hallie went from more or less eating 20 to 25 foods (with lots of prompting, distraction, and reinforcement via rewards, but still...) to eating fewer and fewer as the days and weeks dragged on. We're now down to about four (on a good day) foods: potato chips (which she has even refused on occasion); chocolate cake (maybe, but it's worth a try); pretzels (ditto); and french fries. The last two are not consumed -- rather, she will bite the ends off of them and discard the vast middle, regardless of how crunchy that is. She might take a nibble or two of pizza if we're lucky but gone are the days when she ate a reasonable amount of this. And under no circumstances does she eat anything resembling a meal. "Meals" are at most 50 calories. And that's on a very, very good day. Foods she used to eat in pretty large quantities such as goat cheese (half an ounce to an ounce at a time); bacon (one to four slices at a time); hot dogs (anywhere between a third to a whole chicken hot dog); french fries (whole fries, and ten to twenty at a time); toast (anywhere between a quarter and a whole slice); toasted bagels and English muffins; the aforementioned pizza; chunks of watermelon, pears, and apples or little handfuls of raisins; and probably some stuff I'm forgetting about now are all mostly off limits. Ninety percent of the time, just presenting these foods to Hallie will yield repetitively screamed "NO"s, hand wringing, quiet meltdowns, and other manifestations of disgust. Under no circumstances will she try the vast majority of these, and while she might nibble at her now exclusively preferred texture (crunchy), she doesn't "eat" them in any conventional sense of that word. We've been to feeding evaluations and therapies, we have done copious amounts of reading, we've tried numerous tactics (immediate and deferred rewards, eating at the table as a family and engaging her in conversation, using other peers to model eating for her, not eating at the table, chasing her around with get the picture). She is having nothing of it. This is worrisome from a dietary standpoint since her intake is now limited to water (she'd drink this all day), fruit purees that we feed her (maybe 250 calories a day on a good day), and her beloved bottle (all hopes of getting rid of this now dashed, and before you write a comment saying that this is at the root of her eating difficulties please beware that on the best days she only drinks 12 to 16 ounces of her high calorie (27kcal) formula for a total of 300 to 400 calories---she's not exactly filling up on this, folks, since she needs a minimum of 900 calories a day to just hold her own).

We're not really sure what's going on here. Part of this is the "terrible twos" which our globally delayed kid has come to late (as she has come to everything else...except her birth, which she came to way too early, ironically enough). A friend of ours brought her just two-year old son over for dinner right before they relocated to California (and thus decreased our number of real-lfe friends by about 15%) and it was eye-opening to watch S. at the table refusing everything with which his mom presented him. So part of it could be a "phase." This phase, in typically developing children, is often linked to their realization that they are more independent and have more control over what they do in life. It's often a good thing, even if a hard thing, on the road to a child individuating him or herself. But your typical kid also drinks enough milk to compensate for refusing solids and, more importantly, often likes food--or at least something in the world of comestibles--enough to break down and come around to eating again. Hallie, in contrast, hates food and sees it as a source of pain (remember the GI pain, vomiting, etc that plagued her for so long) and does not 'feel hungry' in any conventional way. So she is content to not eat at all.

Parental intuition suggests to us that something more significant is going on than an extreme version of terrible two food rejection, yet neither Sharon nor I can wrap our heads around it fully. We don't think that the primary cause is physiological/medical, either. Certainly, Hallie's food aversions this past week or so may be attributable in part to signs of increased reflux (possibily due to her cold, which always increases her phlegm and probably naturally decreases her appetite, t00). She has managed to eke out a few more vomit free days (up to 184 at this point), but the vomiting has picked up some and so has the silent reflux. But the trend of not eating predates the increased symptoms of reflux and this seems secondary to the problem and not at the root of the eating issue.

Hallie is a kid who is very "spectrumy" (for want of a better sucks to be stuck in limbo knowing that your child has neither been placed definitively on the autism spectrum nor fully cleared from it). While all children need routine and even crave it, for her routines seem even more significant. She sets up her own rituals. For example, she has to take out certain toys when certain people come to play, must use swings in the playground before anything else, and has 'exit rituals' where she must touch certain objects on the way out of places. We are not sure why she needs these things, but she needs them--it's not just a matter of habit or preference, but some sort of connection in her brain that she is making and that she cannot explain to us. If you disrupt these rituals and routines, things don't go smoothly. Hallie does not have huge tantrums or meltdowns for the most part--this is one area where she does not resemble most children with ASD--but disturbing the ritual makes life more complicated. Here's one case in point: for the longest time, we could not figure out why Hallie felt that it was okay for Sharon to leave the house for work in the morning but that, on the rare occasion that she sees me leave for work or the store or whatever, she would burst into inconsolable tears. We finally realized that it was because no ritual existed for this. When I am at work, I leave home before she is awake and that there is no established pattern on which she can hang her head when I leave during the day for a trip to the store or to do some reading at a cafe. Were I to establish such a ritual, it would be fine. For example, on Friday nights when we head down to the shore for hippotherapy, we stop at a convenience store to purchase a bag of ice for the cooler. At first this used to elicit severe crying jags from Hallie that often would lead to vomiting. Distracting Hallie with a game of Dress Chica on the iPhone or singing songs didn't really seem to help. What did help was constructing a 'social story' for her that helps her anticipate what is going to happen and that she can turn into a ritual. We have now taught her to realize that 1. mama is going to the store to buy a bag of 'circle icey' (her name for ice cubes that have circular holes for your finger in the middle) and that 2. mama will be right back. She repeats this story to us and is okay when I get out and perform the task.

We have come around to thinking that something that we did to shake up Hallie's routine--and you can take your pick here about what that might have been--is what made things worse in terms of feeding Hallie (not that they were ever good, mind you). Back in May, in anticipation of preschool, we tried to get her off of the bottle. We also tried to get rid of the television (and pretty much have) at mealtimes since it was not only something she was going to have to live without when eating at school but because we felt that it was too distracting to her (it led to some pocketing of food) and inhibited communication and interaction, which is something else that we were working on. Either of these things, or some other shift in routine too subtle for us to have a handle on right now, might have triggered her to ramp up food refusal to an extreme.

This is what first got us thinking about routines and how they might play a role in all of this: both Sharon and I were at the most recent feeding therapy session with Hallie at Jefferson this past week and, while I had prepared the usual meal to feed Hallie (toast, cheese, spaghetti, chips, applesauce, and yogurt), we were so distraught about how bad things have gotten in terms of her eating that we never bothered to unpack the food. We just started to hash things out and brainstorm with the therapist. Hallie sat at the table playing and the three of us just talked. Part way through the session (maybe fifteeen minutes into), Hallie grabbed her pink lunch bag and began to rifle through it, brought the food containers to the table, unwrapped the toast (with help from the therapist), ate a small square of it (more than she had in days), ripped up the rest (she is a championship level ripper and player with food), and then asked for her reward. Why did she do this? Because that's the routine that has been established for this room. That is the structure of how things unfold and she cannot help but have them unfold this way. Anything short of this disturbs her more than eating disturbs her.

Since we cannot just take over that office in the Jefferson rehab building three times a day, we are beginning to think that our new task is to figure out how to come up with some new routine for her for eating that might work. I think this gets us a bit away from child-directed Floortime principles and back to ABA (applied behavioral analysis) but I think we can live with this approach as long as it does not involve force-feeding our kid. We are aware that we need to construct some sort of 'social story' for Hallie around meals. The only problem is that things around meals are now so bad that we really don't know where to start.

We also are concerned that feeding Hallie's demand for routine (pun intended) may be detrimental and not helpful in the long run. We need some guidance here from the specialists (thankfully, Sharon and I meet with our Floortime guy for a parents' session on Monday night and we have a follow-up with the developmental ped a week from now). Does encouraging repetitive or scripted behavior help or hurt a child who is spectrumy? Will Hallie learn to generalize things (like eating, or playing, or communicating) this way or just be stuck with a 'script' (which is often the charge lodged against ABA as a therapeutic approach)? How do we get her to do what she needs to do and yet also learn to adapt, be flexible, creative, and think outside the box? And this, of course, provokes more, longer-term concerns: will our smart, enthusiastic, and adorable little girl ever be able to adapt to changing environments, new people and routines, and forge her own way or will we always need to manage things for her? I don't think that I can go there right now (as tempted as I always am to try to grab hold of and analyze the bigger picture) since the long-term future is too hard for me to imagine.

Anyway, I do think that the past few weeks have been particularly hard ones for Hallie. For various reasons, she missed two hippotherapy sessions in a row and her poor posture at therapy yesterday proved how essential this therapy is for. Her eye contact seems a bit off, as well, and we're not sure to what to attribute this--it's too soon to be feeling the effects of no more private OT (I think), but perhaps this is an indication that we're not doing quite enough Floortime or sensory integration activities with Hallie. It could also be rooted in her lack of food and the cold she seems to be nursing. Who knows. Hallie is also still readjusting to being back at school. She no longer has problems when I leave her, but she seems upset when I pick her up (like she is not sure that I am coming or something. I am not sure what this is about--maybe her peers' departure prior to her own provokes anxiety in her. She cannot tell us this and so we simply don't know). She was out of school for break just when things really began to go smoothly and she began to fit in there. Then she lost her excellent school aide and, while the new one is nice enough, she doesn't seem to be particularly good at trying to get Hallie to mix it up with the other kids. Hallie is showing signs of opening up to the others on her own -- she greets them by name each morning, will happily sit down at the table or in the circle immediately and is not showing signs of separation anxiety from me on most days (again, it's become a ritual to do this, so it's now fine).

She does seem to be making some effort to play with kids, but the new aide isn't as good about writing notes as the old aide was, and her analytical powers are less well-developed than those of PCA #2, so it's not entirely clear to me what this play entails. She is certainly not doing the elaborately-developed pretend play I've witnessed when observing some of Hallie's peers. I know she doesn't have the skills for this yet. Her pretend play mostly involves acting like other people or creatures (we will pretend to be bears who do bear walks and growl; she will pretend to be her cousin Taylor who is just learning to walk and ask me to walk her around the house in the same way that Aunt Kim walks Taylor around the house; and she will sometimes pretend to be Lea and mimic her babbling and crawling). That's fine--it's something to build on. But I am more concerned that Hallie is merely doing a lot of parallel playing at school, and, once again, those questions about whether she is merely delayed or whether this is a sign of some underlying disorder keep cropping up in my head.

I think I will have an opportunity to help with some of this. On Friday, when I was picking up Hallie from school, one of the other moms at school invited us to go to the playground across the street from the preschool. Apparently, a whole bunch of moms bring their kids here at three o'clock so they can play out their sillies. The mom who approached me told me that her husband had noticed how enthusiastic Hallie was about greeting their son when he arrived at school. She wondered whether Hallie was in his class (she is not; he's one of the older kids but Hallie is so tall that she is frequently mistaken to be four, which sort of sucks since it makes her seem even more delayed). But Hallie had recently added M. (her son) to the list of friends whom she rattles off to us each night (we were thrilled about this addition because it means that Hallie has varied her routine). And so, for lots of reasons, I was very happy to join the others on the playground.

Even though Lea was awake the entire time, she was (and is) such a good baby and she was content to hang out in the stroller, feed herself a bottle, and flirt with the moms (aside: I am grateful that Lea is so easy-going but feel guilty that parenting Hallie often means that Lea is parenting herself. She is getting very good at holding and tipping up her own bottle, which is a skill that Hallie didn't develop until some time after age 1.5 or so).

Hallie mostly did her own thing and did not mix it up with the other kids. I tried to get her to hang out with the others, or at least buzz around in their vicinity, but she sort of had her own agenda, which involved swinging and spinning on the swings for a more than average amount of time and borrowing a stroller with a teddy bear from another little girl (I had her ask the girl, and then offer the girl turns with her own stroller, which she did somewhat grudgingly and with a few tears).

At some points, the others were over at the swings, too, and she copied what her classmates were doing. And at one stage, when they were all over by the slides, she softly whispered in a voice that was only audible to me, "c'mon guys let's swing." But she is shy and her paralyzed vocal cord doesn't lend itself well to screaming across a big playground. Still, it was a good sign. She knows that they are there and she wants to figure out how to play with them (and she wants to call the shots on how they play, which is something she does with some of her other friend's, like Eliza Grace, Alex, her cousins, or Karina when she pops in unexpectedly). Without being too helicopter-ish, I will try to teach her how to approach her peers. I may say something to the sympathetic mom who invited us to join them so she knows why I am doing this and not just chatting about Philly politics and school stuff, our cute kids, and how much the world is going to a hand basket with the other moms who hang back in a clump while their kids play independently and work it out for themselves. This is complicated: I know that I shouldn't have to explain why I am participating differently in my kid's playtime than they are, but I somehow feel compelled to do so. As much as I don't want Hallie to be seen as different from the others, I nonetheless do feel like explaining why I am managing things a bit for her is not rooted in my desire to coddle her so much as my desire to help her skills progress in a way that will, hopefully, allow her to manage things for herself down the road.

Anyway, if you have managed to make it through this tedious and rambling post, I commend you. This was mostly written to help me sort out the things about which we have been thinking and the issues we've recently been facing. If you have any insight or ideas, we'd love to hear them. And, rest assured, not all is falling apart completely around here: both kids are smart and adorable and we really are enjoying them. On the Hallie smarts: we had CNN on the other day (a rare thing, since our TV is mostly tuned to Noggin and Sprout) and Obama came on to advocate health care reform. Hallie turned to the TV and pointed and said: "Obama!" I think I told her his name twice leading up to the election and once or twice since then. She's got a great memory and excellent capacity to attach names and faces, which is decidedly not an autistic trait. On the Lea smarts: the kid is figuring out how to push herself up into a standing position and wants desperately to do this while not holding onto anything. While this presents her with some personal danger (she's gone boink a few times), she's very much figuring out how to negotiate her own universe and demonstrating a lot of independence. At the same time, she is a most engaged baby who follow us around using her power army crawl and when she realizes that she's caught up with us/found us, flashes us this huge and very winning smile.

And Lea just got her first tooth. Can't see it yet, but we can definitely feel it. I am not sure that this makes her smarter but it will help her munch down on her preferred foods (pretzels, graham crackers, bagels, and cheerios--she's skipping baby food, we think) much more easily. And this kid loves to eat, which makes us very relieved.

To reward the fact that you've stuck with this, here's a couple of shots of Hallie taken by Sharon at the playground last weekend:

And one of Hallie 'reading' to Lea in bed last week:

OK, I'll end here. It's eight am and I've been up since five and desperately need a cup of coffee...


Cora said...

Yikes on the eating front. My guess is that it's a number of reasons (no TV, school, attempt at bottle removal, etc) all combining together to really cause upset.

How to stop it, I have no idea. I do know though, that this age is all about them exerting their control. And I think that the more control and independence you can give her (or make her think that she has), the better her eating will become.

As for the love of routines, I think it is also the age. Amelia is the same way. She says the same thing to me everytime I leave for work, and breaking from something expected results in tears. I think that they crave the routine because it gives them stability in their rather crazy and constantly changing world.

I really don't have any answers for you, just sympathy that you're having such a hard time right now. These lingering micro issues just suck, and our kids don't deserve to have to go through them.

Sarah said...

Okay, obviously I have nothing to contribute. Emery eats large amounts of foods now, which I feed him, and honestly from that standpoint eats enough calories to sustain himself were I to push it.

But he won't chew. He will not chew anything. Six months ago he would chew on chips and crackers and spit them out but eat virtually nothing.

And if it makes you happy, my kid has the awful meltdowns, no longer socializes with other children, and still doesn't technically fit the mold of spectrum.


Kirsten Wood said...

As far as routines go, I can tell you that G is pretty intent on routines too: bedtime routines and goodbye-at-school routines especially. If we went into school through not-the-usual-door: complete freakout. For a while, he had a rigid bedtime routine, which he developed himself, largely, and from which we deviated at our peril. But the good news about this is that if we stuck to the routine, good-bye and bedtime were easy. And, good news bit #2: he changed the routines over time, adding and subtracting elements when he was ready. Assuming his behavior is at all generalizable, then I think that routines can really be helpful to kids, while not binding them. If you can watch Hallie like hawks and derive routines from her existing behavior as much as possible (not that you don't already watch her, but you know what I mean), perhaps that might help???

On the food front, I don't know what to say. That sounds so hard, so discouraging and even frankly a little scary.

On the playground front, I think that saying something to the other parents about why you do what you do is potentially important. I remember once Tom and I were hovering over George at a party, in a situation when lots of older kids were careening around in a way we found unsafe, and our hosts thought that we were offended by something because we weren't being with the grown-ups. (I guess they just couldn't imagine being as neurotic as we were....) You don't have to say too much, and you don't have to apologize _in any way_ for Hallie, but you can just say that your kid is shy and needs a little extra help to be comfortable, or whatever. I think saying absolutely nothing doesn't really work, since you've been included in an informal group that has its informal rules (moms chat, etc), and if you are going to play by different rules, so to speak, you need to say something to the others. Exactly what to say? that's the hard part....

My 2 cents, for whatever little they are worth.

BusyLizzyMom said...

Sorry to hear about the no eating again. Maybe ABA is the way to go and get some concrete ways for everyone to approach Hallie's eating (or lack of).
We have the same days you do, I feel like daily we are having to fight off the A word. I hate that I am constantly using my old ABA techniques on her but I see the A word rearing it's ugly head at times. Elizabeth is a very social child but is having a hard time interacting approapriately with other children; she roars, has limited functional play and flits around from place to place. Her sensory needs also don't help as she gets fixated with pebbles, dirt and sand.
Elizabeth is very off these days as well, her anxious behaviors have crept up and we have noticed she is clapping and humming a lot. We have began to brush her again and are hoping that this will calm her down.
I would love to know how things can go so well at times but at other times it seems we are fighting a losing battle.

Anne said...

Well I have no pearls of wisdom, but can offer soem comparisons so you don't feel you are alone on the HMS Prematurity.

Routines: Pretty much things have to go a certain way at certain times or all hell breaKs loose. When bathtime (which is a good hour since Eliza is thrilled with the water) is over, it involves a very specific clean up routine. If the "funny shapes" are put in the bin before the animals ... well let's just say I am gratful the neighbors haven't called CPS. But the routines have evolved and we have left some behind, so I tend to think this is part of how a three year old orders his or her world.

Transitions: Yes I am often that parent who is dragging the screaming child from the Carousel... like today ... after 5 consecutive rides. How do I deal with it? I give up from the get go and plan ahead of time what $5 blow up toy I am buying from the nice lady next to the Carousel exit. I am hoping she will buy some of them back from me for resale one day.

Feeding: Well we know what a champ Eliza is on that front, given that one staple of her diet is cheese puffs. First off, to hell with the people (oddly I find this is mostly women) who want to complain to you that your kid drinks from a bottle (75% of those women breastfed their kids until they were 3, but that's OK since it is "natural"). When people have been brave enough to tell me Eliza shouldn't drink from a bottle I tell them she would be dead or wearing an equally unnatural g-tube if I took it away.

All that bitching aside, I do think that the more Eliza can particpate in a meal like a regular person, the more she is willing to try. For example, when my Mom is here, our routine is to get bagels in the morning. Eliza gets a mini bagel and sits in her booster seat (no high chair) with Nana and low and behold with eat bagels with Nana and drink juice from a cup. Now, most of the bagel is shredded but I would say 1/8 of a mini bagel gets in her. So this example is a combination of routine (the Nana breakfast in NY routine) and control. The first moth or so of this, Eliza simply had a bagel to carry around wth her and then I asked if she wanted to sit with Nana, which she did. Her chair has to be in the same spot (more routine) but it works.

On the school front, I think Eliza and Hallie are both socially immature, perlty form their births but also from being isolated form other kids. Eluza has yet to be able to tell me her teacher;s name, the other kids' names or even what she did. She does seem to want to go adn she does try to participate with the other kids,, but I think a lot of the difference is pure social immapturity as opposed to something scarier. It is like you or I went to a foreign country, we'd be lost until someone took us under their wing or until we learned the language.

Still putting my vote in for Saba... new medical facility opening soon, nearby French Hospital, is in dire need of sensory gym, daycare, hell even a good kid's clothing store... land of opportunity, great weather and the Dutch Health Care System

Emily said...

A behavioral approach was the only thing that worked for us in terms of feeding. Although perhaps I shouldn't say we're still on pureed foods with no chewing and regular vomiting. In any case, good luck and I hope you find something that works!
Noah is all about the routines too, but as his language has progressed I've found that we can eliminate the meltdowns by giving him a verbal overview of any changes. So if I drive past the neighborhood on the way home from school he loses all sense of control, but if I tell him at school that we're going to the bank and the grocery store and then home I can then repeat that when he starts to get upset and he's able to stay in control.
I worry a lot about Noah's social skills and he really needs me to help him interact with peers. I usually don't feel the need to say anything, though, as it's fairly obvious from the number of accessories he has (cane, cochlear implants) that he's got some issues. If we're somewhere (like the pool) where he can't wear the CIs and therefore can't hear at all I do say something to other people.