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.



People Are Different and That’s OK

I’ve written before how Mira sometimes struggles with having an older sister with autism. Now that summer break is here, Cordy is her most frequent companion, at least until summer camp begins. She wants Cordy to play with her all the time, while Cordy would be completely happy to be left alone with a stack of books and the computer all day long. I’ve been playing referee between the two of them, trying to find a middle-ground of convincing Cordy to play with her sister a little, while also demanding that Mira give her sister some space when she needs time to herself.

On Monday I took Cordy to her weekly occupational therapy appointment. Mira had to come with us, since Aaron was not home from work yet. She gets terribly bored sitting in the waiting room, even with the iPad, several kid magazines and TV in the room. Since the weather has been nicer lately, she asked if we could go to the park near the office while we waited. We’ve done this a couple of times, and it’s definitely an easier way to wait out the appointment with Mira. Burning off some of her energy was preferable to the eventual trouble she’d get into in the waiting room, so I agreed and we went to the park.

Swinging at the parkMira loves the swings at this park, and has been working hard at learning to keep herself in motion without being pushed. I usually give her a few pushes to get her started, then sit on the swing next to her and provide encouragement.

This time, a few minutes after we were settled on the swings, another girl about Mira’s size wandered over to the swings, clutching a doll in a blanket. She looked at the empty swing on the other side of Mira, then turned to look across the playground and yelled out “Ma-ma! Sfing!”

Her mom, a disembodied voice on the other side of the playground equipment, yelled back, “I’m not pushing you!”

Mira, ever the chatty child, immediately called out to the girl, telling her that swinging was so much fun and she’s been learning how to keep herself going by kicking her legs out and pulling them back and that it really wasn’t hard at all. The girl nervously eyed the swing and clutched her doll tight, looking back and forth between her doll and the swing.

She then carefully set her doll down on the ground and sat in the swing, looking around as if she didn’t know how to get it started. The girl said something that sounded like “I like to swing sometimes,” but I had trouble understanding what she said.

Mira didn’t lose a beat and started telling the girl her name and then instructions on how to properly sit on a swing and where to hold the chains. (All while continuing to swing, of course.) Mira also volunteered me as a swing pusher, but having just heard the girl’s mom state she wouldn’t push her, I worried about getting involved. What if the girl’s mom was trying to make her learn on her own? I suggested she let the other girl try on her own first.

The little girl lifted her feet, but only swayed gently back and forth. She tried to give herself a little push-off with her feet, but didn’t get any momentum.

The little girl said a few sentences back to Mira, some not entirely directed to Mira but just said to the open air, and it was then I really noticed that she had a lot of trouble with clear speech. She also was unsteady as she moved, more so than many kids her age, and seemed to struggle with getting the strength to push herself to a starting swing.

I wondered if Mira would notice her new friend was different? So far, Mira was still caught up in her monologue about how to swing. But then she noticed the little girl wasn’t going anywhere. “Do you need a push?” she asked the girl. The little girl nodded, her long hair falling over her shoulders.

“Mommy, I need to stop,” she told me, as she tried to stop swinging without losing her flip-flops. She slowed down a little, then got impatient and popped out of the swing, stumbling a little from the unexpected momentum of stepping out of a moving swing.

Mira spun around to look at the girl, determined look on her face as she sized up the child in the swing, and then flashed a big smile at her and said, “OK, I’ll push you. Make sure you’re holding on!”

And then she pushed the little girl on the swing, instructing her the entire time when she needed to kick out her legs and when she needed to pull back. The girl tried to comply but wasn’t really coordinated enough. That didn’t stop Mira from yelling out encouragement, just like I had done with her two weeks prior. “Kick out! OK, now pull your legs back! Good! Kick out faster now!”

They both struggled to get momentum for her swing, and while I could see the girl was working very hard to stay balanced in the swing and follow Mira’s instructions, she was also having a fantastic time. Mira was all smiles as she pushed this stranger.

Once the girl was high enough, Mira jumped back into her swing, begging me to give her a quick push so they could swing together. Her new friend slowed down quickly, and Mira again asked me to push the girl. This time I did give her a few pushes, hoping no one would get upset with me for touching someone else’s child.

A few minutes later, the other girl slowed down again. She got out of the swing and picked up her doll, cradling it as she looked back and forth between Mira and the large playground structure next to the swings. “C’mon, swing some more,” Mira said to her as she continued swinging.

The little girl looked down at the ground and then stammered, “Play with me? There?” She pointed to the twisty slide.

Mira stopped her swing without hesitation. “Sure! Can you climb the stairs?” And off they ran to climb up the fort and slide down the slide. Mira, the kid who never wants to leave the swings, was happy to abandon them when this sweet girl asked her.

For the next ten minutes, Mira and her new friend played together. When the girl dropped her doll as she tried to climb out of a tunnel, Mira quickly came to the rescue and retrieved the doll for her. They both went down the slide several times and laughed at how it made their hair stick out.

Soon it was time to go, and I told Mira we had to go get Cordy from her appointment. Mira said goodbye to the other girl and gave her a big hug, reminding her to keep practicing on the swings. The girl looked so sad to be losing her friend, but then brightened when Mira hugged her.

As we went back to the office complex, Mira said, “I’m sad I had to leave my new friend. She was fun. I don’t know her name, but she’s still my friend.”

“I know you’re sad to leave her,” I replied, “And it was very nice of you to help her swing and teach her what you know. I’m proud of you.”

Mira thought about that for a moment, then took a deep breath and gave her “The More You Know” speech about the topic. (I swear she does this whenever she senses a lesson to be learned. Anyone who has spent time around her will totally know what I’m talking about.)  “Well, you helped me learn to swing. And it’s good to help other people who can’t do things you can do, right? Like Cordy can’t put toothpaste on her toothbrush, so I help her. And that’s OK, cause sometimes we need help, even if we look big enough to do something.”

“You’re totally right, sweetie.”

She wasn’t done yet. “And my friend talked kinda funny, too, but I used to talk funny when I was younger, right mama? You said people couldn’t tell what I was saying and I had to learn to talk right? I didn’t know everything she was sayin’ but then I thought that maybe she’s still learning to talk right, too! And that’s OK.”

(Yes, Mira likes to sum things up with “And that’s OK.” She could sum up just about any difference between people with “And that’s OK.” I probably taught that to her.)

At that moment I thought my heart would burst out of my chest with love and pride. The little girl she now called her friend was different, but Mira didn’t let that stop her from playing with the girl, and helping her when she needed it, so they’d both have a good time. She was kind and patient and helpful – I couldn’t possibly ask for more from my wise six year old.

Mira really has benefited from having an older sister with autism, even if she doesn’t realize it yet. It’s possible she’d be equally as sweet without a special needs sibling, but I think she has a unique insight into differences because of Cordy. I’m certain she helps Cordy every day by being constant social skills practice for her.

Now it’s clear to me that she has the ability to help others, too. That little girl at the playground had a friend to play with: a friend who helped her swing without judgement, encouraged her successes and never once asked why she talked funny. And that little girl helped Mira, too, giving her someone (besides me) to play with and making her very happy. They had so much fun together, like any two kids could.

Mira now hopes that little girl will be at the park next week. I do, too. And that’s OK.



Six: The Years Are Going By Too Quickly

Today, Mira woke up to greet her first day as a six year old.

I may have cried a little.

It doesn’t seem possible that my youngest daughter is turning six. That six years ago I went through 20-some hours of labor, after being nearly a week past my due date, to meet my fashionably late daughter who would count that as the beginning of a trend of doing things her own way.

She was an adorable baby. I remember how clingy she was – she liked to be touching me at all times, and still does that today when she’s feeling insecure and becomes a “space invader.” We couldn’t persuade her to do anything as a baby – it was all accomplished due to internal motivation. She watched me eating and demanded solid foods for herself. She learned to crawl because she wanted to get to Cordy’s goldfish crackers. (I’m sensing a food theme here…) It took extraordinary effort to get a smile out of her – always so serious, soaking in everything around her as if she was silently judging us all. Except for Cordy – she would always brighten up and smile for her big sister.

Mira at 11mo old - always seriousWhy so serious, baby?

It’s hard to tell that there was once a time when Mira couldn’t speak clearly. Her speech is still a little difficult to understand, but not much worse than the average kindergartener. Gone are the days of speaking mostly in vowel sounds only, and while she still occasionally substitutes some consonants, she gets her point across. Therapy helped her recover from speech apraxia, and she has proven that by encouraging her to talk, we will never again get any peace in this house.

Now she’s six. She’s not my baby anymore. She’s a kid, with her chubby preschooler limbs replaced with long arms and legs, her face thinner, and looking more grown up every day.

Mira at threeI miss those curls, too.

Five was a big year for her: she was off to kindergarten, she lost her first (and her second) tooth, she went to Disney World, she rode her first big roller coaster, and she’s started learning to read. It’s been an exciting year.

She had a birthday party this weekend. Well, three parties actually. Friday night we had an informal dinner with Aaron’s family, where we just happened to have cake and presents for Mira, too. Then Saturday was her “official” party. She requested a party at Chuck E. Cheese and invited all of her friends from school. Ten kids were with her to celebrate, and she effortlessly spent time with all of them, running off to play games with different kids every few minutes, making sure no one was left out. She’s a social butterfly, always needing other people around her at all times.

blowing out her birthday candles

And then yesterday we went to a family reunion, where again there happened to be presents for her. She didn’t mind that she didn’t know most of the distant cousins in the house. She just assumed they were all there for her birthday, too. Why wouldn’t everyone celebrate her birthday?

Her greatest strength, and greatest flaw, is her sensitivity. She can read people with ease, quickly coming to a friend’s side when needed and trying her very best to be a good person and do what she thinks is right. But that skill has given her tissue-paper skin around her ego, with her emotions bubbling just under the surface and breaking through at the slightest tilt in any direction.  When Mira laughs, it’s hard not to join in and she makes everyone around her feel happy. When she feels the smallest slight, the world is ending and nothing I do can console her. Tears can spring from her eyes with no warning at all.

She continues to have that inner drive pushing her forward in life. She wants to see it all, do it all, and when she’s really determined, she’s not afraid at all. If she is focused, she could rule the world. My only fear is that she’ll discover she doesn’t need us long before we can’t live without her. I will forever be asking her to not grow up so quickly, to enjoy this moment and this age, and she will likely be trying to do more, see more, be more before I want her to.

I miss the baby, but I love the girl she’s become and the young woman she’s turning into. She’ll have to tolerate her emotional mother for some time to come, watching her mature and wishing the clock would move just a bit more slowly to give me more time with her as a five year old, a six year old, and more years to come.

Six years. Just…wow.

Jedi Mira at Disney World



Happy Mother’s Day!

How was your Mother’s Day? Mine started out far too early with the chirp of a smoke detector at 4:30am. At first I was dreaming and heard it in the dream. Once I realized that it was impossible for my car to have a chirping smoke detector, I woke up and then tried to determine if I had dreamed the whole thing or if it was real.

Chirp.

So then I began the process of positioning myself in different rooms, listening to determine which smoke detector had the low battery warning. Once it was found, Aaron replaced the battery and we both went back to bed. Only I slept poorly after that. Ugh.

When I finally gave up on trying to have any meaningful sleep hours later, Mira was ready to tackle me with a Mother’s Day hug. Homemade cards and gifts were part of the celebrations.

Skylanders are totally cool for Mother's Day, right?

If you can’t read Cordy’s card, it says, “Dear mom, Fire types are red. Water types are blue. Flowers are nice. And I love you!” That’s probably the sweetest Skylanders Mother’s Day card I’ve ever received. Bonus points for making it rhyme.

Aaron fulfilled my requests for a Mother’s Day gift that was practical and didn’t add to the clutter in our house. I received a membership to Massage Envy, so I can have once a month massages for my oft-injured back. He wins.

I’m never quite sure what to make of Mother’s Day as mom. Should I want to spend the day with my family? Or should I want to spend the day away from them, doing whatever I’d like? Since I also have a mother, I have an obligation to her, too, so then it isn’t my own day, right?

In the end, it’s always a day balancing family obligation and relaxing. It always goes by too quickly, too.

We visited with my mom and grandmother, going out for lunch together. My grandmother has slowed down since she had a stroke a few years ago, but she insists on being as independent as possible. She now requires someone’s arm to hold onto to steady herself while walking – a development that still seems so odd to me. She’s always been so strong and served as the no-nonsense matriarch of the family. But she still smiles warmly at my kids’ antics and lets them tell her the same bad jokes over and over. (To be fair, I don’t think she hears the jokes every time – that probably helps.)

I’m always happy to spend time with my mom, too. She was my rock growing up – the one person in my childhood that I could count on – and even though there’s plenty we don’t agree on, I still seek out her advice on practically everything. She gives far too much of herself to everyone else, and I worry that one day she’s going to completely exhaust herself by helping others and ignoring her own needs. But it’s hard to tell her to stop being so generous with her time and money, especially since so many people depend on her help.

I occasionally complain that she spoils Cordy and Mira too much when they’re with her, forgetting that she was fairly lenient with me, too. It’s no wonder the kids love to spend time with her – she encourages them to roll down hills, teaches them how to plant seeds, and lets them have ice cream with practically every meal.

Kids and grandma on Mother's DayWere it not so wet outside today, she probably would have taught them to pick asparagus with her.

After leaving my mom, we stopped to visit briefly with Aaron’s step-mom so the girls could give their Bubbie her Mother’s Day card. Like my mom, the kids love all of the creative pursuits they get to do with their Bubbie.

The rest of the day was a typical Sunday evening: a little quiet time, dinner, bedtime for the kids, and watching some TV into the evening while working on the computer a bit. Successful day? Absolutely.

But Mother’s Day, to me, is also about the two beautiful little girls who made me a mom. I’m so grateful that becoming a mother wasn’t the struggle for me that it is for some. We wanted children, we had healthy children…it was that simple. These two drive me nuts sometimes, they fight with each other and make messes, but they also give me purpose, shower me in love, and have taught me so much.

I’m so lucky to have my family.



Adventures in Adult Acne

When I was recently at the dermatologist for my twice-a-year mole check, the assistant asked if I’d noticed any changes with my skin. I told her the few places I thought had changed, and then half-jokingly added, “Oh, and my chin has now become home to several monster pimples.”

She then began asking me several questions about my chin. I continued to not take my pimple issue seriously, telling her how I’ve never in my life had these large, deep (and painful, to be honest) pimples before and I guessed it was probably part of the joy of growing older. You expect the grey hairs and wrinkles, but no one ever tells you about the thinning eyebrows, whiskers on your face and neck, and pimples that also appear in the second half of your thirties. (Sexy, right?)

I never intended my casual mention of my chin acne to result in a full discussion with my dermatologist about hormonal changes in our thirties and how it can result in acne coming back. Wrinkles and acne – so not fair. I fully expected to be told that Clearasil isn’t just for teens, but instead she recommended a prescription cream called Aczone to help ease and hopefully prevent some of the acne breakouts. I’m not a vain person, but I’m also in favor of not having painful breakouts on my chin, so I agreed to try it.

As her assistant handed me the slip of paper on the way out, she also handed me a discount card from the drug company. “Oh, I have insurance,” I told her.

“You’ll probably still need this,” she replied.

She wasn’t kidding. When I went to pick up my prescription, I was told it was $75 – with insurance. For an acne cream? So I handed over the discount card, which took the total cost down to $25. That was far more reasonable. It wasn’t until I looked at how much I saved with insurance that my jaw dropped:

It cost HOW much?

Again, I ask – for an acne cream? Is it made from unicorn tears filtered through a golden, diamond-encrusted sieve? How can an acne cream seriously cost so much?

But wait – it gets better!

Since I’ve never heard of this stuff before, I carefully read through the side effects, cautions and warnings. (As we all should.) A few things caught me by surprise. First, whatever this stuff is, it’s not to be used while pregnant or breastfeeding: “This medicine is found in breast milk. Do not breast-feed while taking this medicine.” No worries there for me, but I’m again wondering what chemicals are in this cream that make it even more toxic than the pesticides on our food?

The side effects were pretty standard: “Side effects may include dryness, oiliness, peeling or redness of the skin.” Wait, I thought this was to make my skin look better? It continued:

Contact your doctor immediately if you experience dark urine; fever, chills, or persistent sore throat; mental or mood changes; numbness, swollen, blistered, or peeling skin; severe stomach pain or vomiting; shortness of breath; sudden back pain; suicidal thoughts or attempts; unusual tiredness or weakness; or yellow or pale skin.

And those weren’t even the allergic reaction symptoms. No, flu-like symptoms, blistered skin, stomach and back pain, mental changes and thoughts of suicide are just things that could happen to you even if you weren’t allergic to this topical cream for acne.

Then there was this warning in the leaflet:

Do not try this at home.I wasn’t planning on it, but good to know!

Let’s be honest – you know they only put those warnings in there because someone has tried it. I don’t want to know what the thought process was that led to someone trying that.

Folks, if you think you have acne in your vagina, please go see your gynecologist, because I’m pretty sure that’s not acne.

Ewwww

On the upside, this prescription really is magic. When applied to a newly forming red spot on my chin before bed, it’s already less painful and less red the next morning. I don’t know if it’s $600 worth of magic, but I’ll say I’m impressed as long as I don’t develop shortness of breath or suicidal thoughts.

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