Duh...Smartphone

I had a pretty good week there where I posted something every couple of days, and then: I fell off the face of the earth.

Hello, and welcome to Monday. I am back, and not necessarily better than ever, but better than some days, which is better than nothing.

Quick update on Ceeya: her occupational therapist came down with the flu, so she couldn’t make it to what would be only our second session with her on Saturday. She emailed me on Friday to tell me this, rather than calling me, but since I was out of the office at an all-staff event all day on Friday, I didn’t see her email until Saturday morning, 45 minutes before I was supposed to leave the house. Fortunately, she had arranged for another therapist to take us at the same time. I was a little irritated because our appointment was for 12 noon—smack in the middle of Ceeya’s usual lunch/naptime groove—and she emailed to ask if we could do a 10 AM time just this once. That would have been my preference.

All this boils down to: I am really in need of a Smartphone, don’t you think? The more I think about it, I don’t even understand how I am functioning without one. Wait! Clearly, I am not functioning without one. I have my pathetic Motorola flip-phone and it is a piece of garbage. Wait, I didn’t mean that. It has served me well, but Ceeya threw it on the ground a few months ago and ever since then my screen has been badly cracked and I look like a total loser with my Fred Sanford phone. I have been waiting for my Verizon “new every two” deal to kick in—whereby I can get a new phone at a deep discount every two years—and that just happened last week. So I was merrily researching Droid Smartphones and mentioned to Sweet Dub that I was thinking of getting one.

Leave it to my husband to throw a wrench in the works. “Why don’t you just get an iPhone?” he said. “Maybe because I already have AT&T, we could get a deal and you could get the new iPhone 4. Maybe we could both get one!”

(Note that Sweet Dub was forced to buy a cell phone when he got laid off in April because his employer reclaimed the company cell phone which he had had for 6 years, thereby forcing him to switch phone numbers after 6 years, and by the way not letting him take any of his contact info off the phone, so he spent several laborious days emailing people and asking for numbers, oh my God, the humanity. At any rate, at that point, he chose the iPhone 3, and he LURRRVES it.)

I could be wrong, but I think it’s highly unlikely that we will have to pay less money for two new iPhones than for one Droid on the plan I already have, which will give me a substantial (read $300) discount on a new phone. Hence, this is all very pie in the sky.

You know those people they call early adopters? I am not one of those people. For many years, I thought the whole concept of every one having a cell phone was ridiculous. And even as a mom, who you’d think would be paranoid and need to have her phone with her at every moment just in case something happens to the kids, it took years—I mean seriously, only until the last year or so—for me to not leave my phone inside my purse, inside my desk drawer, and walk off to meetings and such for hours. I am just not all that plugged in.

Anyhoo: at some point in the next week or so, I expect to get a new phone and I will be up-to-speed for about five minutes until the next thing comes along. But most importantly, I will be able to get email anytime, anywhere, forever and ever, the end.

And maybe get all of my appointments synced up and know where I am supposed to be, with kids and without. That would be handy.

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.

Floundering

Recently, I received confirmation that, much as I’ve suspected, Ceeya has a sensory processing disorder. We have a variety of problematic issues that have gotten progressively worse in recent months. I don’t talk much about that here, which is a shame, because it might help someone else who is struggling with something similar. But I feel that we are just getting started sorting out her issues and receiving treatment (primarily occupational therapy). It may be a long slog.

I’m teetering on the fence of how much do I share here. How much of this is really her story, but also about how this is such a small part of who she is. She is a sweet and smart and funny (yes, she already has a sense of humor) kid. I love her to pieces. I don’t want this condition to define her, but at the same time it occupies so much of my energy and brain space.

Too often these days, the things that are happening in my life are personal to many other people, and I don’t feel comfortable sharing so much about their lives. Again, rethinking what I want this blog to be.

Thanks for your patience as I sort this out.