Day Two of #BallGate Isn’t Going Well

Carrie is widely known for taking out her pent-up energy on a yoga ball. She’s popped five or six of them. Yesterday, she woefully stood before me holding a misshapen lump of latex and said there was something wrong with it. Yes, yes there was. There was a hole in this one, the poor ball number six or seven.

Instead of calling my husband to race to Walmart and get another one (like I’ve always done), I tried telling Carrie that she would have to wait until I went to the store again. I explained that payday only comes around once a week, and that she would just have to be content running back and forth in the hallway to get some of her energy out. She wasn’t excited, but she didn’t have a meltdown, either.

Now I’m the one enjoying all the thumping noises as she runs barefoot in the hallway below my office. I’m ready to WALK to the store and pay with liters of my own harvested blood. I don’t, of course, because I know this is good for her. To get an idea of what happens to these hapless yoga balls, watch this video…all the way to the end.

My Kid Isn’t Autism

This is a post that’s been a long time coming, mostly because I had to sit on it until I could retell the events without cussing up a storm. It all centers on a health issue Carrie’s been dealing with–one that is still not resolved–and our crazy efforts to get to the bottom of it.

In August, if you recall, she went through a bad spell in which she was in abdominal pain and couldn’t eat or drink anything. At the time, I did rant a little bit about the usually even-keeled doctor who was very dismissive of her symptoms, chalking them up to “the crud.” The maroon splotches under her arms? “She must have been scratching.”

It turned out to be more serious than all of that, even without a formal diagnosis. The CT scan we got courtesy of a middle-of-the-night trip to the ER showed her lymph nodes were going haywire. She was treated for the pain, and given a week off from school.

In October, it came back. Our same doctor dismissed it as menstrual cramps. The hospital did an ultrasound and found her gall bladder was leaking, which landed up as appointment with a pediatric gastroenterologist in the next state.

Here’s the too-angry-to-write-about-it story. The specialist in the next state was so focused on the word autism that she couldn’t do diddly-squat about the abdominal pain or the gall bladder. A nutritionist was called in to counsel me on proper diet. An ABA therapist from this hospital’s very exclusive autism center was called in to explain to me that with intensive therapy, they could get Carrie to eat fruit, despite the fact that she happily eats a wide variety of vegetables and does drink all-natural fruit juices. The specialist then came back to me with a course of treatment that included Zantac for acid reflux (which Carrie doesn’t have), a stool softener for hard poops (which Carrie doesn’t have), and a daily low-dose laxative to help ease the constipation (which Carrie doesn’t have). We clearly indicated on the very colorful poop chart–much to Carrie’s amusement–that her poops look “like this one” and that she goes every day, but yet this doctor treated her for acid reflux and constipation.

WHY? you may ask. BECAUSE AUTISTIC KIDS HAVE TROUBLE WITH ACID REFLUX AND CONSTIPATION.

Yes, the doctor treated her for these issues because she’s autistic, not because her CT scan, ultrasound, or lab work indicated them. In fact, she treated her for these problems despite Carrie looking her in the face and telling her (in her own way) that she goes to the bathroom just about every single day.

Then we have another kicker in this story. While waiting in one of several exam rooms that day, I got a text alert from my pharmacy telling me that Carrie’s medication was ready. “Oh, good. Her Risperdol. We’ll pick that up when we come through town,” I thought to myself naively.

No. When I got to the pharmacy a couple of days later to pick up the Risperdol, it wasn’t Carrie’s meds. It was the three prescriptions–Zantac, Senakot, and Miralax–that the doctor had ordered. Now, let’s do a little math.

I got the text message while still in the exam room. The medications were READY TO BE PICKED UP while I was still sitting there waiting to see the doctor.

THE DOCTOR HAD CALLED IN THE PRESCRIPTIONS TO THE PHARMACY I LISTED IN CARRIE’S PAPERWORK BEFORE EVER MEETING HER.

She’s autistic, and therefore she needs three medications to make her eat and poop. End of story.

By the way, we still haven’t figured out why Carrie’s gall bladder is leaking. We go to a different doctor at the end of this month to figure it out…five months after my daughter first started hurting.

 

#Autism and Menstruation: THINX About It!

It’s important to remember that the whole purpose of this blog is so I can share a tiny bit of insight into what works and doesn’t work in our household. We have one of the rare ones: one out of every five autistic individuals is female, and yup, we got a girl. That means there’s a painfully small amount of information out there about autistic girls, which I can’t really argue with too much… when you’re talking about only 20% of cases, it stands to reason that the research money and the publication process is going to shoot for the widest possible audience.

I’ve written in the past about Carrie’s experiences with her period. I’m sad to say that she started this process in fifth grade and she’s now in seventh grade, but she has yet to get a better handle on taking care of the issue herself. I still have to change her pads and actually wipe her when she goes to the bathroom, yes, even at school. Fortunately my job allows me to go up to the school everyday for a week each month and change her; however, there is a whole different story about having to fight for this right in Carrie’s IEP. Sadly, already this school year we’ve had one massive clothing accident at school.

NOTE! Parapros of the world, listen up! Carrie’s main parapro was ready to take her to her next class when she noticed the problem. She immediately grabbed Carrie from behind–completely ignoring the fact that this was all over Carrie’s clothes–and got her out into the hallway by playing a game. She kept hugging her and pretending to tickle her and just generally cut up until she could get Carrie away from the other seventh graders. She did whisper in Carrie’s ear and tell her what the problem was, just so Carrie wouldn’t be put off by the touching and the silliness all of a sudden. This woman is a FREAKING SAINT!

The day that incident happened, they took Carrie to the nurse’s office and called me to come change her clothes. I dropped everything and raced up there, and then we handled it. When I got back to my desk, I immediately Googled a product I’d seen advertised but wasn’t sure was right for Carrie.

They’re called THINX panties, and the company–founded by women and on a mission to also provide capable menstruation support for girls in developing countries, especially places where periods are so taboo that girls literally drop out of school when they hit puberty because there’s no way to keep clean and handle the issue–is getting a lot of attention lately online. Let me tell you why:

THESE THINGS ACTUALLY WORK! EVERY WOMAN IN THE WORLD SHOULD HAVE THESE! NO GIRL SHOULD BE SENT TO SCHOOL (I DON’T CARE WHAT COUNTRY YOU LIVE IN) WITHOUT THESE PANTIES!

There, I said it. Before I was Carrie’s mom, I was a middle school teacher in a school that didn’t have its own school nurse. Even better, I was also the cheerleading coach, which somehow made me the guru of all things girl. Other teachers would literally send students to knock on my classroom door if there was anything that even hinted of a girl problem. And truthfully, I didn’t mind. Again, I was the cheer coach and I have a degree to teach biology!

Back to THINX… these panties are $30 a PAIR, but I’d pay double if it would keep my daughters from having period blood on their pants in front of their classmates. They’re designed to still require feminine products, but they are made of some funky fabric probably given to us by aliens. This fabric completely absorbs anything the feminine product didn’t catch. Carrie has had two incidents with these panties where (sorry for being so descriptive, but this is about your daughter’s sense of self-confidence and independence) the blood had filled the pad and then some. In both cases, there was not so much as a faint hint of anything on her clothes. These panties completely absorbed or spread the matter. Yes, I did have quite a job to do with some wet paper towels on Carrie’s backside, but at least it stayed there and didn’t get on her clothes.

Now… as to why an autistic girl needs these, it’s because Carrie can’t change her own products. I come up to the school at a set time and change her so as to be the least disruptive to her day and to not call attention to her problem (“Hey, why is Carrie’s mom here, and why are they going in the bathroom together? Ohhhhhhhhhhhhh! Hahahahaha!” You see?). These panties make it possible for her to be clean and unembarrassed between those times. There have been months when I’ve actually had to come to the school twice throughout the day because it was a heavier stage. This month was one of those times, and THINX handled it completely.

Even better, since Carrie can’t tell me how her body feels (ie, crampy, PMS), I have to just go with a calendar-best-guess on when she should start, and then make her wear a pad just in case. That’s not comfortable! I can put these panties on her when it’s about that time, and then let her parapro text me to come put a pad on her if she did actually start her period.

Again… buy the panties! If you have any girl or woman in your life who is still menstruating, she needs these! Like I said, $30 a pair plus some change, but they’re awesome and the company supports girls’ education and rights worldwide. It’s a small price to pay!

But I’m Big… #Autism and Self-Reliance

This day was a long time coming. It all started back in May, at the end of the school year. On one of the last days of school, I picked Carrie up in the car rider line and instead of driving to go to the high school, I turned left out of the parking lot to head home.

“We’ll miss our sister,” Carrie said from the back seat. (No, she didn’t mean to imply I’d had enough of my teenage daughter’s angst and shipped her off to gypsies. She meant, “You’re forgetting to go pick up Ann.”)

“Ann stayed home. She didn’t have school today because she has all-As, so she didn’t have to take final exams. She’s at home.”

(Pause) “ALONE?”

I tried not to laugh at the tone in Carrie’s voice. “Yes, she’s a big girl. She stayed home alone while I came to pick you up.”

(Pause) “I’m a big girl.”

(Pause filled with heart-stopping dread) “Yes. Yes, you are. But… wouldn’t you be scared if you were home all by yourself, and no one was there?”

“No.”

“What would you do?”

“Play iPad.”

“So, you want me to leave you home by yourself sometimes?”

“Yes.”

“Well, maybe we’ll try that out…” I mumbled “someday when I’m dead” under my breath, but I’m afraid her sensitive autism ears picked up on that.

Of course, since school got out for the summer only a few days later, it quickly became a forgotten non-issue. The girls were home, I work from home, so no big thing. Right? RIGHT?

Wrong. Ann started majorette camp the last week of July, and on one of the many practice days when she was gone from sunup til sundown, I had to race to the gas station to fill up for our trip the next morning.

“I’m a big girl.”

(Oh crap. Not this. I’m not ready.) “Sure you are! You’re getting so tall!”

She didn’t buy it. She stared me down with a look that said, “You know what I’m talking about.”

“So, you want to stay here while I go to the gas station?”

“Yeah.”

“And what are you going to do?”

“Play iPad and watch my movie.”

“I see.” (More pausing…it’s become a thing in our house.) “Okay. Well, let’s get your iPad, and you show me that you know how to text me.”

STOP RIGHT HERE — You have to know two things. Carrie is almost 13, and the gas station is 1.1 miles from my house. That’s about to become really important. REALLY important.

Carrie got on the couch and showed me she could send me a text. I showed her how I could send her a text back. We texted back and forth several times. (I could have gone to the gas station, filled up, and drank an entire Coke by now, but that’s not the point.)

I’ll spare you the scene where I finally left the house. It involved a lot of “don’t get up off this couch,” “don’t open the door,” “you make sure you answer my texts,” etc.

I finally got in the car, sobbing in fear. I know she has to be able to do this, but I could barely think to get the key in the ignition. I finally did, started the car, backed up, and closed the garage door.

Then I texted her. From the driveway. You know, just to make sure she still remembered how to text.

I got the end of the driveway and was about to back into the street… and then I texted her. And waited for her to respond.

I texted six more times while traveling to the gas station, but don’t worry, I used Siri and spoke it into the phone. I was already shaking so hard I could barely think, so typing was the last thing anyone needed.

I got to the gas station, which is a really awesome family-owned place where they still pump your gas for you. There was an SUV at the pump that was almost done, and I pulled in behind it. I swear to you, the Camry behind me must have been sent by Satan, because not five seconds after I got in line, it pulled up behind me. I was stuck.

And the guy who owned the SUV in front of me and the guy pumping his gas had to have been long-lost cousins who’d been separated for years. They stood there talking while the car filled up… and talking… and talking… and talking after the car was filled and the hose was back in its holder… and talking… and talking…

And I couldn’t back up to get out of there.

I texted Carrie about ten more times while I waited, and finally I couldn’t handle it. I jumped out of the car, handed my keys to the guy who owns the gas station, gave him the cash, and yelled, “BRING MY CAR HOME TO ME BECAUSE I LEFT CARRIE HOME BY HERSELF!”

And then I took off running for home. In flip flops.

The flip flops got to be annoying after the first quarter-mile, so I took them off and kept going. Luckily, back in the day, I was a marathon runner so a mile shouldn’t have hurt too much. Unfortunately, that was many a year ago, so it hurt a lot.

I made it to my house and everything looked good from the outside. There were no flames shooting out of the roof, the doors weren’t standing wide open, the police weren’t there with a SWAT team… but that was just the outside. I raced up to the door and–realized my keys were with my car at the gas station.

“Carrie! It’s Mommy! Open the door!” Silence. “Carrie! Come on, honey, come open the door!” Silence. “Carrie! Look, it’s me!”

“I can’t get up. You said no.”

“Now I’m saying yes! Yes, you can get up now because I’m home! See? I’m home now!”

Carrie got up and came to the door and smiled. “I’m big! I stay home!”

“Yes, you did such a good job! But let Mommy in, I don’t have my keys.”

“You said no.”

“Yes, I did, and you’re a good girl for not opening the door! But now I’m home! You can open the door NOW because Mommy’s right here!”

She actually had to stand there and think that over. In my mind, I was already calculating how many hours I’d be on the porch until my husband got off work. She finally decided that Mom’s presence was able to override all previous instructions, and she moved to open the door.

And couldn’t do it. She couldn’t get the door unlocked. I was calling out instructions through the glass, but she kept turning it wrong or not far enough or whatever. Fortunately, my car came rolling up my driveway a few minutes later, followed by the owner’s wife in her car. I raced over to them and basically threw myself on their feet, apologizing. They were very understanding about my little freak-out, after the owner’s wife explained it all to him that is.

When I finally got the car inside and got in the house, I was ready for an emotional nap. Carrie came over to me, smiled, and said, “I’m a big girl.”

“Yes, you are!” I said, laughing. “Unfortunately, Mommy isn’t!”

It will be some time before I can try this again. It will also involve far more meticulous planning, like making sure the neighbors are home (and willing to sit at the end of their driveway to watch the house!) and making sure my husband’s about to get off work. I need to hide a spare key somewhere on the property, and probably install surveillance cameras…mounted on guard towers around my property if the homeowners’ association doesn’t object.

Basically, like I said, I’m not ready. I’ve spent almost thirteen years protecting her and keeping every single potential danger at bay, and I’m not ready to walk away from Carrie just yet. The weird thing is, ALL parents go through this, not just parents of autistic kids. It just feels magnified a million times when autism is a factor.

#Autism and Illness: When the Doc Won’t Listen to Your Kid

As parents, we always have to advocate for our kids, autism or not. It’s literally the reason they have us. But when autism is a factor, the job can get even worse.

FRIDAY – The school nurse called me to tell me that Carrie had been brought up to her office. No fever, but her throat was scratchy and red and she had some sinus drainage. The nurse even said, “She never has to come to me sick, so I just thought I should call you. There’s no need to come get her, I just wanted you to hear it from me since I know Carrie and I’m not sure she would tell you when she got home.” (Yay for Nurse of the Year!)

SATURDAY – Carrie laid around the house. She wouldn’t finish her french fries, which right there is my fault since that should have signaled to me that Armageddon was upon us. She spent most of the day lying in the hammock in my office, just kind of hanging out with the blahs. At one point she did say her tummy hurt, so I gave her a Tums.

SUNDAY – “My tummy makes me feel like I can’t walk.” That’s her description of how she felt. She kept asking for another Tums, which is weird since they were the strong peppermint flavored ones. When she couldn’t tell me the last time she’d gone to the bathroom, I figured it was plain old constipation (happens to us all). I ran to the store for some Milk of Magnesia and a Fleet’s enema. After explaining how this craziness was about to go down, Carrie did cooperate with the enema but literally nothing happened. As you’ll see, it turns out that constipation wasn’t the problem. I’d also bought her some prune juice… she took one sip and projectile vomited it into my hair, all over our legs, and all over the bathroom walls. Carries is NOT a good puker since she basically turns into a lawn sprinkler with no idea where to make it land.

MONDAY – Kept her home from school and called for a doctor’s appointment from a doctor we otherwise like. He’ll be the first to tell you that he doesn’t know much about autism, but he’s good at treating me like someone who does. He also understands I have a degree in biology, and doesn’t try to talk down to me. He evaluated Carrie, did NO lab work, shouted his questions at her like she was deaf instead of autistic, and declared it the crud. Now, at this point, Carrie stopped eating two days before and getting her to drink anything was like pulling teeth. She’d lost all energy and just slept. He told us to get some over the counter Zyrtec and Mucinex, and she’d be fine.

MONDAY PART TWO – Got Carrie home with the OTC meds and a slushie from Sonic. She drank a little of the slushie, just enough to turn the next round of vomit a brilliant blue color. When I put her in the shower to wash the vomit off of her, I notice maroon splotches under her armpits. I called the doctor’s office back, they asked me to bring her back up there, the doctor declared that she must have an itch and has been scratching… her armpits. He did call in some phenergan, which we gave her but didn’t help her any.

MONDAY PART THREE – I put Carrie in my bed that night, and despite the phenergan (which should have knocked her out) she writhed for the better part of an hour, unable to get in any position that made her stomach stop hurting. I told my husband I was taking her to the ER, but in his Southern boy way he said, “But the doctor said it’s just the crud!” (Get me started sometime on a subset of Southerns who refuse to question a doctor’s orders.) I had to call the National Guard: my mother-in-law. She’ll also be the first to do whatever a doctor says, but that’s when it’s her body. As soon as you utter the words that one of her grandkids is feeling anything short of 100% perfect, there had better be a Life Flight chopper in your front yard within three minutes.

I took Carrie to the ER and was shocked to find not only my mother-in-law but my father-in-law already there. Apparently, dear MIL (I do actually love this woman) had already taken her medicine and gone to bed, so she made my FIL wake up and drive her! After lengthy rounds of lab work and urine samples and even a CT scan of Carrie’s abdomen, we discovered that it’s actually mesenteric lymphadinitis (the lymph nodes under your jaw that swell up when you get sick? you also have some in your abdomen, and when you’re REALLY lucky, those swell up instead and keep you from eating, drinking, or going to the bathroom). It’s viral, and it will go away on its own, but it will take about a week.

UPSHOT: Technically, the first doctor was still right. She does have crud and drainage. But Carrie was going to writhe in pain for a week until this worked itself out of her system.

LISTENING TO HER: No one listened to her, and I’m ashamed to say that I’m in that category too. The moment she said her stomach hurt, the moment she said it hurt to walk, the moment I noticed she wasn’t running around the house or eating, THAT was when we should have been at the hospital. Instead, we made her wait Friday, Saturday, Sunday, and all of Monday. I could punch my own face for that.

But then when we did finally realize something was wrong, none of the people who were supposed to help her really listened, either. Don’t get me wrong, everyone was super nice to her, but they weren’t hearing her. When I told them that this wasn’t normal behavior for her, they didn’t listen to me, either. When the ER doctor told us what the problem was and said it would just have to run its course, he almost didn’t listen when I said, “Oh no, you’re not sending her home in pain. You’re going to do something about this.” He even wrote a prescription, one that I would not be able to fill for eight more hours until the pharmacy opened; I had to tell him I wanted a shot for her that would make this stop hurting. I had to ask for IV fluids since she’d had almost nothing to drink since Friday and she already only weighs 96 pounds as it is. I had to ask for a school excuse and a PE excuse, because she couldn’t tell them that herself.

Fortunately, this turned out not to be something far more serious. Unfortunately, this won’t be the last time I have to fight for her, but I truly never thought I’d have to fight for her basic medical care and treatment. Now we know that even her physical health cannot be met if we don’t stand up for her.

 

#Autism and Back to School – Assistive Academic Homework Planner

In our state, school starts back one week from today. Yes, this early. The really funny thing is everyone I speak to bemoans the fact that it starts so early, but every year this is the calendar! To be fair, we not only get out of school in May, we get a lot of breaks throughout the school year. It still amounts to the same number of school days as everyone else, but it still stings a little to be dropping my kids off at school on what would otherwise be a perfect day to go swimming.

Obviously, autism brings its own challenges to the whole back to school season. Have you ever tried convincing a child who won’t wear any footwear other than flip flops (yes, even in the dead of winter) to buy new sneakers for PE class?

When you add up all of the frustrations–the change in routine, the chaos of Back to School night, the worry that you finally got all of the teachers on board with your child’s struggles sometime last April only to have to start fresh with a fresh crop this year–it’s a wonder that we as parents of ASD kids don’t throw in the towel.

One of the things that I’ve changed this year is I’ve created a new planner for Carrie. When I say created, I don’t mean I printed out some calendars and had them spiral bound at Office Max. I mean I actually published a new planner, and it’s available for sale HERE. I was so tired of the rainbow-colored products with smiling cartoon children on the front cover. My daughter is going into 7th grade! She wants the same things her classmates have because, after all, what middle school kid LOVES to stand out and be weird?

Instead of a week at a glance, there are two days per page. That way it’s easy to flip through the week and see all of the assignments and blocks, but it’s not so overwhelming to see the week fill up with handwriting. There are spaces to write down homework, projects, tests, and things to remember (ie, bring posterboard on Friday), but my own personal touch was each day has a space to circle an emoji to tell the parent or teacher how today went. If it’s not a super smiley face, then there needs to be a conversation. If there are too many frowny faces in a row, it’s time to sit down together and figure out what’s wrong. Each week offers a geometric design line drawing for kids to color in, even if it’s just with their pencils, if they get stressed or overwhelmed, as well as plenty of white space for doodling to help them focus and calm down. There are also weekly trivia facts and silly jokes, just to hold kids’ interests.

The purpose of the planner is to build the vital organizational skills that all kids need, but to give autistic kids in particular a little more help. The cover is purposely in muted colors but is an image of architecture, not babyish cartoons. I hope it’s a planner that kids don’t mind having on their desks at school and that they can actually use.

I’m Not an Autism Mom

Many, many times over the years, people whom I can only assume thought they were being helpful or being advocates have dogged me for my use of the word “autistic.” No, I don’t mean as slang or as an insult, but literally as the word to describe my daughter’s condition. As in, “She’s autistic.” Apparently, the PC Police have the right to determine an individual’s self-identifying label, and I get called out for it.

“You shouldn’t say she’s ‘autistic,’ you should say she’s a person ‘with autism.’ You’re labeling her and making the autism be who she is, instead of just a small part of who she is.”

Great. Good for you. If that helps you sleep at night and helps you believe your child has a future that doesn’t involve a sheltered workshop and a group home, awesome. In my daughter’s case, I’ve got far bigger fish to fry, like teaching her to go to the bathroom on her own and use a fork in a restaurant.

But what I find so interesting is all the parents–even ones who’ve told me not to use the word “autistic”–who will openly make their email addresses, their social media nicknames, their blogs, and more all about being an Autism Mom. I’ve met people whose email accounts, the ones they use for work, for their school correspondence (even for their other children), for signing up for day camp or Little League, and more are all about autism.

That tells me that not only is autism who your child is in YOUR mind, it’s who your entire family is. Your entire life is autism. You gave it a power over your day-to-day life that it shouldn’t have. You made autism so much a part of your very being that people who want to send you a message have to get through autism first in order to reach you.

I’ve had a long-standing belief that how an individual and his family responds to ANY kind of diagnosis or obstacle is NO ONE ELSE’S BUSINESS, so if you want to paint your car with the rainbow puzzle piece (which, by the way, many advocates in the autism community are abandoning because “I’m not a puzzle that needs to be put back together”), that’s your business, I guess. It would be nice if you asked your child’s permission first, though. If I can’t call my daughter “autistic” because it’s somehow hurtful–and no one has established a link between the factual autism diagnosis and being less of a person–then think really hard about signing your child up for school with AutismMommyRocksIt714@autism.autism.com as your communication email.

I’m telling my daughter that she’s autistic, no more, no less. You’re telling the entire internet that your child is autistic. Think it over.

More important, though, than any finger pointing or world wide web announcements is the fact that we learned Carrie’s diagnosis while she was still so young. At that time I had to make a conscious decision that her medical and developmental needs would not take over our lives. Of course they’re important, just as my other child’s needs are important. But I consciously refused to give autism any more power than it already had over our lives. It dictated so many things, especially in the beginning… where we ate, what movies we could go see, even where we lived since we left our home to move our family to a “better” school district, never mind the fact that our older child was already well into school and had friends she had to leave behind, all for her sister’s needs. That sucked, in a big, big way.

Becoming AutismMommy wasn’t happening. I spent so many waking hours (and a lot of hours when we all should have been asleep) handling some part of Carrie’s diagnosis that I wasn’t going to let autism have any more of my life than it already had to. Does that sound selfish to some people? Sure, why not. But it’s made us a stronger family and made Carrie a happy, well-rounded, AUTISTIC person.