Nuggets

Photo:  3 pigs craft and flannel board story - Creative Commons, by Mommachels-Flickr

I have only touched briefly on the school changes that have happened with us over the past few months, but I want to give a bit more background because this has impacted us a great deal. Around December of last year, it was becoming painfully clear that (1) due to staffing changes, Ceeya’s preschool was not providing the type of care we had become accustomed to; and (2) it was becoming cost-prohibitive to send her there. The preschool was struggling financially so it was understaffed and couldn’t afford to bring in different teachers, and we became aware of an exodus of kids from the school.

Ceeya’s preschool teacher had taught 3^rd and 4^th grade previously but she had no classroom experience with this age group. I didn’t feel she was engaging the kids at the appropriate level – she seemed to default to arts and crafts and coloring, which I felt was a missed opportunity for this age group. They are little sponges for information at that age, and school can be so much fun for them. I also noticed that Ceeya’s toileting hygiene started to slip because the teacher wasn’t as on top of it as the previous teacher. The children in the class were a mix of three-and-four-year-olds, so they were all potty trained but still at the age where I would say they needed regular reinforcement on how to wipe and wash their hands.  At home in the bathroom with her I realized she had stopped wiping at all and no longer even flushed the toilet. It was infuriating and I had to have repeated conversations with her about how important it was to keep herself clean. I also had conversations with the teacher that seemed to go nowhere, since there was no change.

As things deteriorated, we started working with Ceeya at home in the evenings and on weekends with materials we got from Lakeshore and various online sites because we felt her fine motor skills were stagnating (a relevant concern due to her sensory processing issues) and quite frankly because she was bored with school.

At the same time, I started looking into other preschools in our area, most of which were (1) just as, if not more, expensive and (2) not accepting new students. The situation was looking desperate. And then the skies parted and the fates conspired to have me run into a former coworker/ friend/ neighbor at an event that I would not usually have been at, but was asked to attend because another coworker had a dentist appointment. And there, my problems were solved, because she told me about a FREE LA Universal Preschool (LAUP) program in our old neighborhood, which was collaborating with a FREE pilot pre-K program at Viva’s school (which, hello? How did I not hear about it?). They were in need of additional kids for the program because it was still new. 

So in February, Ceeya began attending two FREE educational programs and our only cost now is before and after care, which saves us $500 a month. Instead of coming home with coloring pages, Ceeya now comes home with sheets to help her trace her name. She is learning to read sight words (the, and, this, etc.) and can read some books by herself. In LAUP, they have done a unit on the life cycle – so they have hatched real live chicks from eggs, they have a tank full of tadpoles, and they recently acquired caterpillars and are learning about chrysalises. She has a new best friend named Miles, who is crazy about her.

All of this is great, except for one thing:  the naps.

Due to the structure of the LAUP/Pre-K programs, there is no nap time scheduled for these kids. The person running the LAUP program also runs the after-school program, which includes older kids. There is no separate quiet space for the younger kids to nap.

Ceeya is awesome when she’s well-rested. When she’s not, it is – how do you say? – challenging. Basically, she falls apart at the slightest perceived provocation. Witness, last week at around 5:30:

I have just gotten home and I have gone into the other room to change my clothes. Ceeya and Viva have unpacked their lunches and are sitting on their bed talking.

Ceeya:  Guess what we had for snack today?

Viva:  What?

Ceeya:  Tacos and chips.

Viva:  Chicken nuggets.

Ceeya:  [falls out screaming and crying]

Mama [runs into their room]:  What happened?

Viva [wearily]: I have no idea, all I said was chicken nuggets.

Ceeya [after 3 minutes of unintelligible cry-talking]:  I said I had tacos and she said I had chicken nuggets!  [screaming and crying again]

Mama: I don’t think that’s what she meant.

Ceeya:  But I didn’t HAVE chicken nuggets! I had tacos!

Mama:  I understand. So if YOU know you had tacos, then you had tacos. What difference does it make what she says?

Ceeya:  Because she is MEAN.

Viva: WHAT? Oh my God. I didn’t even –

Mama:  Viva.

Viva:  What?

Mama:  She is deliriously tired. Let’s not make things worse. Let me talk to her. Why don’t you go relax yourself in the other room, okay?

Viva goes off in a huff. I am left to put Ceeya back together from a little puddle on the floor.

And repeat this scenario in various incarnations to infinity, and that is what our life is like right now on the weekdays. Sometimes Ceeya passes out at about 6:30 and we have to bathe and pajama her in a half-conscious state. Sometimes depending on his schedule Sweet Dub is able to pick them up from school at 2:30 and can manage to get Ceeya to take a nap by 3:30 or 4:00, but by that point since she wants to sleep for two hours she is impossible to wake up. Either way, it is not a good time.

 

For future discussion:  Ceeya just misses the cutoff point (must be 5 by October 1) for kindergarten for the fall. Her pre-K teacher says there is no point to her doing another year of pre-K. In the meantime, Viva’s teacher is saying that Viva is at the top of her 4^th/5^th grade class and she won’t have anything left to learn in 5^th grade next year. I really wish I could just take one year off and take the kids out of school and travel. There is that whole pesky “how would we eat” dealio though.  Hmmm…

 

Finally!

After a week of back and forth over whether we needed a referral for Ceeya and in what format, I finally cleared it all up and dropped by the Regional Center this morning. While I was expecting to just drop off Ceeya's original assessment, they asked me to sit and talk with an intake specialist. After a 20 minute interview during which she asked questions to which I did not know the answers (at what age did Ceeya sit up? Say her first word? Really? No idea. All I know is that she hit all major developmental milestones at the appropriate times, because our pediatrician would ask what new things she was doing every time we went in for a checkup, and she was right on track. I didn't write these things down in a baby book or commit them to memory and for that I felt the slightest tinge of guilt which I quickly got over. Ahem, anyway...) I say, after this interview, she set an appointment for occupational therapy with one of the actual doctors for 12 days from now.

So what I am saying is that the clouds have finally parted and it looks like we are actually going to get free (or at least low-cost, once they assess our insurance information) therapy to help Ceeya with her various issues.

If you felt the earth get about 800 pounds lighter this morning, that was the movement of the 800-pound gorilla finally getting off my back. How do you spell relief?

So here we are. In other world news, after trying since this summer (I simplemindedly declared August "the month of pasta," the more fool me) to get Ceeya to try macaroni or spaghetti or whatever, three days ago, she tentatively put farfalle pasta with butter and cheese into her mouth and declared it good. Since then she has been requesting pasta for lunch and dinner every day. So again, there is hope. Yeah, it only took her FIVE MONTHS to accept one new food (and I have not yet tried a different pasta shape, I'm just sticking with what works). Whoever tries to minimize the struggles we've been having with her can stick that in their pipe and smoke it.

So yeah, I'm feeling optimistic. And that's unusual enough that I have to point it out, somewhat tentatively because I'm worried I'll jinx myself. I'm halfway holding my breath.

One step at a time, chickadees.

The Present

Happy New Year!

So far, this year 2011 has been very busy. We are almost a week into it, and it doesn’t suck exactly, but I was hoping for less running around like a rat in a maze for 2011 and more—I don’t know exactly, but more of things kind of going swimmingly well, with everything tinted in a kind of rosy backlit kind of way.

I am doing lots of things! Not really anything that is interesting, unfortunately.

I have been caught up in the swirl of the holidays and vacation and, back at work this week, we are preparing to move to a new office building 15 minutes away. There has been a lot of activity at home and at work and not much time for doing my own thing. My co-workers and I have been pranking each other and making snarky remarks about how we’re going to take over the new building once we move. My co-workers are a rowdy bunch. Every now and then we actually pack our crap into big black crates and slap labels on it. The move is allegedly happening tomorrow and over the weekend, and on Monday we are just supposed to show up at our spanking new offices and everything is going to work perfectly, forever and ever, Amen. I am skeptical.

At home, Viva is in her THIRD WEEK of vacation from school—curse you, Los Angeles Unified School District!—and Sweet Dub has almost certainly had enough of her. He has played Legos, and Bingo, and Monopoly, and scheduled playdates and sleepovers, and they have ridden bikes, and they have fought over the remote. When I arrived home last night he said defensively, “I haven’t been letting her watch TV all day,” even though I had made absolutely no such accusation. Viva was still in her pajamas at 5:45 PM. We were out of milk, and dishes were piled high in the sink. I took a deep breath and went back out into the night to the supermarket.

Our house is a wreck. But the kids seem happy to have had all this intensive one-on-one time with us, so much so that Ceeya won’t let me close the bathroom door between us.

Speaking of Ceeya: somewhat good news on the therapy front! I have contacted my local Regional Center and based on what I have told them it appears she is eligible for FREE services for her developmental delays. I must now get a referral from my pediatrician and/or the occupational therapist who conducted our initial assessment, HAND-DELIVER it to the Regional Center (tell me that will be easy) and then begin the nasty bureaucratic process—er, um, I mean, the exceedingly pleasant process during which I will run across happy government employees who will indulge my every request—of whatever I have to do to get her free therapy.

I have to say that Ceeya is doing much better on her social skills, somewhat better with her fine motor skills. Still needs work on depth perception and oral motor. Her food issues have seen no improvement. Somehow despite this she is growing like a dandelion. I include her hair in this characterization.

As for the title of this post: it is not a reference to a gift. It is a reference to what is happening now. Much as I resist New Year’s resolutions and their ilk, what I want to focus on this year is being present, as much as possible. Forget the dishes in the sink, forget all the stuff on the “to do” list, and give my attention to what is in front of me at any given moment. Easier said than done, but as 2011 motors along, I’m hoping I can retrain myself to do it.



P.S. I also want to cut down on using ALL CAPS in my posts. Rereading the post: what was the yelling for?

Food for Thought (2 of 2)

So here is the thing with Ceeya, as we call her. There are all these neat little boxes that “specialists” want to put her in. She has dyspraxia and neuromotor incoordination. She is oral defensive. She is a resistant eater. She needs helps with her oral-motor skills. She is tactile defensive. She needs help with her fine motor skills. I could go on.

I could. I could make myself crazy looking up stuff online (okay, so yes, done that) and reading books and articles until my eyes bleed (almost), and worst of all, feeling unable to share much of what we’re going through because (a) some people really don’t believe in all this mumbo jumbo and say, “there’s nothing wrong with her, she’s just sensitive…she’ll eat when she gets hungry…you’re spoiling her.” (No, it’s true, some people say some bullshit like that. It’s astoundingly helpful, just as much as you might imagine.) Or (b) some people will really want to get all in your business and ask all kinds of questions, most of which are not really all that helpful, under the guise of being helpful. “Have you tried X?” they ask. “I heard that helps with autistic kids, my friend’s niece had a baby who had that.” As I prevent my head from exploding into smithereens via the sheer force of my will, I explain that Ceeya is not autistic. And as much as you are trying to help me, I am relying on paid professionals who, you know, have some kind of training in this area? To help come up with some kind of treatment? So as I do not run screaming off into the night?

I also steadfastly refuse to share this with my mother because inevitably she will latch onto Ceeya’s diagnosis and conclude that she has suffered from the selfsame thing for lo these 60-some-odd years, and that every bad thing that has ever happened to her can be traced back to it forever and ever amen and that it is too upsetting for her to deal with because it makes her think of bad things that happened 50 years ago and how things could have been different if only, so we should never speak of it again but recognize that she is suffering silently henceforth. Let it be stated for the record that I love my mother dearly, but: she has been known to try my patience.

I am tired. I have been dutifully taking Ceeya to occupational therapy once a week, which I now have to submit claims to my insurance company for and struggle to get reimbursed for. It is a dance that I never wanted to learn. We have been doing all kinds of activities with her—exercises to strengthen her grip, a vibrating toothbrush to desensitize her to oral stimulation, putting at least one unfamiliar food in front of her at meals and leaving it there even as she screams in horror. We play blocks with her, build Legos with her for fine motor coordination, bounce her gently on the bed to help with the vestibular issues. I know it will take time. It will take time.

Tonight around the Blah Blah Family table, we were building taco-burritos for dinner. Ceeya watched as we each spooned ground beef, and then rice with tomatoes, and then lettuce and cheese on our tortillas and rolled them up. She asked for rice, and lettuce. She carefully, methodically, spooned them out of the bowl and plonked them next to her shredded cheese. She didn’t eat them. She arranged them on her tray, and then asked for more.

This is nothing. At the same time: this is huge. She is playing with unfamiliar food. She is not eating it, but she has decided that it is not scary. It has a place on her tray, where the rest of her food goes.

It will take time. Lord, I am tired. But tonight, this one small thing made me happy.

Food for Thought (1 of 2)

I have been doing a lot of work with Ceeya’s occupational therapist on her oral motor skills to try and find ways to help her learn to eat better. Aside from a lot of oral motor exercises (try and get her to eat applesauce through a straw, see if she can blow a cotton ball across a table faster than her sister, etc.) I’ve been doing a lot of online reading.

Just found two blogs about kids and food that I’ve added to my reader and I’m putting them out here for you to peruse and enjoy:

(1) Spoonfed
(2) Raise Healthy Eaters

More to come, but wanted you to know I haven’t run off screaming into the night. (Well, not permanently.)

Chewin’ the Fat with Dr. Eats

I met with a nutritionist yesterday to talk strategy for Ceeya's feeding issues. It was very helpful, and I walked out of there feeling poorer, but optimistic.   For one thing, the nutritionist (known henceforth here as "Dr. Eats") was very encouraging about what we are doing right, such as all eating together as a family at the table without the TV on, saying grace before meals (SPD kids need routine and ritual), and pushing fresh as opposed to processed foods as much as possible. She also liked that we are doing sensory activities that are related to food, such as putting uncooked rice and beans in a large Tupperware container, hiding small toys in the rice and having Celia dig through to find them, and "painting" with whipped cream.   Her primary concern as we talked about what Ceeya eats is that she's barely getting any carbs, since she doesn't eat rice, pasta, bread or potatoes (except in French fry form). So she wants us to begin trying to get her to eat those at every meal—to keep giving her the core foods she loves but also at each meal to offer a food she won't currently eat, preferably a starch. She made the point that when Ceeya rejects a food that she has been accustomed to eating, we should respect that, keep it out of her diet for a few days and then bring it back.   Interesting: when I told her of Ceeya's vestibular issues (i.e. she becomes anxious with unsteady or unpredictable movement), she asked whether she sits in a high chair. She does, so Dr. Eats suggested simply moving her to a child-sized table and chair, so her feet are firmly on the ground and she doesn't feel like she is floating in space. Despite the high chair having a platform for her feet to rest on, she may simply have issues with eating that far up off the ground. That had not even occurred to me, but it makes perfect sense.   Other tips: make everything bite-sized and stick a toothpick in it. Since Ceeya hates touching things, she may be more amenable to eating food when holding it on a stick. (She certainly loves popsicles, so this is familiar to her.) Dr. Eats suggested making really tiny meatballs, cream of wheat "snowballs," and rice balls to be speared with toothpicks. Sweet Dub, ever the dedicated father, has declared Friday night "Toothpick Night," and claims he is making food the whole family can eat and it will all be on toothpicks.   Dr. Eats says we should make the most of Ceeya's willingness to dip things to get more protein into her—since she loves tortilla chips, she suggested pureeing black or pinto beans into bean dip, or making "baby" guacamole with mashed avocado and a little salt. She is already into dipping fruit into yogurt, so we will just continue with that.   Portion size is another thing. We don't tend to give Ceeya a lot of food at one time, because it overwhelms her and she will just throw it all off her high chair tray and look at us blankly. Dr. Eats said that even giving her a lump of mac and cheese is too much—we basically have to differentiate each noodle. "Pull out five individual noodles from the mac and cheese," she said. (Dear Lord.) Dr. Eats also suggested getting Ceeya more involved with food prep—for example, in making homemade chicken tenders. She advised putting cornflakes in a Ziploc bag and letting Ceeya bang on the bag until they're pulverized, then putting boneless chicken pieces in the bag and letting her shake it until they're coated. She can then watch me fry them. "Now, she may not eat them the first few times," she said. "In fact, you might have to make them that way twenty different times before she'll actually eat them. I'm not saying she's going to eat a new food tomorrow, but she may eat it in three months."   So, pretty much as expected, there is no quick fix. We're in this for the long haul, but there is at least light at the end of the tunnel.   And my little lambie pie is so worth it.

The Official Word

Yesterday when I picked Ceeya up at daycare, they told me she not only refused to eat her yogurt, but she had a complete meltdown about it. It feels like the range of foods she will eat is steadily shrinking.

Here’s the good news: I have a consultation with a nutritionist tomorrow. Cost: $175. That’s not so good.

But: we received our full evaluation from the occupational therapist. Verdict: Ceeya presents with an array of behaviors that indicate sensory processing difficulties, including:

Tactile defensiveness, which means her central nervous system has difficulty processing and modulating incoming touch sensations. She is averse to many textures including many different kinds of food. This has impacted her muscle development in her hands because she does not use them as effectively as she needs to manipulate and explore, so she is delayed in terms of grasp patterns and object manipulation.

Oral defensiveness, which makes her highly sensitive to tastes, textures and temperatures of food. She eats a very limited range of foods, primarily cheese, fruit, crackers, chips, and over time has actually decreased the foods she will eat, probably because she is bored from eating the same damn thing all the damn time. So now off the list are cottage cheese, yogurt (as of yesterday), applesauce, steamed green beans, broccoli and peas.

Poor modulation, which means she can’t self-regulate very well. She gets upset easily and can’t calm down, she has a hard time falling asleep, she is a restless sleeper and if she wakes up in the middle of the night she can’t put herself back to sleep. I am serious when I tell you that I have not had a good night’s sleep in over two years.

Over-responsiveness to sound, i.e. “kids’ birthday parties are my worst nightmare.”

Decreased vestibular processing, which means her awareness of where her body is in space is poor and unpredictable movement of her body freaks her out. This translates into her hatred of swings, not liking to tip her head back to get her hair washed, and an aversion to unsteady surfaces like a balance bridge or a large trampoline (she seemed to like the small trampoline at the OT center, which had a support bar she could hold with both hands while jumping).

So we clearly have some work to do. I am relieved that this is not just my imagination, or something she will grow out of on her own. I was really upset when I first read the report, mainly because of her fine motor delays, which I wasn’t even aware of. She has low muscle tone and decreased strength in her hands due to her tactile sensitivity. Rationally I know this is reversible, but it just hurt my heart to read it.

Recommendation: occupational therapy twice per week, as expected.

Current status: waiting for a phone call back from the head of the OT Center to discuss more realistic options.

A Grain of Salt

This week I have been going back and forth via email with the very nice occupational therapist who is writing up Ceeya’s assessment. She cautioned me that because SPD is not recognized as an official condition and will not be until inclusion in the DSM-V in 2013, for now she is going to have to couch her observations very carefully in order to see if we can get full coverage for Ceeya’s therapy. For one thing, she is going to note things that I don’t think are an issue, like Ceeya not being able to put a wooden puzzle together correctly, as a fine motor skills delay. “Read it with a grain of salt,” she says. (I love salt! Salt N Pepa too!)

On the one hand, I appreciate this, as I do not have the fundage to pay for occupational therapy twice a week out of pocket, to the tune of $15,000+ per year (since that was her initial recommendation—a full year of therapy, sweet holy Moses. Have I mentioned that my darling husband got laid off in April and is still unemployed?). On the other hand, I’m not crazy about the idea of Ceeya being labeled with something she doesn’t have, and I worry about all sorts of “pre-existing condition” crap that might follow her forever. That does not float my boat, my friends.

If Ceeya did have some sort of fine motor skills problem, it goes without saying that I would want her to get some help for it. I am not THAT bad of a mommy. I think. But that morning was the first time, to my knowledge, that she had ever even seen a puzzle of that sort. The fact that she matched the shapes to where they were supposed to be, but didn’t actually press them in hard enough so they would stay there, indicates to me she didn’t fully understand the point of the exercise—not that she was incapable of doing it correctly.

Over the weekend, I bought a similar puzzle at Target which had more pieces and was labeled ages 3 and up (they didn’t have any which were labeled for younger kids, which is probably why Ceeya hasn’t encountered them before since she is not even 2 yet). Ceeya matched all the pieces perfectly but again didn’t push them fully into place. When I asked her to do that, she did, with a bit of frustration on a couple of oddly shaped pieces, but she figured out that she just had to move the pieces around a bit to make them fit. Now it is one of her favorite things to do.

This leads me to the official Blah Blah plan for handling our business, which boils down to this: we would rather fork out a few hundred dollars at the outset for sensory-stimulating and educational toys and play with Ceeya every day ourselves than pay out $1,200 a month to a twice-weekly occupational therapist and then fight to get reimbursed by the insurance company.

By this I mean no disrespect to occupational therapy as a profession. I realize neither Sweet Dub nor I are trained to provide OT, but surely there are ways we can work with the OT to reduce the time and cost and make it work for our family.

Stay tuned for next time, when we (hopefully) get the actual written report. What will it say? What does it all mean? Will I ever look at a wooden shape-sorting puzzle the same way? And will there be ice cream? (Highly doubtful, and perplexing.)

And So Our Long Journey Began...

So we had Ceeya’s assessment on Saturday morning, and it was quite an experience. The Blah Blah Family arrived at the center on time, and sat in a very nicely furnished, sunny waiting area with lots of toys, books and puzzles. Ceeya and Viva immediately began playing together with one of those giant wooden activity boxes. Our assessing occupational therapist arrived and started us off with the paperwork. There was so much paperwork that Sweet Dub and I split it and continued working on it throughout the session. Much of it involved our own assessments of Ceeya’s sensitivities, but some of it involved very detailed questions about her birth and her developmental milestones. I honestly don’t remember exactly when she started doing certain things (the curse of the second child!) but I know that she has always been well within the normal range of physical development.

Anyhoo, we were there for well over an hour, and the OT tested her with puzzles, checked her muscle tone, tried to get her into a swing (which Ceeya was simply not having—she detests swings and almost anything that makes her unsteady. Oddly, she enjoys a rocking horse or a rocking chair), watched her on a trampoline, checked her balance on an exercise ball, watched her eat, had her use crayons and utensils, etc.

One thing I will say is that I was really surprised and proud that Ceeya pretty much took off exploring in each play room that we went to. (There were three successively bigger rooms.) This might have been because Viva was there with her and there were no other kids around, but still, I was pleased to see that.

We have not yet received the official evaluation, but the bottom line is this: the OT is not sure that Ceeya has enough “wrong” with her to be eligible for her sessions to be covered by insurance, and yet (yes, you knew this was coming) she would recommend therapy twice a week for the next year. She's pretty sure she has SPD (Sensory Processing Disorder), and that she's pretty much constantly in a state of "fight or flight," but yeah, probably our insurance won't cover it. Occupational therapy costs $150/session. Doing the math: that’s $1,200 a month.

Fortunately, I work for a children's social services agency and my bullshit meter was pinging off the charts.

Stay tuned for the next installment, when we take matters into our own hands.