Looking Ahead

Cordy had her first meeting with a behavioral therapist  last week. Her psychologist had recommended setting up a meeting, but it had slipped my mind until last Wednesday when the therapist called and asked if we could meet that Friday. At our house. (Yes, I frantically cleaned.)

The meeting went well, I think. The behavioral therapist wanted to get a general assessment of Cordy’s personality, as well as what she’s struggling with and where she needs help. Since it was at our house, I expected that Cordy, having been tired already from summer camp that day, would probably let her guard down and just be herself.

Cordy is a smart kid. She’s aware that she’s different from other kids and when Cordy is at school or summer camp, she tries her best to hold in a lot of her quirks. Her teachers see very little stim behavior in the classroom, with only a little more of it on the playground. She rarely snaps at anyone at school. But at home, she knows she’s in a safe space and usually lets off steam as soon as she gets home. She’ll often flap, pace, make up a story to herself, or isolate herself with a book or computer time. If we ask anything of her, she’ll sometimes overreact and snap at us.

Meeting the therapist, however, she kept up the in-public facade for most of the hour. She was sweet and charming, answering the therapist’s questions and asking several questions of her own. There was no stimming, other than a little bit of wrestling with the dog at one point.

But the disconnect was still there. Cordy had a book in her hand nearly the entire time, and if she lost interest for even a moment, her face was quickly hidden behind the turning pages. She became loud and almost shriek-y when talking about the things she fears (bees, bugs, roller coasters, Kaos in Skylanders, the dark), although she wouldn’t discuss the real social anxieties that make it hard for her to function at times.

And she became upset with me when I told the therapist about where she needed to improve in her life skills, listing age-appropriate self-care tasks and basic safety precautions that we’d like her to do on her own but have seen little success. Cordy tried to shush me, saying I was “giving away all of [her] secrets.” She’ll gladly talk superficial fears and tasks that she has trouble with, but when we try to talk about real anxieties and areas of deficit, she becomes hyper-sensitive and doesn’t want anything said. My daughter, the perfectionist. The therapist said that’s a very common trait of gifted and twice-exceptional children – they hold themselves to nearly impossible standards and can’t stand for anyone to think they’re not perfect.

She likes to win.And most kids just accept an end of the school-year award and stand on the stage. Cordy is ready to give an acceptance speech for being The Best. We should probably add modesty to our list to work on.

It was surprisingly difficult to talk so much about Cordy’s issues. I usually try to balance everything out with a positive quality for every problem area, like “Well, she doesn’t really have any close friends…but she’s so sweet to other kids and can tell great jokes!” Not to mention, Cordy was sitting right there in the room with us – what if she was internalizing everything I said? Sure, she was mostly absorbed in a book when I was talking and likely heard little of the conversation, but I was carefully considering every word choice in the moment so Cordy wouldn’t think I didn’t like her for her faults. I danced around each topic, pointing to “areas to strengthen” and “ways to help her be more successful” instead of “problem areas” or “bad behavior.”

And I wasn’t sure where to draw the line in sharing so many of my daughter’s weaknesses – did I sound like the hypercritical parent who considers her child “broken” over a bunch of faults (oh, I hope not!) or did I dismiss her problems too much and make it appear that she really doesn’t need any help and I’m making a big issue out of nothing? I named several problem areas (that I didn’t call problem areas), big and small, specifically to have them said out loud to a professional, so that we might then find solutions to overcome these issues.

The therapist listened intently and took a lot of notes during our discussion. She plans to consult with the psychologist to determine where to begin, and then we’ll start working on learning new adaptive skills in two weeks. I’m hoping this will be a new period of great progress and growth for Cordy. I only want for her to be better prepared for the world around her and help her better cope with her peers and the outside world before she reaches (oh…it’s hard to even think about this) puberty.

Because we all remember middle school (some of us would rather not), and I think few would say that the majority of 11-13 year old kids are tolerant and accepting of peers who are different and don’t quite fit in. I’d like to be proven wrong on that statement, but I have my own emotional scars from middle school and I’d also rather prepare my daughter for what’s ahead.

I don’t expect or want her to conform to the behavior of her peers, although I do want her to better understand “typical” social behavior if only to know what is OK from her peers and what is rude or harassing behavior that she should not tolerate. And a little part of me wants her to learn the social game, if only a little, so that she might find enjoyment in friendships.

We’ll see how this goes, but I’m hoping for good results.



Birthdays Don’t Stop To-Do Lists.

Today I’m 37 years old. Light the candles, dim the lights! Sing it with me, everyone!

Hap-py birth-day to meeee,
I’m go-ing to the BMV
To get my new li-cense
For a $25 fee!

(And don’t forget the registration renewal!)

Yes, for my birthday I’ll be buying my own present – the gift of continuing to drive. On the upside, four years ago I was heavier and so this photo should be an improvement over the previous one. Then again, better is such a subjective term when it comes to a driver’s license photo. I mean, getting stung by a bee may be better than being bit by a black widow spider, but that doesn’t mean either experience is desired.

Driver's license photos never look goodI think there’s been some improvement since that photo.

It’ll be fun to update my weight on the license and not “accidentally” forget 30 pounds for the official record. For once my weight is currently lower than what’s listed on the card. Oh, who am I kidding? I’ll probably still lie and set a lower goal to aim for. They never question the answer I give, which is why I’ll never complain about the wonderful people who work at the BMV.

And just in case that wasn’t un-birthday-like enough for the day, I’ll be frantically cleaning the house in-between working to get ready for a late-afternoon appointment with a behaviorist for Cordy. When I set up the appointment, I didn’t realize she intended to meet at our house, or I might have made an excuse about being busy until late next week to buy me some time.

I’m sure I’m not alone in having a panic attack when a professional comes to the house for the first time. Our house is cluttered, I’m never on top of the dust, the carpets have a few stains, and there are some cobwebs in hard-to-reach corners, but it’s not unsanitary. And yet I still have this moment of freaking out that this woman will come into our house and quickly make a mental note to call child services for raising our children in an unfit home. So I toss all the clutter in boxes and shove them in the closets or in the garage, hoping she’ll think we’re a respectable family.

(I know, I know…hiding clutter still wouldn’t make us respectable. Quit laughing.)

I’m not sure what to expect from this behaviorist. She works with the psychologist who evaluated Cordy, and the psychologist recommended that Cordy begin behavioral therapy soon to help with adaptive skills. (Daily life stuff that she refuses to do on her own.) I’m hoping the initial meeting will be short since, you know, birthday.

So that’s what’s ahead for my birthday. The kids get the Chuck E. Cheese birthday parties, while the grownups realize it’s just another day and there’s stuff to get done. However, gifts of Jeni’s Ice Cream in Rainbow Frozen Yogurt will be graciously accepted for when the stress of the day is over.

And the one lesson I’ve already learned this morning about turning 37: apparently at 37 you just don’t care about being as critical and start liking some of the photos of yourself.

Not a bad selfieExhibit A

 



Because I Know You All Care About My Health

You do care, right? Or at the very least, you’re interested in learning about my health woes so you don’t make the same mistakes. Hey, I’m OK with that. I’m a giver.

Not only did I have a big area of skin removed from my back last week, but on the same day I had an appointment with my primary care doctor as well. During the appointment, I mentioned that I have been feeling so tired all the time, even when I try to get enough sleep, and nothing seems to help. She decided that it would be best to have bloodwork done to check if something might be imbalanced and causing my fatigue. Tuesday really was human pincushion day.

I expected that maybe my thyroid was out-of-whack, which was why I was tired and struggling to not gain weight. Or maybe I was anemic.

The results were back on Friday, and for the most part they were normal. Except for one line of the report: Vitamin D. Last year when she checked my vitamin D levels they were very slightly low, and she recommended including more foods with vitamin D in my diet and taking a multivitamin. I’ve been doing that as much as possible, but the new test results showed my vitamin D levels were much lower than last year,  outside of the recommended levels and into “deficient” classification.

I’m not quite sure how my vitamin D levels managed to go even lower after I started taking a multivitamin more regularly. But if it’s related to feeling tired, well, I can’t question the results. I’m sluggish all the time. Exercise will give me energy, but finding the energy to get started is hard. And once I do start moving, my muscles want to give out on me far sooner than they should.

Vitamin D - Super Vitamin!Since getting the blood results, I’ve been reading more about vitamin D and it’s link to different health issues. I knew that being deficient in vitamin D could lead to weak bones, but there’s also solid research linking it to muscle weakness, metabolic disorders (including weight gain, increased risk of type 2 diabetes, and having difficulty losing weight), and fatigue. Huh. I didn’t realize vitamin D was the super-vitamin. Look out B-12 – vitamin D is coming to take you out of the spotlight.

I now must focus on getting more vitamin D. And this is where it gets ironic. Vitamin D supplementation is good, but the best way too get vitamin D is from the sun. Spending time in the sunshine is the easiest method for building up vitamin D in the body – the skin soaks in the sunshine, which triggers the body to make it’s own vitamin D in large quantities. Supplements work, but the body’s natural production is far more efficient and requires less time to raise vitamin D levels.

So spending more time with my skin exposed to sunlight would be a big help. However, wearing sunscreen blocks 95% of the vitamin D production. Which means to get my vitamin D sun therapy, I’d have to be in the sun for 15-30 minutes a few days a week without sunscreen. But because I’m a high risk for skin cancer, sunscreen is a must for being outside.

I’m damned if I do, damned if I don’t.

(And we won’t even discuss the fact that 15-30 minutes in the sun without sunscreen would have me a painful shade of pinkish-red, because this pale girl gets a pink flush just thinking about the sun.)

My doctor knows sunlight therapy isn’t an option for me, and didn’t even recommend it. I’m now on 5000 IU of vitamin D a day for at least the next six months. That seems like a lot to me. For reference, the average recommended daily value is 400-600 IU a day. She believes that getting my vitamin D levels raised should give me more energy and an overall better feeling of wellness. I’m willing to try just about anything to give me the energy to get more done.

I’ve been taking my supplements (they’re itty-bitty liqui-gels, so they’re easy to take) for five days now and I’m not sure when I’m supposed to notice any difference. I’ve been more awake the past couple of days, but that could be just from having the kids at camp and not being distracted when I work. I’ll re-assess in a few weeks to see if I think it’s making a difference.

I wouldn’t be surprised if more people have lower vitamin D levels now that sun safety has become such an important topic. We’re all wearing more sunscreen and trying to cover up in the sun to avoid skin cancer, but are we possibly setting ourselves up for other problems? I doubt  many adults drink a lot of vitamin D fortified milk, and there aren’t a lot of foods with high levels of it.

Here’s hoping this is the key to what’s been dragging me down.

Holy-Moley update:

The incision from having my mole and surrounding area removed is healing nicely. I’ve had to remind myself not to twist or bend too much, or it pulls at the stitches and hurts.

A few people have asked what it looks like. I’m not going to insert the photo in this post, because I respect that there are some squeamish folks out there who really DON’T want to see it. But if you do want to check it out, you can click here to see the incision. It’s about 3″ long with several stitches, just an inch or so away from my spine. It hurts if I lean back on it the wrong way, and sometimes the stitches poke me. I can’t wait to get them out next week.

The photo is, for me, a fantastic reminder of why sunscreen is important. If you or someone you care about has any moles that you’re concerned with, the image of my incision can be great motivation for making an appointment with a dermatologist.

Early screening saves lives – this will leave a nasty scar on my back, but I also feel good that we caught it before it had any chance to turn into cancer.

Edited to add: Just in case you think I’m endorsing the brand of vitamin D in the photo – liqui-gels were recommended, and this brand was selected because I recognized the name and it was on sale when I was at the store. I mean, I’m happy with it so far, but it’s not sponsored in any way.



No Really, Wear Sunscreen

It was just last month that I was reminding all of you to check your skin. Back in April I had a small mole removed, and when the pathology results came back, it was revealed that it was abnormal, but not cancer. I’ve had several moles removed that came back like that, so there was no surprise there.

But when they called with the results of this one, they said they’d like to take more of the edges just to be safe. That was a first for me, but this was a new dermatologist, so I figured she just did things differently. The man on the phone told me that this time it would be stitched closed. I’ve seen others who have had moles entirely removed, and they usually had one or two stitches in place – no big deal.

I went back to the dermatologist’s office yesterday, ready for a semi-repeat of the last visit. I suited up in my oh-so-stylish paper gown.

Rocking the Paper GownRocking the paper gown!

The nurse sat down with me and started to explain the results again, only her explanation seemed more…heavy. That abnormal mole was a special kind of abnormal mole. There are three types of abnormal: mild, moderate, and severe. Mild and moderate are often just watched with no further action needed. But severe, well, that’s abnormal cells that are as close to melanoma as you can get without actually being melanoma.

It’s not skin cancer, and might not ever turn into skin cancer, but there’s a much higher chance that it could. And since there was a very large mole (I’ve named it Bertha) that this smaller mole was now touching after hovering near it like a moon before (I’ve now named the smaller mole the Death Star), they needed to take both out, as well as a decent border around all of it.

So this wasn’t going to be a tiny spot with one or two stitches then? No, not at all. The nurse explained that there was going to be a scar, and due to the position on my lower-mid-back, it’ll likely be an ugly scar. It’s impossible to keep the scar small when that part of the body is constantly being twisted, stretched and pulled.

The nurse left, and I sat in the room alone, my mind racing with this new information. Suddenly I wasn’t feeling so “no big deal” about this anymore. This was serious, and this was seriously going to be a minor surgery. That abnormal mole was setting off the cancer spidey-sense for my doctor, so I possibly dodged a big bullet by getting it removed now. What scared me even more is that she had looked at that one back in the fall and wasn’t concerned, and didn’t seem too concerned when she biopsied it back in April after I insisted that it looked like it had changed a little more in six months.

I understand why they didn’t tell me all of this on the phone when they set up the appointment. I would have been a nervous wreck for the next three weeks.

When the doctor came in, she went over everything again, telling me much of what the nurse had explained. Football-shaped incision to remove all of the skin down to the fat underneath, with a double layer of stitches – the inner layer would dissolve, the outer layer would be removed in two weeks. The doctor demonstrated how she’d pull the surrounding skin together when stitching it up, and I joked that it was a good thing I lost so much weight in the past few years so she’d have plenty of loose skin. She also made a point to tell me that this would likely be an ugly scar. I replied that I didn’t have any plans of being a back model anytime soon, and I’m far past any years of wearing a bikini, so it was fine. Humor – easy to use as a shield when dealing with hard news.

The whole procedure lasted about 45 minutes. I expected one or two shots of lidocaine to numb the area, but it was more like 10-12. The bee-sting feeling slowly faded to nothing, and they were then ready to begin. I laid on my stomach, wondering if I needed to not breathe too deeply so I didn’t affect the depth or direction her scalpel was moving.

(Warning: This next paragraph is graphic – if you’re easily squeamish, skip to the paragraph after it.)

I felt the nurse pressing against my back several times, and when she sat the gauze on the tray I realized she was dabbing away all of the blood coming from the area. Then the doctor pulled out a little tool that made several beeping noises. I wasn’t sure what it was at first, until the smell hit my nose. She was cauterizing blood vessels – the smell of burning flesh is hard to mistake with anything else. There was a lot of blood.

(OK, the worst is over, squeamish people continue reading.)

As she was finishing the stitches – and that part took awhile, too – I realized this was likely going to hurt when the numbing wore off , and started asking about restrictions while it heals.

Clean it daily, apply petroleum jelly to keep it moist and keep it bandaged. No ibuprofen or alcohol for a few days because of a risk of bleeding too much. If it starts to bleed, apply pressure and call the doctor or go to the ER if pressure doesn’t stop the bleeding.

Limited movement and no lifting for the first couple of days, too, then slowly allowing more movement, but cutting back quickly if it starts to bleed. No stretching or strength training exercises for several weeks – yoga is right out. Running/walking is OK in a week or so as long as I don’t twist too much in my torso when I run.

I realized my plans for exercising more have been temporarily put on hold because of this.

The new section of skin that was cut out will be sent to pathology again to confirm that there were no abnormal cells around the borders, and to take a closer look at any remaining abnormal cells in the sample. If the borders are clean, then all is well and I can go back to regular skin check appointments. If not…well, then I’m guessing we do this whole process again and take more out.

I have a large pressure dressing on my back that I’ll be changing for the first time today, and finally getting the first look at the stitches. As I got dressed in the doctor’s office, the pressure dressing was solid white. Two hours later I had already done too much, as I could see the blood in the gauze. It hurts, and I forgot just how much we use our backs for practically ANY movement.

Still…there’s a bright side to this story, and it’s an important one. It wasn’t cancer. OK, I guess I can’t say that for certain until the pathology report on the new skin cells comes back, but we’re pretty sure I’m good. Regular dermatologist skin checks are important for detecting changes early and removing anything suspicious before it could become cancer.

And wear your sunscreen. All the time. Especially if you’re a fair-skinned Irish-blood like me. My skin might not be trying to screw with me had I been better at applying my sunscreen and didn’t try to be tan as a kid.

Irish Girl SunbathingMy childhood summers, summed up in one photo.

The sun worship is long over in this house. I’ll admit to being more than a little scared of my own skin now. Will it decide to turn on me? Will I catch it in time? Could I have prevented this by taking better care of it when I was younger?

And if ever I need a reminder to wear my sunscreen daily and put it on the kids as well, I need only look at my back and the ugly scar that will be forming there.



Another Day, Another Evaluation

Yesterday I spent the morning in a psychologist’s office. No, not for me, although I think we can all agree I’d probably benefit from a visit. This was for Cordy. Her county service provider had told us last month that she was due for a re-evaluation by the time she turns nine in order to still qualify for county funding. Since things like social skills classes and other behavioral services are rarely covered in full by insurance, this funding is tremendously helpful.

She was last evaluated when she was four years old, which was when she received the PDD-NOS diagnosis. Yesterday we saw the same psychologist that we met with four years ago. I wondered if she’d remember the stubborn, curly-headed four year old from years ago, or if she’d even recognize her after she had grown and changed so much. I also worried that there was a chance that Cordy would try to fool the tests and appear perfectly typical, losing her diagnosis and possibly any future assistance.

It didn’t help my fears that she woke up that morning perfectly cheery and agreeable. She’s been an irritable crankypants for the past few weeks, easy to anger, wanting to be left alone as much as possible, but on the day when I was hoping a professional would see these behaviors, she woke up as Miss Sunshine, happy to chat, polite as can be.

Cordy has also become accustomed to testing. In this school year, she’s been evaluated twice for gifted education, and she also had a re-evaluation for the school district. At this point she likes the testing, and she’s also becoming self-aware of being different and wants to know more about it.

As we drove to the office, Cordy asked me, “Will this be like the other tests I’ve had this year?”

“Similar,” I replied, “You’ll probably answer a lot of questions from her, and you’ll probably be asked to solve some puzzles.”

“Oh good! I like puzzles. Will she tell me why I have autism and think different from others?”

Oh dear. “Well, I don’t think she can tell you why you have autism. But I’ll bet she’ll tell you that if you do think differently from others, it’s not a bad thing at all. We’re all different, and being different makes us all interesting, right? And she can probably help you understand things that don’t make sense to you, but I doubt she can do all of that today.”

That seemed to be enough for her, and she went back to reading her book. At the office, the doctor did indeed remember Cordy, and asked me to explain what’s changed since she last saw her. I didn’t think we had time for all of the changes, so I summarized as best I could. Cordy was already distracted by everything in her office, and started spinning in her office chair, then found a small ball and tried to bounce it off of the walls.

After we talked a bit, I was sent to the waiting room with a parent questionnaire to fill out while she evaluated Cordy. It’s so hard to describe all of your child in a series of questions that are answered with Often, Sometimes, and Never. I again worried how Cordy was doing in the office. When she met with the school psychologist earlier this year, he said he didn’t see any of the behaviors her teachers had reported and said that if he had only seen her for that one meeting and didn’t have any other data, he would never have suspected she was on the autism spectrum. Of course he also said Cordy asked him repeatedly how she was doing and would ask if she got certain questions “right” – being perfect was her goal, and she was trying to shape her responses to what she thought he wanted her to say.

I also had that awful voice in the back of my head saying What if she really isn’t on the autism spectrum and you’re just a bad parent? Despite having her diagnosis confirmed for us more than once, I still struggle with that absurd criticism that we’re really forcing a label onto nothing more than bad parenting, since she’s so high functioning. If we had only forced her to do more for herself and behave properly, blah blah blah. It’s a horrible idea that doesn’t deserve any of my energy, but it still pops into my head in times like these.

It felt like I was in that waiting room for hours, but after about 45 minutes Cordy came out to meet me. The psychologist explained that she’ll review everything and would write up her results and send them out to us in a few weeks. My impatience got the better of me, though, and I asked if she could at least give me initial impressions – does my daughter still have PDD-NOS or was there anything else she saw?

The doctor said it’s without a doubt that Cordy is on the autism spectrum. She’s using the new DSM 5 guidelines, so it would be called Autism Spectrum Disorder now, but she said it’s likely under the old DSM 4 she’d fit better under the Asperger’s diagnosis at this point. She wants to get Cordy enrolled in a social skills group in the fall, and she wants to set up a meeting with us and her behaviorist as soon as possible.

Apparently when she asked, “What do you do if there’s a fire?” Cordy responded, “Call 911.” And then she suggested after you call 911 that you try to put out the fire. (facepalm) I’d like to explain that we’ve told her several times that the first thing you do in a fire is get out of the building, and the fire department even came to their school and taught them all fire safety, but the message didn’t stick with her. So that’s something to work on with the behaviorist.

I’m looking forward to reading the entire report, and I’m glad Cordy has been such a good sport through all of this testing. She’s an amazing kid, super-smart, and with such a unique view of the world. She’s got plenty of things she’s not good at, but don’t we all? If she can conquer some of her fears and better learn to live with other people around her (which…I get it. Some days I don’t like people very much, either.), there’ll be no stopping her.