The Texture Of Things

Notes on Therapy, Week #2

January 19th, 2011

In-home therapy is complicated in some ways. Like, you have to open yourself up, not just the emotions you are working on, but, um, your whole house. Yes, that includes all the dirty dishes you left on the table. And by “you”, I mean “me”, and by “dirty dishes on the table”, I mean “the mess throughout the entire house”.

Let’s just say that one good thing about starting up with S again is that she is familiar, a good friend, so I’m less worried about my house than I would be if our therapist were a stranger. And, frankly, I’m more concerned with getting to the bottom of things that if it so happens that S sees a pattern in our home that reveals a clue, then all the faster we go toward our goal. (Though, I feel kind of cring-y and twitchy thinking about how painful some of the work we are going to have to do will be. Stuff like refocusing meal times or rules or that sort of thing. Oy.)

Anyway, S came right after the tot got of the bus. The tot CHOWED a snack. She must have been starving. But, you know, as I think about it, the issue of familiarity comes up again. If it weren’t S, I wonder if she’d have eaten like that. I think not, because when there are people here, she generally doesn’t eat well. I wonder if she’s comfortable eating with S in a way that she isn’t with other, non-family people. I will mention this to S when I email her later.

During snack and after play, S and I chatted. More background stuff, details, and strategizing about how to put together the necessary releases for her to go observe the tot’s classroom someday. Then they went into the tot’s room to play with the baby dolls. The most salient thing that came out of the play was the tot’s reaction to S making one of the babies be scared of something. The tot called off the game temporarily and said, “All of my dolls are BRAVE.” So, she’s not ready to let down her guard and be scared with S, but it’s early, and that will come with time.

On the topic of procuring OT, let’s just say that I’ve called the two best contenders, and the wait lists are loooooooong. The place we went to before told me that because it’s been so long since we were patients there (2 years), we would be treated like new patients, and that means going to the end of a very long waiting line for after-school time slots — after all the current patients who are waiting for those times. The receptionist was not very warm, welcoming, or open to the idea of, say, putting me on that list. In our conversation, she created no openings for me to say, “Put me on the list.” I was brokenhearted to discover that the wait could be so long, but I called the other place, just in case.

The receptionist at The Other Place was warm and inviting from the get-go. She did admit that there can be quite a wait for those time slots (and their Saturday times), but she practically jostled me into giving her the info necessary for an OT to call me back with answers to my questions about approach, training, etc. The OT called me yesterday, and after hearing our story and talking through things like background, current therapy with S, and the tot’s school situation (lots of stress there!), she had the receptionist call back to schedule an in-person eval for this coming Saturday.

THIS SATURDAY!! OMG, WTF, BBQ!!!

Provided I can get all the necessary fuzzy little ducks in their fuzzy little row, naturally, and that includes a prescription from the pediatrician.

No problem! Except — problem…. The nurse at the ped’s office called back with a hundred questions and a solid undertone of cynicism. I guess the first time we got a script for OT two years ago, the ped didn’t put anything in the chart, and last summer at the tot’s physical (when we happened to see a different doc, purely due to schedule availability) nothing was put in her chart then either. Now, we didn’t talk at length at that last physical about it because things were generally fine, but I DID ask about caloric intake because I was worried about the tot getting enough to eat. The doc gave her a little speech about eating lots of vegetables so she’ll be “big and strong”. You know the one? The speech that all grown ups give all kids at some point to drive home the message of “healthy food might not be your thing, but you still have to suck it up and eat it”? That one. But there’s nothing in the chart, so the nurse has to talk to both docs before she can write the script for a doc to sign. She says she’ll get back to me on Friday about whether they will write the script.

W-T-F-Ever.

Bonus: Because of the rules with our new health insurance, I have to renew this prescription every 30 days. Let me tell you, I CAN HARDLY WAIT FOR THAT. Oy. Shoot me now.

Things to do/prepare for this week’s in-home therapy:
*work on OT paperwork
*get scary creature toys, like dinosaurs, sharks, etc.
*tidy the tot’s room

Intermission Music

January 18th, 2011

We’ve had our second play-therapy session, the notes for which are forthcoming. Also, I made a breakthrough today in scheduling occupational therapy.

I continue to have symptoms of teh Thyroid From Hellz, but I think the meds are slowly kicking in. Huzzah.

I’ll try to pull together a real post tonight or tomorrow. Love you all!

A Little Love, Please

January 12th, 2011

I am in need of a “Poor baby, I’m sorry this is happening to you.” Also accepted: ((hugs)). Other forms of sympathy welcome as well.

I went to the doc to get my annual thyroid bloodwork done so I can renew my prescription, and the results came back really, really bad. Like, seriously really bad. Like, the normal range is between .5 and 1.5, and my number is over 9.

I was honest with the doc about my poor compliance over the last 4 weeks or so, and he said that even considering that, my number shouldn’t have been above a 3. So, there is a problem. He has jumped my dosage up two levels, but it will take at least 6 weeks before I’m normal.

I have no idea how I am upright all this time, but somehow I have been. Of course, now that I know this information, I just want to go to bed and stay there until spring, but (again, of course) I will soldier on. I’m just pouty about the whole thing.

And I feel like an idiot because all of my classic low thyroid symptoms have been right in front of me this whole time, yet I didn’t see them until the doc and I were on the phone. Count “cloudy-headed” in that list of symptoms, I suppose.

Bright side, of course, is that we’re on the path to correcting it, but still. *pout*

BB Test

January 9th, 2011

This is a test to see if the WordPress app on my phone works.

The Problem with OT

January 9th, 2011

The tot received play therapy through a local organization from just after she turned two until she aged out of the program at four. At that time, we transitioned to Occupational Therapy at a privately owned clinic.

I was sad to be leaving our in-home therapy (and S!), but I had hope that the change would trigger a leap forward, as we had been stalled a bit. When we had begun, the tot had so much anxiety that trying to work on food desensitization could only happen at home. Outside the home, she would simply shut down. But as the tot got older, she progressed and, I think, was actually held back by being at home. So, the clinic.

The hour-long sessions occurred on a weekly basis, and were broken down roughly as follows:
*about fifteen minutes doing gross motor play and motor planning
*about fifteen minutes doing pretend play
*a transition from the big gross motor play room to the small room, plus getting situated
*about 10 minutes doing oral motor play (whistles, bubbles, etc)
*whatever time was left rushing through the food items we had brought to focus on

This was problematic, and my criticism of it is tangled. On one hand, I understand that the tot has a motor planning delay. Yes, she needed to work on that, but that was a secondary concern for me. Additionally, I understand that the tot scores on the border of Sensory Processing Dysfunction (or whatever they’re calling it this month), so yes, she needed the gross motor play to help her regulate her sensory integration, but the amount of time we spent on it could have been shorter because, with coaching, I could have done it prior to the session.

My priority was food, from day one, but it was not K’s priority. So, each week, we spent too much time doing things that were useful, yet they used up the time I wanted to be spending on eating issues. This was complicated by the fact that K was impossible to communicate with. We routinely ran over time, so there was no time to talk about how to improve the session during the session, and only after a couple of months did she reluctantly give me her email so I could send some questions to her. Even then, I don’t think she checked her email every day because it would take many days before I’d get a reply, and when I did, it never fully addressed my concerns.

So, I bailed. I am not proud of this, but my aversion to confrontation got the better of me. I used the birth of Tater to try to reschedule as a way of getting to meet another therapist, but it didn’t work. My schedule didn’t line up, plus they were booked solid and acted like they preferred to simply put me with K on another day.

I completely felt like I was done. At home, HG was making progress with the tot eating, and it didn’t cost a 20% copay each week. On top of that, it was during this time that we discovered the tot’s tongue tie, and when I asked K to take a look and tell me what she thought of our choice to pursue surgery (eventually), she dismissed it. She said it was definitely tied, but the tot didn’t need surgery because she didn’t have a speech impediment. (Bonus: the ENT had *just* told us that some large percentage of kids with tongue ties do not actually have speech problems. I don’t recall the percentage, but I recall being STUNNED!)

Ugh. So, we went for a few more weeks, and then HG caught wind of some downsizing happening at his company, and I decided to temporarily cancel therapy and sock the money away as a way of battening down the financial hatches at home. I figured, at the time, that I could try to go back in a while and request another therapist, but following the tot’s surgery, we had so much success at home that it hardly seemed worth it.

We’ve had our ups and downs, but it wasn’t until this most recent big down that returning to therapy even crossed my mind. Now it seems pretty critical.

Day One

January 7th, 2011

Day one of therapy:

The timing of the session appointment is such that S arrives right when the tot gets home from school, so today the first few minutes was small talk and such while the tot ate some pretzels and had some chocolate milk. It will take a bit to hit a routine and find a way to expedite that after school snack, or we might have to move the session by a half an hour. We’ll see.

The structure of the session was split between play and gathering history. S and the tot played in her room (it’s going to be just the two of them) for a bit before S came out and we all sat together and talked family history and anxiety patterns. A lot of the conversation was just refreshing her memory about the tot’s history — her birth, her size, her early anxieties. Ultimately the session will be an hour of play, just the two of them. I’ll hang out with Tater elsewhere in the house.

S and I emailed a bit before today’s meeting, and in those emails, we decided a team approach is necessary. S will work with her on the anxiety, and we’ll find a clinic for therapy surrounding the actual eating process. As we talked about the tot’s tongue tie and early eating difficulties, S suggested that perhaps instead of an Occupational Therapist, we look into a Speech Therapist for the clinical therapy because a Speech Therapist is trained in oral-motor strengthening and such. We’ll see. I thought it was an intriguing idea, and frankly, I don’t care which kind of therapist it is, as long as it’s the right kind.

I need to:
*request of the tot’s growth chart from the pediatrician
*email S regarding some details I didn’t want to share in front of the tot
*get some baby dolls together (S requested next week they play with babies)

Things

January 7th, 2011

I am making a handful of mistakes right now that I know I can correct. Somehow, I feel powerless to change them. I am going to challenge myself to do something by putting them here, where I can’t as easily ignore them as I seem to do with my To Do list.

The problem: I am not taking my thyroid medicine with good regularity. The cause(s): the meds are in my purse, not the bathroom, and I hate taking them. The solution: move the meds; also, quit bitching and take one pill on the way to the medicine cabinet.

The problem: I am not getting enough sleep. The cause(s): I toss and turn, wake with back pain all night; I have anxiety over the tot not eating and the impending therapy; I am staying up late to hang with HG and to chat with friends on FB, because that is my “me” time. The solution: get a new mattress in 2011, go to bed earlier than midnight, maybe take a Tylenol before bed?, put the kids to bed earlier so I can still have my “me” time and get to bed.

The problem: I’m lonely. The solution: do something with my friends. // I don’t really know what else to put with that one. I like my friends, and they presumably like me, but I guess I too often put myself on the backburner and I forget that hanging out with my friends makes me happy, so I don’t prioritize it. Maybe dinner out with HG should make that priority list… 😉

The problem: I need new clothes. The cause: everything is ragged, holey, or hopelessly out of style. The solution: I have to shop for myself, but I don’t know when to do it. I need to be kid-free or just have Tater with me (the tot just whines if the shopping isn’t about her — early emergence of the teenager syndrome?), and that’s been a challenge because the tot’s been ill. She’s on the mend now, and Tater is going to daycare Monday morning. Shop then? Is there enough coffee to motivate me to shop for clothes second thing in the morning?? (Internet shopping for the items I’m looking for isn’t palatable to me; otherwise, I’m so there.)

There are a zillion things I don’t have the answers for, but I think those wait until I get some of the more concrete stuff done.

Putting Puzzle Pieces in their Places

January 6th, 2011

Imagine that you have eaten something sticky — say, a bite of thick peanut butter on soft bread. It clings to the roof of your mouth, but you cannot move it because it’s in a part of your mouth that you cannot reach with your tongue. You suddenly feel like your airway is blocked, and what follows is a rush of adrenalin and panic and choking.

I cannot say I’ve experienced this myself, but based on the tot’s reaction to soft or sticky foods from the time she started solids to the surgery to release the tongue tie, I think this is accurate of her experience, at least.

Panic is a normal reaction to your airway being compromised, so it hardly seems fair to think she never should have panicked when faced with a new food or a soft food or a chunky food, but that is we did. We were constantly perplexed and confounded as to why our 9 month old could barely handle level 2 jarred baby food, which is smooth but thicker than the intro level stuff. I constantly felt like a failure because here was one thing that everyone expected should be easy. I mean, how hard should it be to teach a kid how to eat, right? You put food in front of them, and they eat. That is what everyone else’s kids seem to do.

But most kids are not tongue tied, so most kids eat and their parents don’t have to wonder why their toddler freaks out when they present yogurt with fruit in it for the first time after months of perfectly smooth yogurt. They don’t wonder why their kid won’t eat a sandwich or pizza or cupcakes with frosting.

Tomorrow, we start therapy with S, our old Food Friend. It will be only one aspect of the tot’s treatment. S will work with her on anxiety* and will help me line up an Occupational Therapist for the food side of the therapy. I feel hopeful and helpless at the same time. Our previous OT experience was mediocre, at best. I’ll jot some notes about that in time, but for now, I’ll leave it at this — I won’t see that therapist again, though I am willing to return to the center to see another therapist.

Tongue Tied

January 4th, 2011

I have a lot of ground to cover in order to get caught up after all of this silence. Forgive me if I rush the stories.

When the tot was born, she was in the NICU for 12 days. During that time, I was not permitted to nurse her, but was instead told to pump my milk and bottle feed her until such time as she could be transferred to breastfeeding.

When she came home, we tried, but the short of it is that it didn’t work and the help I sought was inadequate. So, I pumped for a year, and the time and energy burden combined with everything else that is rolled up in the raising of a child for the first year of life after a traumatic start nearly made me crazy. (HG would argue that it did, in fact, make me crazy. I’m probably not going to argue with him.)

When I got pregnant with Tater, I was determined (DETERMINED!) to nurse the baby. In my head, it sounded something like, “As Gawd as mah witness, I will nurse this babay!” Or, “I WILL nurse him, and if it doesn’t work, I will get help, and if that help doesn’t fix it, I will keep finding new people to help me until it works. I will NOT stop asking for help!”

To my great relief, when he came out, he nursed — he actually nursed! I was ecstatic! But, he did damage to me on his very first nursing, and that damage only got worse, so I called for help. After just a week, I was in so much pain that I knew without help, I wouldn’t be able to keep nursing him.

I knew that the “Lactation Consultant” I had seen with the tot had not been equipped to deal with challenging cases. I hadn’t known then, but I knew in hindsight, and I had researched the credentials Lactation Consultants can get. I wanted an IBCLC. No substitutions would be accepted. I called someone from my La Leche League group and got several names of IBCLCs. I called them all, and I hired the first one who called me back.

B is an amazing LC, and I credit her with so many wonderful changes that we went through in this family. It began with her visit, when she took one look at the damage Tater was doing to my breasts and said, “He’s tongue-tied. It’s easy to fix.”

W.T.F.

Basically, tongue-tie is when the tissue under your tongue is too short or too close to the front of the mouth. It keeps the person from raising their tongue up to the roof of their mouth or sticking it out very far. For Tater, it meant that he couldn’t latch on properly, and poor latch is baaaaaad for a nursing mama.

After B and I talked about Tater for a bit and she looked in his mouth, she gently asked if it would be okay if she looked in the tot’s mouth — just out of curiosity, because tongue-tie runs in families.

Ladies and gentlemen, if you do not see where this is going, you need to go back to the beginning and start again.

The tot was tongue-tied.

Holy Answer to Everything.

To fix a tongue tie in an infant, you go to an ENT, who checks the baby over and then snips the tissue (frenulum). It bled less than a drop, and Tater cried less than 10 seconds. It took about a week to ten days for him to get organized as a nurser, but after he did, he nursed like a champ until he self-weaned at 16 months.

To fix a tongue tie in an adult, you follow the same procedure, minus the re-learning how to nurse. Probably less crying, too. But to fix it in a child between 2 and 10 involves general anasthesia because they cannot be relied upon to hold still for the snip.

I don’t recall it being a hard decision to make. If I recall correctly, HG and I were on the same page — that the tot needed to have it done, though the idea of surgery was not exciting to me. So, when Tater was about ten days old, he had his done, and about 4 months later, the tot had hers done.

And that is the end of this chapter.

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