Thursday, October 31, 2019

In Which My Kids Are Not Super Special Snowflakes

Today is Halloween. Until yesterday afternoon I was planning to take Kittygirl out trick or treating this evening. Then our city made the decision around 3pm yesterday to move trick or treating to Saturday November 2nd from 3-5pm. Why? Because it MIGHT rain tonight and the mayor wants "to err on the side of caution for the safety of the children".

This is a travesty for two reasons. First, while I do acknowledge there are rare times when trick or treating should be moved due to true severe weather, possible rain is not a good reason to move trick or treating. Secondly, who trick or treats from 3-5pm?!?1? To be fair, I should acknowledge that the area of Wisconsin in which Mr. Engineer grew up has done trick or treating from 3-5pm the Sunday closest to Halloween at least since his childhood in the 1980's. However, our city has ALWAYS done trick or treating from 6-8pm. Even on the few occasions when the date has been moved, the time has never changed.

Aside from my love of Halloween and my personal indignation at this change, I feel like it speaks to a  larger problem in our society of treating children as super special snowflakes who must be protected not only from every possible harm but from every possible inconvenience. As the mother of two children who have actual, certified special needs I feel the need to speak out against this trend.

My kids have special needs. One needed years of extra help to learn to read and write and will always struggle in that area. In order to concentrate in school, the same child needs to take medication daily. He has a harder time regulating his emotions and controlling his impulses than people without ADHD. My other child has a body that does not produce a hormone necessary for life. She will need to receive insulin through either injections or an infusion pump throughout the day and regularly check her blood sugar for the rest of her life (barring a cure). However, they still live in the real world and they're going to need to learn survive in it without it constantly being rearranged for them. They are not and should not be treated as super special snowflakes

When Squirrelboy grows up, if he works for a traditional company, he will need to get used to the fact that any written work he needs to do for his job will be due when it is due and his boss is not legally required to accommodate his dyslexia or his ADHD with a 504 plan. When Kittygirl grows up, she will need to manage her diabetes completely on her own, even in stressful situations. She can't put off picking up insulin if it runs out just because she doesn't feel like going out in the rain.

The prevailing mindset among today's parents seems to be that everything needs to be arranged to suit their kids. This doesn't just involve trick or treating.  Your kid got a bad grade? Time to call a conference at which you pressure the teacher to change the grade or provide extra credit to raise your child's grade. Clearly the bad grade is the teacher's fault. Your kid broke the rules at the trampoline park and got hurt? Time to sue. Clearly it's the corporation's fault that your kid took a swan dive into the foam pit, hit the wall, and chipped his tooth.

When these kids grow up (and some are already there or getting close) they'll go out into the world thinking that everyone is going to bend over backwards to serve their needs. They'll get  a nasty surprise. Their employers (and even their college professors) are not going to treat them the way their parents did. The parents of these children are doing them a serious disservice.

We need our children to know that we love them, and we need to provide them with the things they genuinely need. Sometimes these things include a modified educational environment or other changes to meet their needs.  However, an effort to protect our children from every single negative experience is not good for them. Let's start by letting them trick or treat in the rain


Wednesday, October 30, 2019

In Which Little Things Make a Big Difference

When you have more than one kid, it's always difficult to balance their needs and juggle their schedules. This fall, Squirrelboy has gotten the short shrift schedule-wise, as I mentioned in an earlier post. Because of Kittygirl having an after school activity four days a week and Squirrelboy having one her one free day, it has been rare for me to have a free afternoon to bring Squirrelboy to the other side of town to go mountain biking.

This week there are no regular ballet classes because there's a show, which Kittygirl elected not to be in. I quite suddenly remembered that yesterday when the kids were at school. I didn't have to pick up Kittygirl until Girls on the Run ended at 4pm, so I calculated that I had enough time to run Squirrelboy to the trails and get back in time to get Kittygirl at 4pm if I brought his bike with me at pickup.

He threw a wrench into the works when he called and asked me if he could stay 20 minutes late to help make a video for the school news show. However, I got the reaction I was aiming for when he came out and saw his bike. His face lit up, and he eagerly agreed to go out to the trail. I needlessly stressed myself out thinking that I might be late picking up Kittygirl, but it all worked out. Despite getting a flat near the end of his ride, that chance to do his favorite activity made his week.


Taking Squirrelboy to the mountain bike trails was a little thing, but it made a big difference for him. It served as a reminder to me that little things can make a big difference in a lot of realms, especially when you and/or your kids have some kind of special need or challenge in your lives.

The other day Squirrelboy asked me, "How do some people make it to high school and still be so immature?" For a few years he lagged behind many of his peers in maturity, so it was simultaneously surprising and heartwarming to hear his question. I realized that he has reached this point as the result of a million little things Mr. Engineer and I have done as parents.

One thing we've done is to insist that he always put forth his best effort. Sometimes, because of his dyslexia and ADHD, it takes 3 times longer (or more) for him to be his best work than it would take one of his typical peers to do their best work. It would be so easy for him to throw in the towel and just not do the work at all or rush through it and put very little effort into it. We never put an emphasis on grades or praised A's over B's. We made it clear that his best effort was what mattered, whether that best effort earned an A, a B, or an even lower grade.

We also worked for many years, and are still working, on teaching him to think before he acts and to think about what effect his words and actions could have on other people. He's usually pretty good at this in public at this point. With his sister, not so much.

Finally, we taught him to respect authority. Even when he didn't like his teachers, even when we didn't like his teachers, we taught him to respect their authority and listen to them unless they were clearly doing something wrong. We taught him to respect our authority as his parents and worked to earn his respect.

All of this has added up to a kid who looks at a segment of his peers and asks, "How did they get this far in life and still be so immature?" I'm not saying that the parents of every single immature kid has done everything wrong. I can't see into these kids' brains. Maybe there's something going on that makes it more challenging for them to control their impulses. Maybe their parents worked just as hard as we did but the kids are currently in a deep rebellion.

What I do know is that Squirrelboy would not be the happy, well adjusted, polite high school freshman he is if we had not done a million little things to guide him in that direction over the past 14+ years.

Tuesday, October 29, 2019

In Which I Have a Complicated Relationship with Graphic Novels

When you're a lover of books and your child has dyslexia, one of your greatest desires is for that child to learn to love books even though reading doesn't come naturally to his brain. Thankfully, I read enough to Squirrelboy when he was young that he already had a good relationship with books when we figured out in kindergarten that it would be a long, difficult road for him to learn to read them.

I gave him a pass on reading for pleasure or for the school reading log for a long time (I read to him instead), but eventually his skills were high enough that I really wanted him to start reading more on his own. He resisted the whole enterprise and vetoed almost every book I checked out of the library for him, until The Adventure of TinTin entered his life. I checked out a collection of these classic graphic novel adventures before a trip once, and Squirrelboy was enthralled.  He actually spent a large portion of the nearly 500 mile trip to Grandma and Grandpa's house reading and commented on how short it felt.

He ended up reading every single TinTin adventure written. I was hoping that at that point the fire of his love for reading would have ignited and he would move on to more traditional middle grade novels. He did have a long standing love for the I Survived series of books, but I couldn't interest him in anything else, and, even in the case of the I Survived series, he only wanted to read the book if the historical event referenced was of interest to him.

The next series of books that pulled him in was the Nathan Hale's Hazardous Tales series, which I mentioned in my Halloween costume post last week. In contrast to his other favorite historical series, he did want to read all of these, whether or not he was familiar with and previously interested in the event that was the focus of the book. These books helped him fall in love with American history, and I was hoping he'd want to read other books about history because of that. In fact, my mom gave him an old series of children's books from her childhood covering many aspects of American history in narrative form. I've read a few of them. They're pretty good. Squirrelboy, however, has never even cracked the cover of a single volume.

Squirrelboy's other great love when it comes to series books has been the Diary of a Wimpy Kid books. These aren't exactly graphic novels, but they're pretty darn close. Even now that Squirrelboy reads well, he still avoids reading traditional texts with the exception of an article about something that's of interest to him. However, he reads the Wimpy Kid books and his favorite graphic novels over and over again.

Kittygirl has also gotten on board the graphic novel bandwagon. She has always been an advanced reader. In first grade she was devouring books in the Whatever After series - middle grade novels written on a 4th grade level. However, about midway through second grade she decided she only liked books in the Owl Diaries series. This series is part of the Scholastic Branches line. They're basically a combination of early chapter books and graphic novels. She has since branched out to more traditional graphic novels, and is particularly fond of the autobiographical graphic novels of Raina Tegelmeier. She devoured Guts, the purple book in the picture, over the course of an hour yesterday.

I suppose I should be happy that my kids are reading at all. So many kids spend most or all of their weekend and after school hours playing on screens and never read a book unless they're forced to. The fact that there exists a selection of books my kids enjoy reading and an even larger selection the enjoy listening to should please me. However, the traditionalist in me will always be a little sad that they're not reading "real books." At Kittygirl's age I was devouring The Black Stallion series, and, at Squirrelboy's age, I had moved over to the grown up fantasy section as well as the horseracing based mysteries of Dick Francis.

There's one small way I can relate to them, however. When I was spending my senior year of high school in Sweden, I was initially not fluent enough in Swedish to read traditional books, and I didn't want to do all of my reading in English. So once a week after school I would go into town and buy a Kalle Anka comic. Kalle Anka is Donald Duck's Swedish name. I could usually figure out the words I knew from the pictures, or follow the story using the pictures even if I couldn't. It felt good to have something Swedish to read regularly, and I still treasure the Kalle Anka issues I have from that year. That's the closest I've come to understanding the feeling Squirrelboy must have had when he finally discovered TinTin and found a series that he liked and could read without being overwhelmed. The fact is, despite what we book snobs like to think, graphic novels ARE real books, and there's no reason people with or without dyslexia shouldn't be enjoying them.

Monday, October 28, 2019

In Which I Spend a Day Alone With Squirrelboy and Also Learn Something New About ADHD

I love my husband. I love my kids. But sometimes I almost wish I were in a divorce situation so that there was someone else to whom I could send one kid at a time. Alone, each of my kids is absolutely amazing. Yes, sometimes Squirrelboy's ADHD intrudes briefly, and Kittygirl's T1D is always in the background. However, it's nearly always a pleasure to spend time with them individually. When they're together, it is often not a pleasure to spend time with them. They nag at each other in a way no one else can nag at either of them, and every single little thing one does can grate on the nerves of the other.

This is one of the many reasons I appreciate the Boy Scouts of America. Beginning in August and stretching through mid-November, Squirrelboy's troop has two weekend campouts a month on average, occasionally three. Mr. Engineer often comes along. On those occasions I get a weekend alone with Kittygirl, which is usually a delight. It's more rare for me to get a weekend alone with Squirrelboy, but it has started to happen thanks to girls being allowed into the Cub Scout program. Mr. Engineer and Kittygirl have gone on two Cub Scout campouts together this fall, which means I have had two solo weekends with Squirrelboy. This past weekend was one of them.

I was a bit nervous at the beginning of the weekend, because Squirrelboy had to spend time on Saturday reviewing the requirements for a merit badge in preparation for a meeting on Sunday and he also had two projects to work on for school. Such things have historically stressed him out and made spending time with him not very much fun. I was pleasantly surprised on Saturday by how things went.

I slept in until almost 10am, which is a rare treat for me. I discovered upon getting ready for the day that Squirrelboy was finishing breakfast, had remembered to take his ADHD medicine (which is notable since he doesn't usually take it on weekends), and was ready to get to work. I expected that I would be talking him through what to do step by step, but that's not what happened.

Yes, there were a handful of small freakout moments when he thought he had lost one of his papers for the merit badge work, but they were all quickly solved and he handled 95% of the review work himself. I was even more impressed when it was time for him to work on his school project, an imaginary conversation for English class in which Susan B. Anthony and Martin Luther King Jr. run into each other at a Starbucks and discuss contemporary voting trend.

The assignment involved looking up the words of both historical figures, paraphrasing them at appropriate points in the conversation, and citing them in APA format. I had no idea how much Squirrelboy had learned that would help him with this task. I thought I might have to drag him through it and look up every citation for him, but I was wrong. He needed just a little bit of guidance and encouragement.

Even though Squirrelboy grew a lot as a student while I was homeschooling him, I sometimes despaired that he would ever be able to do his schoolwork fully independently. He's still not 100% there in 100% of his subjects, but neither are most high school freshmen. He has really stepped up and matured a lot since starting high school. It makes me simultaneously proud and a little nostalgic for the kid who needed me so much.

He even finished in time for us to go to a 5pm showing of The Current War, which I highly recommend.

Incidentally, the same day I hung out with Squirrelboy and mostly just watched him work I ran across an article about ADHD while scrolling through Facebook. It detailed research that shows that the ADHD brain is constantly seeking stimulation. If it can't find stimulation anyway, it may create its own stimulation by provoking an argument. The person with ADHD isn't consciously trying to stir up trouble, it just sort of happens.

This explains so much, both in my life and in Squirrelboy's. Yes, sibling rivalry is a real thing even if neither sibling has ADHD, but, since Squirrelboy is the instigator about 70% of the time, I'm hypothesizing that a decent percentage of his arguments with his sister are just his brain seeking stimulation. It happens to me too. Just the other night I found myself getting really angry at Mr. Engineer and didn't even know exactly why. It just made me feel better to be angry at him.

This is something good to keep in mind if you or someone in your life has ADHD. It doesn't mean that the person with ADHD should be left totally off the hook when they provoke an argument. It's still an important skill to learn to redirect that impulse and seek stimulation elsewhere. Upon reflection, this tendency might be why Squirrelboy went through a brief phase of biting and hitting other kids in his early preschool years. We successfully redirected the impulse.

What knowledge of this does mean, though, is that family members and friends of those with ADHD should be extra thoughtful when responding to unprovoked conflict. It may not be that your child, spouse, sibling, or friend is trying to be a jerk. It may just be that their brain is jerking them around.

Friday, October 25, 2019

In Which I Break Topic (Mostly) to Share My Love of Halloween

I love Halloween. I really, really love it. I'm not your run of the  mill Halloween lover who goes to all the haunted houses in the area and hosts and amazing haunted house on Halloween. I don't love blood, guts, monsters or vampires (well, I did read and enjoy the Twilight books). These pictures of my Halloween decorations should give you an idea of the version of Halloween that I love.

Ghosts and skeletons only make it into my Halloween bubble if they're cute. Black cats and bats are already cute, so they're good as far as I'm concerned. Evil witches, not so much. Cute kid witches, come on in. And witches from the Wizarding World of Harry Potter, the more the merrier.

What I love most about Halloween is the permission to dress up. This is especially true for kids, but even adults can get away with it, especially if they're parents coordinating with their kids. When I was growing up in the 1980's, Halloween was one day. You chose a costume. In my case my mom then slaved over a sewing machine for quite a few evenings making said costume. You wore it a school  on October 31st for the Halloween parade. You went out into  your neighborhood that evening and trick or treated. Then it was over.

Over the years, Halloween has crept its way backwards so that at this point it has basically taken over the whole month of October. I think this is awesome, because that means there are a lot more opportunities to dress up. Squirrelboy has never loved picking a costume and dressing up on the level that I do. Every Halloween he chose a costume, often a pretty creative one, wore it on Halloween and possible to one other event, and called it good. This year, his first year in high school, he has decided that he's done with trick or treating and will stay at our house to hand out treats. I suppose it's an inevitable part of growing up, but I trick or treated through my junior year of high school, so it makes me a little sad.

Kittygirl, at 8, is nowhere near being done trick or treating, and she's a girl after my own heart when it comes to her love for costumes. She attends at least one Halloween even every weekend during October, and she wants to wear a different costume for every one. So far this month she has been Ginny Weasley (this is what she'll use on Halloween), a black cat, Anne of Green Gables, and Squirrel Girl. This is costume week at gymnastics, and this afternoon she'll go as an elf in the following ensemble:
This is just Christmas clothes with the addition of a Santa hat. Her favorite Christmas themed costume of mine was when, at five, she pulled together a Christmas fairy outfit. She used a Christmas dress and wings with Christmas decorations taped to them. It was awesome.

Mr. Engineer is even less into dressing up than Squirrelboy, but we've managed to talk him into participating in a handful of family costumes. The two main ones were the two years we attended Mickey's Not So Scary Halloween Party at Disney World. The first time was ten years ago when Squirrelboy was 4 and Kittygirl was just a dream. Squirrelboy was obsessed with a Playhouse Disney (now known as Disney Junior) show called My Friends Tigger and Pooh. In the show, Pooh and Tigger run a detective agency with a little girl named Darby. They call themselves the Super Sleuths. In my version of the backstory, Darby is Christopher Robin's daughter, but that's actually mentioned in the show. We found a Tigger costume at a consignment sale and added a t-shirt from Goodwill with the Super Sleuth symbol on it. Yet again, with the help of Goodwill, I found a yellow outfit I could turn into a Pooh costume for Mr. Engineer, again with a secondhand Tshirt with the Super Sleuth symbol. Darby was the easiest. I just had to find some clothes that resembled her typical outfit. Everyone knew who we were and it was a ton of fun.

On our second visit to Mickey's party, Kittygirl was four and Squirrelboy was six. That year we veered from the Disney theme and had two pairs of historical literary characters. Kittygirl and I went as Mary and Caroline Ingalls, thanks to my  mom's great seamstress skills. Mr. Engineer and Squirrelboy's costumes need a bit more of an explanation. There's an amazing series of graphic novels about American history by an author named Nathan Hale entitled Nathan Hale's hazardous tales. In the first book, the spy Nathan Hale is on the gallows and speaks his famous last words, "I regret that I have but one life to give for my country." In doing so, he inserts himself into the history book, quite literally. The gallows turns into a big history book, swallows him up, and spits him back out having imparted the knowledge all future American history to him. The rest of the series is Nathan  Hale telling the hangman stories from American history to delay his execution. They're amazing, especially for reluctant readers including dyslexics who can read but get overwhelmed by a lot of text on the page (see there, I DID tie this into the theme for the month :)). Squirrelboy, of course, dressed as Nathan Hale and Mr. Engineer went as the hangman.

The one thing I do not love about Halloween is spending large amounts of money on costumes. Given that Kittygirl wears anywhere from 4-8 costumes every October you might presume that that's exactly what I do, but you would be wrong. I limit the costume buying to one costume per year, and everything else needs to be pulled together with things we already own. This year for Kitty girl I bought a red wig (actually intended as an Anna wig from Frozen II) and that was all. To be Ginny Weasley Kittygirl is adding the wand we bought at Universal Orlando this summer and a Gryffindor robe Squirrelboy wore to be Harry Potter at her age (that year, incidentally, was the best sibling match year ever - two year old Kittygirl was a Hogwarts owl). The cat ears and tale are from her costume bin, bought cheaply one year after Halloween. She used the red wig and wore an old fashioned looking dress to be Anne. Squirrel Girl was accomplished with a brown dress, brown boots, a furry brown best, and squirrel ears and tale that were Squirrelboy's main costume a couple years ago.

I've always loved Halloween and dressing up. However, it has taken on even more meaning during my years of parenting, and especially during my struggles parenting kids with invisible disabilities. Halloween, and the whole Halloween season, is one more opportunity to seize joy and to help my children have beautiful memories of their childhoods even amid the struggles they've also had.

These two memes sum up my attitude really well. I don't always do it as well as I usually do in October, but I want to not let our challenges make me or my children bitter. A big part of doing this is to choose joy.

Thursday, October 24, 2019

In Which I Ponder My Children's Futures

In addition to being dyslexia awareness month, ADHD awareness month, Down Syndrome Awareness month, and probably a bunch of other things I'm unaware of (somewhat ironically) awareness month, I recently learned that October is disability employment awareness month.

Most of us have seen the feel good stories about businesses that exist to employ people with autism, Down Syndrome, or other disabilities. There are also people with those disabilities working in "normal" jobs, though it's not highlighted on the news so often. Unfortunately, when you have a visible disability like Down Syndrome that everyone knows includes some level of intellectual impairment, it can be hard to get people to take you seriously as an adult and employ you, even if you're perfectly capable of doing the job competently.

When you have an invisible disability, the struggle is different. You need to decide whether you should even reveal your disability to your potential employer and what effect it might have if you do. Barring a cure or an amazing new treatment that allows her to ignore her diabetes, this question will be most applicable to Kittygirl when she enters the workforce. Diabetics struggle every day with this question. If they reveal their condition to a potential employer during the interview it might be a strike against them. Even though they can't legally be discriminated against due to diabetes, it does happen. However, if they don't reveal it in the interview process, they need to decide when or if to make the big reveal after starting on the job. If they reveal their diabetes they might face prejudice, but, if they don't, they might be in a dangerous or even deadly health situation if their blood sugar drops very low and their coworkers think their odd behavior indicates drunkenness or illegal drug use.

Those with an invisible disability like dyslexia or ADHD won't be at risk of dying if no one knows about their condition. The question they face is more along the lines of whether they want to risk facing prejudice if they reveal a condition that is part of what makes them who they are. This is particularly true for adults who take medication to treat ADHD. Most people are okay with kids being on medication for ADHD, but the presumption is that the kids will eventually outgrow the need. Since the stimulants used for ADHD are sold and used illegally, adults who take such medications for legitimate reasons can come under scrutiny.

Both of my kids, as I've mentioned before, will need to have good health insurance if they need to continue on the medications they're currently taking into adulthood. For Kittygirl, of course, insulin will remain a necessity unless there is a cure or an alternate medication that treats type 1 (in which case that medication would become a necessity). Squirrelboy, on the other hand, MIGHT outgrow his need for the help that his medication gives him as he matures and learns more strategies to deal with his chaotic brain. He also might not.

Unless the U.S. wises up and approves a program that provides free or cheap healthcare for all paid for by our taxes, my kids and many others will need to consider what kind of benefits are offered or how they will pay for them independently as they consider future careers.

Squirrelboy's current dream is to be a filmmaker or YouTuber. Since those aren't exactly careers that offer guaranteed steady work, it will be interesting to see how he tackles that issue as he moves into adulthood. Insurance wouldn't be the only issue. Running your own business also requires organizational skills that Squirrelboy doesn't have and that would be very difficult for him. In his defense, not many 14 year olds would be ready to run their own business and he has time to learn. As long as he's committed to learning the extra skills that he'll need to master because of the way his brain works, I think he has a bright future ahead of him.

Wednesday, October 23, 2019

In Which My Kids "Look Normal"

The thing about invisible disabilities is, they're invisible. Shocking, I know. Overall, it's not a bad thing. People with visible disabilities often encounter a lot of prejudice just because of the way they look or act. I have a friend who has visible mobility issues as well as speech struggles that are quickly apparent, and she is often treated as if she is intellectually impaired even though, in actuality, she has a PhD and works as a college professor.

When people interact with Squirrelboy what they see is a confident, kind, and curious teenager who does well in school and interacts easily with both peers and adults. If they look a little closer they might realize that he makes a greater than average number of spelling mistakes, but, after all, he IS still a teenager and they're not exactly known for their excellent spelling.

What people don't see is that it can take him an hour or more to write a seven sentence paragraph for school. They don't see him asking me to read over every email before he sends it to make sure he hasn't made any grammar or spelling mistakes. They don't see him coming out of his room at 10pm freaking out over the fact that he forgot he had a math test to study for until he was trying to go to sleep and the million other things in his brain had begun to calm down.

People with invisible disabilities have the privilege of "passing" as typical. This is advantageous most of the time, but it does require mental (and sometimes physical) effort that can be incredibly draining to the person with an invisible disability. A friend of mine who has a child on the autism spectrum who "looks normal" shared this meme on Facebook today, and I thought the message was applicable to more than just autism.


Thankfully, Squirrelboy's struggles (and my own) are significantly fewer than the struggles faced by many, including those with "high functioning" autism. That doesn't mean they don't exist, however. What identifying my own struggles and helping my kids live with theirs has taught me is not to assume that "looking normal" is easy for everyone,

Tuesday, October 22, 2019

In Which It Can Feel Like Dyslexia Is Contagious

One little known characteristic of dyslexia is difficulty with word recall. Even though a dyslexic may know all the right words, it can be difficult for them to retrieve them at the right time.

One of the seminal works on what it means for your child to have dyslexia is Sally Shaywtiz's Overcoming Dyslexia. I read it soon after Squirrelboy's official diagnosis, and I saw him in so many of its pages. One cartoon in particular struck me. It pictures a little girl reading a book and picturing a volcano in her head, yet producing with word "tornado."

This is a really common thing for Squirrelboy. He'll say a word with a similar number of syllables, maybe even from the same category (tornadoes and volcanoes are both natural disasters, right?) but it won't actually be the word he's looking for. 

Both Squirrelboy and Mr. Engineer have mastered the art of circumlocution. If you don't know the word, you just talk around the word until your listener figures out what you mean. I'm familiar with this skill as well. When I'm speaking in Spanish or Swedish (both of which I speak proficiently but not at the level of a native), I sometimes forget a word and have to use words I DO know to describe what I'm trying to say.

This is usually something deemed acceptable by native speakers when done by a non-native speaker, and it's completely acceptable within our family circle though we're all speaking our native language, but it can be embarrassing when you're out in the world and can't recall the right word. I found a post on Facebook the other day that captured this perfectly.

This particular characteristic of dyslexia has made Mr. Engineer aware of the fact that there are a lot of dyslexics in the engineering world. It seems as many as half his coworkers are dyslexic. He'll tell stories about them all sitting in a meeting trying to figure out the right word for something. Eventually they sometimes just choose an alternate word and move on because they all know what they're talking about.

Weirdly, though I am not the least bit dyslexic, I seem to have picked up this characteristic over the years of being married to one dyslexic and raising another. In reality, I'm sure it's just a combination of my brain getting older (I'm 44 in case you want to know) and my brain being so taken up with the details of life that sometimes the words I want can't dig themselves out from the avalanche of other things in there.

At this point, Squirrelboy, with his interests in mountain biking and video production, has actually learned a lot of words I've never known. He doesn't often struggle to remember those words, though it does happen on occasion. Since Mr. Engineer has managed to have a successful engineering career despite his occasional need to resort to calling something a "thingamajig" because he can't find the word, I'm not worried about Squirrelboy in this respect. He'll make his way in the world just find, even if he calls the occasional volcano a tornado.

Monday, October 21, 2019

In Which My Son Could Have Been Born Into a Different Family

A week ago I posted about how Squirrelboy lost the genetic lottery when it comes to the invisible disabilities he could have inherited. He not only got my ADHD and Mr. Engineer's dyslexia, he got a more severe version of both. However, he's blessed to have won the situational lottery, by having been born to well educated upper middle class white parents who knew how to advocate for him and had the resources to get him the intervention he needed.

I have often wondered what would have happened to Squirrelboy if he had been born into another family. Of course, he couldn't literally have been born into another family, but children with disabilities like his are born into other families every day. Unfortunately, not all of those families have the knowledge, the resources, or the will to get their children the services they need to be successful in life.

While I was homeschooling Squirrelboy I met many families who had pulled their children out of school because the school wasn't serving their learning disabilities well, or, worse yet, was ignoring those disabilities altogether. Many of these parents had made great sacrifices of their time and income in order to give their children an education that would allow them to thrive.

Unfortunately, the majority of children with learning and attention disabilities don't have parents who are able to provide them with an individualized education at home. Most children with learning and attention disabilities are educated in the public system, and a huge percentage of them do no receive the accommodations and services they need.

I'm not blaming the teachers who let these kids fall through the cracks. As I've discussed before, even most reading specialists are not well educated in dyslexia. There are always exceptions, but the large majority of teachers want to see all their students succeed and will everything they have in their toolboxes to make that happen. Unfortunately, their toolboxes may only include a hammer and a Phillips head screwdriver when the tool little Johnny needs is an 1/8 inch Allen wrench.

One of the greatest disservices done to students with disabilities that are not diagnosed before they enter kindergarten is the concept of "waiting to fail." The idea behind this seems good on the surface. Children develop at different rates, and the idea is to wait until the end of second grade to let children catch up before evaluating them for learning disabilities. I'm sure there are a few children for whom this policy works. If a child is bright and has no learning disabilities, but comes into kindergarten with minimal exposure to books and letters, that child will eventually catch up with a good standard education.

However, students with dyslexia will never learn to read well without targeted intervention, and the earlier that intervention begins, the greater the chance of success. Despite evidence of this fact, parents are often told that it's not possible to diagnose dyslexia until 3rd grade.  This is patently untrue, and even the National Institute of Health knows it, but all too many schools don't.
Children only get evaluated earlier if their parents know enough to suspect dyslexia early on and aren't afraid to speak truth to power when it comes to advocating for their children.



Since I'm proficient in Spanish, I was sometimes called upon by Squirrelboy's elementary teachers to work with students from Spanish speaking families who came into the school with little or no knowledge of English. Squirrelboy's school had a strong ESL program and those students got a lot of support and most of them were working at or above grade level in English within a couple of years. All the students I worked with who came into the school in the upper grades could read and write proficiently in Spanish and just needed to transfer those skills.

I wondered what would happen, though, to a student with dyslexia who entered school with limited English proficiency. Chances are that student's struggles would be attributed to lack of English proficiency and a learning disability would not even enter the discussion until late in elementary school, possibly even later than third grade, when evaluations are most often considered. If the student's parents are immigrants with limited English proficiency and no understanding of the public school system and their rights to advocate for their child, that child would experience significant failure before any attempt at intervention began. All too often these are the kids who develop serious behavior problems and drop out of school as soon as they can.

This is much less common, but kids with invisible disabilities can also be held back by their parents. Homeschooling parents can fool themselves into thinking that their children will read "when they're ready", and continue to pursue a standard education with accommodations because they have an idea that having a label will hurt their child in the future. I have a friend who taught for a time at at Christian high school that admitted quite a few students who had been homeschooled through 8th grade. She told me about a few students she had who showed every sign of dyslexia, but who had never received any intervention because their parents did not want them to be labeled. These students struggled greatly at this rigorous high school, but their parents continued to believe that a label would be more damaging to them than failure.

My dream is for dyslexia, ADHD, and other invisible disabilities to be destigmatized so that parents are not afraid to seek out labels for their kids if they show signs of these disabilities. The second part of the dream is for public school teachers and administrators to be thoroughly educated in these disabilities and others and to begin identification and intervention as early as possible, allowing all of their students to succeed instead of waiting for some to fail.

Squirrelboy is successful today because he was given the supports and interventions he needed. It breaks my heart that not only is this not true for every child, it is not true for a large percentage of children with the same challenges he has.


Friday, October 18, 2019

In Which My Brain Resembles the Top of My Husband's Dresser, But It's Not Really a Bad Thing

I was talking with Mr. Engineer today, and he made reference to me possibly being able to find something I was looking for on top of his dresser. I told him I'd looked, but, quite understandably, couldn't find it.Then I joked that it has about the same level or organization as my brain. This is what the dresser top looks like:


If he ever needs a receipt from the past decade, a small electronic item that has broken down, a birthday card that's been given to him since we got married, or a Dexcom transmitter that has expired, this is where he would find it. Anyone who's willing to sort through the mess could find one of those things as well. Some of them are easier to find than other. If you know what a Dexcom transmitter looks like, for instance, you can probably spot one over on the right.

I wasn't completely joking when I said that this is what my brain looks like. Contrary to popular belief, it's not usually true that people with ADHD can't pay attention to anything. The problem more often is that we're paying attention to too many things at the same time. Just like the top of this dresser, my brain and Squirrelboy's brain and constantly noticing and reflecting on so many things it can be chaotic. The problem is when we're forced to focus on a particular one.

Sometimes this ability to keep lots of things in our brains at once can be advantageous. People with ADHD who have acquired tools (through medication, through practice, or both) that allow them to sort out the mess a little bit and choose what the focus on are often exceptionally good at multitasking.

I spent my senior year of high school in Sweden. One of my host family's traditions was to watch TV together in the evening while eating evening fika. It's sort of a cross between a snack and the British concept of teatime, but with its own cultural heritage. I normally had homework to do in the evening, but that didn't stop me from enjoying fika in front of the TV. 

A lot of my host father's favorite shows were American shows with Swedish subtitles. I was placed in the humanities track in Swedish high school, which meant that, in addition to learning Swedish, I was studying Latin, French, and Spanish. My homework was often in one of these languages. My host mother frequently expressed amazement that I could listen to a TV show in English and hold a conversation in Swedish while doing homework in a third language. It didn't amaze me. It was just the way my brain worked.

When I shared this story with Squirrelboy last year, he asked, "Is that why I notice things that other people miss? Because I notice everything." That is absolutely true. His problem is that sometimes he is so busy noticing all the details going on around him he completely forgets to pay much attention to the one task he's supposed to be focusing on. Thanks to a combination of his medication making his brain a little quieter and a growing maturity that has allowed him to take criticism and start applying the advice we've been given for years, Squirrelboy is slowly learning to push aside the million things he notices in order to focus on the one thing he's supposed to do in the moment.

My favorite example of an ADHDer's natural ability to notice so many things going on around them comes from fiction. In the Percy Jackson and the Olympians series by Rick Riordan features modern American children of Greek demigods. Nearly all demigods, according to the book, have dyslexia and ADHD. The dyslexia happens because their brains are hardwired to read ancient Greek. The ADHD gives them a serious advantage in battle, as it allows them to notice everything happening around them and make the best decisions. Spoiler alert: the teenage demigods save the world. They're heroes. However, when they're expected in school to learn to read English well and to sit still and pay attention in class, they look like failures.

I wish every child with ADHD had the opportunity that Squirrelboy and I have had to see their different brains as advantageous in some situations and to acquire skills that allow them to function well even when their brains are disadvantageous. Unfortunately, all too often only the things they do poorly are pointed out to them, and they are neither given the skills they need in situations in which their brains work against them nor shown that their brains are amazing creations that are incredibly useful in other situations.

Thursday, October 17, 2019

In Which My Son Does Not Have An Anxiety Disorder (But Sometimes It Feels Like He Does)

People unfamiliar with ADHD often think it's all about being hyperactive and/or not being able to pay attention well. While both of those things can absolutely be part of how ADHD manifests itself, a less well known aspect of ADHD is difficulty with emotional regulation.

While he was a pretty chill baby, since toddlerhood Squirrelboy has been a little more dramatic and moody than the average kid his age, particularly the average boy. In fact, when I was expecting Kittygirl and was told I should prepare myself for the drama of having a girl, I replied that only those who didn't know my son would think I was unfamiliar with drama. It turns out, in fact, that Kittygirl overall has been much less dramatic than her brother was at the same age.

The differences between him and his peers became more obvious as he got older. As most other tweens began to express their emotions more calmly, he was still more likely to have the type of meltdown usually reserved for younger children. Thankfully, these did usually only happen at home. As I've discussed before, his behavior at school was quite good and that normally carried over to any activity outside the home.

For years I felt like his intense reactions to stress and conditions he didn't like might be signs of an anxiety disorder. When we had him evaluated for ADHD, the testing included a full psychological panel. His personal survey did not indicate any signs of anxiety. The parental survey that Mr. Engineer filled out did not indicate any signs of anxiety. The testing did not indicate any signs of anxiety. The only thing that indicated anxiety was the teacher survey I filled out about him.

With those results, I had to reevaluate my instincts. It occurred to me that Squirrelboy's "anxiety" was most likely a difficulty with emotional regulation brought about by ADHD as opposed to a separate disorder. Upon reflection, I recognized that I too have a really difficult time regulating my emotions under extreme stress. This is something that surprised Mr. Engineer after we got married because before that he wasn't with me often enough to see me at my most stressed.

Squirrelboy has learned more emotional regulation skills as he has gotten older, and he's better at it when his brain is more clear due to his medication. He's also better at it, with or without medication, when he's well rested. This has led to some difficult moments near the end of a long vacation, when he's both off his medication and really tired and we're trying to learn the best way to deal with that.

At moments when he is extremely tired and stressed out, however, his brain seems to lose all ability to think logically and he is very likely to say something in anger that would seem ridiculous if he were thinking clearly  (we can all do this, of course, it's just more likely if you have ADHD). Just the other day he was incredibly fed up with the way a group project for English was going and announced that he would "never do a group project again." Sadly, as everyone who has pulled more than their share of the weight on a project for school or work knows, that is not an option.

Looking back at my teenage years, I think I can safely attribute all or most of the ridiculous rages I sometimes threw at home to a combination of teen hormones and ADHD. As I got older, I learned more skills to help me cope and not go crazy at the first sign of stress, but I still have a ways to go, as my family will gladly tell you.

Since, in Squirrelboy's case, we know that part of the reason he acts the way he does when he's tired and stressed is due to the way his brain is wired. Hopefully, armed with that knowledge, we will be able to help him learn to regulate his emotions earlier in adulthood than I did and set him up for success.

Wednesday, October 16, 2019

In Which Diabetes and ADHD Wage War Within My Brain

There's Mom Brain. There's ADHD Brain. There's Diabetes Brain. Then there's my experience: Mom with ADHD Managing Her Kid's Diabetes Brain. Trust me, this one is very bad. As much as I try not to let our challenges control our lives, sometimes the whirlwind of them interacting with each other does, in fact, overwhelm me.

As I've mentioned before, I don't have an official clinical diagnosis of ADHD. It's unlikely I'll ever pursue one, because I don't see a practical reason for me to have the documentation, but the more I've learned about ADHD the more I'm certain that it explains quite a few things in my life.

Over the years I developed quite a few strategies to help with the fact that I had a hard time remembering details and was always losing stuff. When I was in high school and old enough to drive myself, I forgot to bring my lunch with me a few times. I solved that problem by taping a note to my steering wheel that read, "Remember your lunch." I repeated the practice again in grad school when I again found myself frequently forgetting my lunch and my roommate (who was working a second shift job at the time) got tired of bringing it to me :).

As long as I stuck with my routines, I usually managed to do everything I had to do. I struggled for a bit to adjust after Squirrelboy was born and as he entered each new stage and new things were added to my plate, but I was always able to establish new routines that kept me on track most of the time.

Things did get more complicated when I added a second child. I started to forget irregular events on the calendar like doctor and dentist appointments. I made a habit of writing absolutely everything down on the calendar in the kitchen and looking at it every morning, which mostly solved this problem.

When I started forgetting where I put my keys even when I had an established spot for them, I started keeping them in my vehicle when it was inside the locked garage and in my purse when it wasn't. By the time Kittygirl was in kindergarten things were going really well. I'd added the complication of homeschooling Squirrelboy, but I had a schedule established and it was going well. Then, just over halfway through kindergarten, Kittygirl was diagnosed with type 1 diabetes.

There are a lot of things to hate about T1D, but the thing that is hardest for me is the details. ALL.THE.LITTLE.DETAILS. There are carb ratios, there are correction factors, there are carb counts, there are low treatments, there are prescriptions to refill every single month. Sometimes I would bolus Kittygirl for a certain number of carbs and then forget to give her some or all of those carbs. The worst case was when I bolused her for a snack she was going to eat on the way to the park with Mr. Engineer and then completely forgot to send said snack to the park with them. Her blood sugar dropped to 25. Anything below 70 is considered low.

I'm incredibly thankful for Kittygirl's insulin pump and continuous glucose monitor, but that technology adds an additional layer of things to remember. First every seven and now every ten days we need to change the Dexcom sensor. Thankfully the Dexcom app reminds us so it's hard to forget, but it is still possible to dismiss the reminders and promptly forget about them during your busy day. The pump doesn't remind us that the site needs to be changed every three days, so I've forgotten until the morning after it should have been changed. The clue has usually been that her blood sugars were on the high side because the site was losing its effectiveness.

After managing Kittygirl's diabetes for 32 months now, we've reached a pretty good understanding of how different foods act in her body and how we need to bolus them. In the case of toast, which, at least for her, digests slowly, I need to do an extended bolus with the pump, giving 50% of the insulin shortly after she finishes the toast and 50% slowly over 2 hours. Sometimes I have to wait a little bit after she eats if her blood sugar is trending down on her CGM graph. Most mornings Kittygirl eats fruit, 2 pieces of toast, and 2 sausages. Our goal is to keep her blood sugar within the grey range on her Dexcom graph, which is between 80 and 160. If all goes well it looks like this:


On Sunday, all did not go well. We had friends staying with us for the weekend, who were making their own breakfast in the kitchen while Kittygirl was eating her breakfast. I had to help them find what they needed. I also wanted to make sure I said goodbye to them and that they didn't forget anything as they packed. I had to eat my  own breakfast and make sure Kittygirl was dressed in time to leave for church at 9:15. Then our children's pastor texted me to ask if I could step in to work at the preschool check in desk because someone was sick. That pushed our leaving time five minutes earlier. Amidst all these changes, the fact that I hadn't bolused Kittygirl's toast yet left my mind. When I was helping her get dressed, the high alarm on Dexcom went off, which means her blood sugar had reached 160. However, I didn't start a bolus right away because I was changing her her pump pouch and arguing with her over the fact that she had to wear one that held her phone as well. Then I looked at my watch and realized we should already have left for church and, yet again, the fact that I hadn't bolused for the toast went right out of my head. I finally remembered when I got to church and Kittygirl's blood sugar was already in the 200's. This was the result:

The gap, by the way, is from some time when the signal wasn't transmitting. The different timing made all the difference to keeping her blood sugar in range, or her blood sugar going way out of range.

After this experience, Mr. Engineer suggested that I set an alarm on my phone to remember to bolus the toast. That's what we've done this school year for Squirrelboy to remember to take his ADHD meds before leaving for school. When he was homeschooled, I could just have him take it when I realized within half an hour of starting work that he'd forgotten, but, if he forgets at school he just has a bad school day.

I may initiate something like this, but it still might not help in a situation like Sunday's because I would have to remember to set an alarm amidst all the chaos distracting my brain. I've forgotten on school days as well, though, so a regular weekday alarm could be helpful. I do tend to be resistant to ideas offered by someone like Mr. Engineer who doesn't often forget things, but I should probably get over that.

As the months managing my daughter's diabetes have stretched into years, I'm no longer normally overwhelmed by all the tiny details. However, they definitely add an extra layer of stress in holding things together and I still, 32 months in, haven't reached the balance I had before I introduced diabetes details to my brain and they started fighting with ADHD.



Tuesday, October 15, 2019

In Which I Pause to Remember the Children I Never Met

It turns out there are a lot more than 12 things that we need to be aware of, so every month seems to be awareness month for dozens of different things. I know from the Facebook posts of friends that October is also Breast Cancer and Down Syndrome awareness month, but I haven't been personally affected by either of those things. I've been focusing on Dyslexia and ADHD because they're both a part of our family's story, but there's a somewhat lesser known awareness cause this month that's also a part of our story.

October is Pregnancy and Infant Loss Awareness Month, and October 15 is National Pregnancy and Infant Loss Awareness Day. Kittygirl is the second child I gave birth to, but she is at least the fifth child to have begun growing inside my body. People often wonder why we have only two kids six years apart. In short, it's because for several years my body seemed to fighting against the idea of nurturing another child.

My pregnancy with Squirrelboy was pretty uneventful. I did suffer from hyperemisis gravidarum, which is a fancy way of saying that that morning sickness stage that's supposed to go away after the first trimester lasted for my entire pregnancy. I actually lost weight while I was pregnant. At one point my doctor told me to eat whatever I could keep down, even if it was only milkshakes and chocolate chip cookies. However, my own sickness never stopped Squirrelboy from getting the nutrition he needed in utero and the pregnancy was problem free, even if uncomfortable for me.

After an annoying but otherwise uneventful first pregnancy, I presumed that we could have a second child whenever we wanted to. However, we decided we wanted at least two years in between our children and after Squirrelboy's birth I went on a progesterone based birth control pill because my OB said it was the safest one to use while breastfeeding.

My use of that pill may, or may not, have been in factor in the fact that my next baby, instead of settling into my uterus where he or she  might have been successfully nourished for 40 weeks, settled into one of my fallopian tubes. I discovered I was pregnant right around Mothers Day when Squirrelboy was one. I went to my OB to confirm the pregnancy and the nurse happily announced that I was right and that my due date would be around Christmas. It was a bit sooner than we'd planned to have a second child, but I was more than willing to work with it.

When I went in to see the doctor, I mentioned that I was concerned because I had experienced some spotting. She assured me that everything was almost certainly okay but offered to do an ultrasound "just to reassure me." It turned out that ultrasound did the opposite. There was no evidence of an embryo in my uterus and an ectopic pregnancy was suspected. After a close look at the images confirmed the suspicion I was scheduled for surgery the next morning, but told to come in through the ER earlier if I started to experience abdominal pain, because that could mean a burst fallopian tube. I did indeed experience pain that evening and the surgery ended up being performed around 11pm.

At my surgical follow up visit six weeks later, my OB encouraged us to put the past in the past and begin trying to conceive again right away if we wanted to. We decided to give it a whirl, and a month later I was pregnant. This baby did settle into my uterus, but my body was bound and determined not to nurture it. At about 8 weeks I suffered a miscarriage.

To their credit, neither Mr. Engineer nor my OB pushed me to try for another pregnancy anytime soon. In fact, Mr. Engineer and I decided instead to pursue the adoption of a little girl from China. We had friends who were most of the way through the adoption process and it had been a very smooth process for them. Unfortunately for us, shortly before we finished our paperwork, China began to greatly limit the number of healthy babies it offered for foreign adoption.

In one sense this was good. There are now fewer Chinese girls who are ripped from their culture and raised in another country. No matter how wonderful the adoptive family and what a wonderful life the adopted child has, there is a still a sense of grief when a child is raised outside of the culture he or she (most often she in the case of China) is born into. However, for the many potential adoptive parents who had pinned their hopes on the smooth adoption of a little girl from China, this was heartwrenching. Children labeled with "special needs" (some of which were quite minor) were still readily available, but because (somewhat ironically it turns out) we were not interested in adopting a child that qualified as a special needs child, we eventually gave up on our dream to adopt from China.

About two years into our interminable wait on China to change its policy, we decided to try the homegrown route again. It took me quite awhile to agree. I prayed about it, asked others to pray, and came to a point at which I believed God was telling me to go ahead. I again got pregnant quickly (conception is not our problem) and again miscarried within a month of learning of the pregnancy. At this point I was just ready to be done. I proclaimed that I would  not attempt to carry another child and started searching the pictures of special needs child on the adoption agency's website to see if there was a picture that "grabbed my heart."

There actually was such a picture, a little boy who was just about a year younger than Squirrelboy, who was 4 by this time. However, when I showed the picture to Mr. Engineer he agreed that it was a picture of a cute kid, but he felt no particular draw to the kid. I researched adoption from other countries, but Mr. Engineer and I were never able to come to an agreement about pursuing another adoption, despite my pleas and prayers.

I was ready to give up and just accept that Squirrelboy was going to be an only child, but, when Squirrelboy was 5 Mr. Engineer asked me to consider trying again. I shared my concerns with my OB, who suggested I get some blood tests done to see if there might be a reason for my two miscarriages. I tested as heterozygous for the Factor V Lieden gene mutation, which means that my blood clots more quickly than normal and I'm at a higher risk to develop blood clots. The theory is that women with this mutation might be at a higher risk for miscarriage because the develop blood clots that block blood from getting to their babies in utero. My doctor recommended that, if I wanted to try to conceive again, I start taking a low dose aspirin.

With a possible solution in hand, I decided to give Mr. Engineer's hope for a second biological child one more chance. I told him he had one month. If I wasn't pregnant at the end of the month we would either have only one child or acquire a second child through adoption. Spoiler alert.... a month later I discovered I was pregnant. I can't say for sure if it was the aspirin that did it, but my pregnancy lasted beyond 8 weeks. The hyperemesis gravidarum came back with a vengeance and at one point I was so dehydrated my doctor admitted me for an overnight stay for IV fluids. The timing turned out to be perfect, because while I was in the hospital I developed blood clots all the way down one leg.

The surgeon told me that the surgery necessary to remove them would put my baby at risk, but that it offered the best chance for me to make a full recovery. I decided to take the risk, and the result was that the surgery was successful and my baby, who (another spoiler alert) turned out to be Kittygirl was perfectly fine. I was put on stronger blood thinners for the rest of my pregnancy, and, at 39 weeks my labor was induced so that my doctor could be prepared in case the blood thinners caused excessive bleeding during labor. Everything went smoothly, however, and Kittygirl was born just 6 weeks before Squirrelboy's 6th birthday.

Eight years on, now with two amazing children facing challenges I couldn't have predicted when either was born, I wonder about those other three children, especially on this day, which is also the day I learned of my second miscarriage. I wonder what those children would have been like. I wonder if, had my second pregnancy gone as well as the first, Mr. Engineer and I would have decided to have at least one more child. We both come from families of three children, and originally I wanted four.

I also wonder if any of those children would have faced the same challenges the siblings they never met have faced, or if I actually would have had at least one child with no disabilities, invisible or otherwise. Would that baby who started growing in the wrong place have been born without dyslexia or ADHD and never developed diabetes? Or, alternatively, would the child conceived shortly after him or her have had an even more profound manifestation of dyslexia with a severe peanut allergy thrown in just for fun? What about that child I was sure God wanted me to conceive but nevertheless my body was unwilling to sustain? Would that child have been the little brother Squirrelboy long desired? Would he have surpassed Squirrelboy academically and created cause for resentment?

I'll never know the answers to these or many other "What ifs" about the children that enjoyed such brief lives within my body, but I'll never forget about them either. Miscarriage and infant loss is an all too often forgotten grief in our society. Unlike some women, I have not chosen to name the children I carried so briefly. It just never felt right to me, not even having known their gender. However, I hope I never forget to remember them and to let others who have suffered the same pain know that they're not alone.


Monday, October 14, 2019

In Which My Son Wins (Or Maybe Loses) the Genetic Lottery

Squirrelboy has a lot going for him, statistically speaking. He is white. He is male. He is Christian. He is from an upper middle class family. He was breastfed not just for a year, but well into his preschool years. His parents read to him regularly in early childhood and still continue to do so. He has had the privilege of traveling abroad as well as to many parts to the U.S. In terms of being given a good start in life he is sitting in clover. That's not the way he sees it, however.

He does recognize that he has a lot of privilege and a lot of advantages, but he thinks that the hand our genetics dealt him was incredibly unjust. Neither of us knew this about the other at the time, but, when we married, Mr. Engineer and I were creating a potential family with a high genetic risk for dyslexia on one side and ADHD on the other. Heck, our poor kids got an extra helping of dyslexia risk since it seems to run in my family as well, though I'm not affected.

When one parent has dyslexia, every child born to that parent has a 50% risk of having dyslexia. In our case, it happened to work out that one of our two kids has dyslexia, thus 50% of our kids have dyslexia, but the math doesn't always work that way. The risk is 50% for each child.  Another couple I know that could have passed down dyslexia genetically has three biological children, none of whom have dyslexia. A third couple I know has four biological children, three of whom have dyslexia.

For ADHD, the story is more complicated. Having a parent with ADHD definitely increases the risk for a child to have ADHD, but I couldn't find any hard and fast numbers. ADHD is also affected by environment in ways that dyslexia is not, which complicates the picture. The one statistic I could find was that 1 in 3 fathers with ADHD have a child with ADHD. I couldn't find any statistics about mothers, so we'll just have to presume that having a mother with ADHD (officially diagnosed or not) also increases a child's risk.

So any child we had had an approximate 50% risk of having dyslexia and maybe as much as a 33% risk of having ADHD. I don't know of any studies that show that the risks compound each other, but I wouldn't surprised if they did, even if only anecdotally, since the two often coexist. Our genes combined to create one child with both challenges and one child with neither, and the child who got both is pretty annoyed about that.

It does no good to point out to him that his sister was apparently born with a susceptibility to develop an autoimmune disorder and she wound up with type 1 diabetes. He simply points out that a) Kittygirl wasn't born with T1D and b) there is no guarantee that he won't develop diabetes or some other autoimmune disease at some point in his life.

So what can we do as parents to assuage his anger at the genetic profile we unwittingly passed down to him? We can remind him that we also passed good things down to him and gave him the best start in life we could, which was pretty darn good because of all the privilege we enjoy. We can also remind him that he's made it this far in life with much more success than failure. We can remind him of all the people in the world who have similar challenges and have gone on to be successful.

Finally, we can remind him that he is a unique and beloved creation of God and that God can and will use him to impact the world. Sometimes this may happen in spite of his challenges, other times it will happen because of his challenges.




Friday, October 11, 2019

In Which Dyslexia Has, Ironically, Made My Son More "Well-Read"

If you're old enough to remember when Alanis Morissette's song "Isn't It Ironic" was a hit, you  may also remember that the large majority of things referenced in the song are not, in fact, ironic but merely unfortunate. The definition of the word irony is frequently stretched in popular culture, and I can't say with absolute certainty that what I'm posting about is true irony or just a somewhat unexpected turn of events, but I decided that, if a hit singer/songwriter can misuse the word with impunity, I can take the risk :).

I was blessed to have a wonderful model in a mother who read to us frequently, well past the age when many parents stop reading to their children. In fact, in the case of my younger brother, who has no official diagnosis but fits all the criteria for dyslexia, she read nearly all his school material out loud to him all the way through 8th grade. I'm not sure whether he switched over on his own in high or she decreed it, since I wasn't living at home during his high school years. Even my typical older brother and I benefited from many years of listening to great books. This includes a readaloud of The Swiss Family Robinson, which I speculate she may have edited, because I discovered upon reading it as an adult that it is in the running for most boring book in the history of boring books.

When it became clear that it would be a long time before Squirrelboy was reading independently, I doubled down on my commitment to read aloud to him. I read him most of the Magic Treehouse books that were out at that point (seriously, how does Mary Pope Osborne keep cranking those things out?), and I have to confess I actually enjoyed them. I read him quite a few other silly, easy series books that his peers were reading. However, I also read him books that a child of his age who was only reading on his own would be unlikely to encounter. When Tonight on the Titanic led Squirrelboy into a Titanic obsession, for instance, we read our way through most of the Titanic books in our library's collection, including a few from the adult section.

Squirrelboy also discovered the pleasure of listening to audiobooks. He started devouring the Percy Jackson series via audiobook the summer after 3rd grade, and also listened to the follow up Heroes of  Olympus series, though, to my chagrin, he never really got into the books about Egyptian or Norse myths.

I had the opportunity to fully indulge in my readaloud obsession during the three years I was homeschooling Squirrelboy. In November of his 6th grade year we put our regular history curriculum aside and spent a month doing a unit study on the Pilgrims (whom we learned, as an aside, did not actually call themselves that). If he had been a typical kid who was reading well by second grade and had gotten used to doing most reading independently, I might have stuck with the curriculum, had him read a chapter book about Squanto, read aloud a few picture books, and called it good. However, because I had accustomed him to hearing books officially "above his level," I was able to add in a lot of nonfiction that gave a more balanced and nuanced view of the Plymouth colony and the Native Americans with whom they forged a tentative and, ultimately, temporary peace.

Most recently, Squirrelboy has been listening his way through most of the work of Agatha Christie via the Libby app on his phone. I went through a brief Agatha Christie phase in high school, but I only made my way through about half a dozen of her books before I turned away to other interests. I also continue to read aloud to him when we can fit it into our busy schedule, occasionally something for school but most often something for pleasure. Just last night I introduced him to one of my favorite, and, sadly, little known, books: L.M. Montgomery's The Blue Castle, my copy of which is pictured below in all of the glory of the early 1990's editions of the author's work.

Not very many teenage boys would be interested in a love story taking place in early 20th century Canada, but, because I have conditioned Squirrelboy to enjoy good books of all kinds, he's eating it up.

Of course, all of this is possible if your kid isn't dyslexic. However, I can testify from my experience so far with Kittygirl that it's more difficult. Because she reads well, she's more likely to want to read on her own in the evening than to have me read to her. She does love listening to audiobooks in the care, however (we just finished the Harry Potter series, which we started over the summer), so all hope is not lost.

Thursday, October 10, 2019

In Which I Was Afraid to Have My Son Evaluated for ADHD

As I've shared before, we began to suspect that Squirrelboy might have ADHD when he was fairly young. I actually didn't think about it when behavior expectations in school became overwhelming to him, but Mr. Engineer shared later that he began to suspect ADHD when Squirrelboy was a preschooler. However, we didn't actually pursue an evaluation until the spring of his 6th grade year, when Squirrelboy was 12.

This was partly due to the fact that Squirrelboy's teachers dismissed the idea of him having ADHD throughout elementary school. However, we could have pursued a private evaluation despite that. The main things holding us back were the facts that we weren't sure we wanted to put a label on him, and we were afraid he would automatically be medicated, which might be detrimental to him.

Things came to a head during my first year homeschooling Squirrelboy. All the excuses were gone. Squirrelboy was alone in the house with me. There were no other kids distracting him. He could get up and move around as often as he needed to. I could change my teaching tactics if one style wasn't working for him. However, his constant distraction was still driving me up the wall. There were days that I couldn't get through a paragraph in our history book without him interrupting me ten times.

Despite all this, Mr. Engineer was still leery about pursuing an official diagnosis for Squirrelboy. He had heard horror stories about ADHD medication turning kids into zombies. Squirrelboy is a great kid, with a quirky sense of humor and a sweet spirit. Mr. Engineer didn't want to lose any part of him by pursuing a medical remedy for his unique brain.

Eventually, Mr. Engineer agreed to let me bring up the possibility of ADHD at Squirrelboy's 12 year well check in March of his 6th grade year. Our family doctor, who is amazing in so many ways, asked a few questions and had me fill out a survey. Based on that information, he referred us to a behavioral health practice for further evaluation.

Amazingly, the practice had an appointment for an initial interview the very next day. As soon as the psychologist started asking us questions about why our doctor referred us there, I felt validated for pushing to pursue this route. She affirmed my thought that Squirrelboy exhibited symptoms of ADHD and might be helped by having an official diagnosis. We then made an appointment for a series of psychological tests over the next month.

When we met with the psychologist to go over the results of the tests I was a bit nervous. I was both afraid that she would say it was all in our heads and Squirrelboy was just a normal, active boy who needed some time to mature (the line all of his elementary school teachers gave us) and afraid she'd say he definitely had ADHD and medication was the only possible route to follow.

She confirmed a diagnosis of moderate ADHD, combined type. She then shared with us several possible routes for treatment including counseling, medication, or a combination of the two. Squirrelboy is not a fan of sharing his feelings with strangers, and therefore wasn't keen on the idea of counseling. We decided to try the medication route first, and pursue other avenues if that failed or if it partially succeeded but we felt we needed additional tools to help Squirrelboy be his best self.

We were referred to a psychiatric nurse practitioner to begin a trial of stimulant medications for ADHD. It was a long journey. The good news is, in contrast to many, Squirrelboy did not experience side effects from any of the medications he was put on, even at the highest doses. The bad news was, even at the highest doses, the first three medications had no discernible affect on his ADHD symptoms. He reported that he felt no different, and I noticed no difference in his behavior.

Because of this lack of response, his nurse had him take a genetic test called Genesight, which is supposed to show your likely response to a variety of types of medications based on your genetic profile. We filed the information away in case Squirrelboy ever has another chronic condition in need of treatment, but it was no help whatsoever regarding ADHD medication because, according to his genetic profile, Squirrelboy should have responded normally to every medication we had tried.

Finally his nurse prescribed extended release Concerta, and a light appeared at the end of the tunnel. About half an hour after taking one pill of the smallest dose the first day, Squirrelboy noted, "I feel different. My brain is a little less noisy." It didn't make a huge difference in his school performance, but it was a great sign.

Squirrelboy's nurse continued to increase his dose until we reached a point where there was a definite change in his ability to concentrate and do his schoolwork. At that point, we decided he was stable on that dose. We eventually added a small, short acting dose of Ritalin in the afternoon as the Concerta was starting to wear off. Mr. Engineer had started teaching math, usually in the evening, and Squirrelboy had lost his ability to concentrate by then.

Our fears that medication would change Squirrelboy's personality turned out to be completely unfounded in his case. His medication instead allows him to be the best version of himself. Unlike the vast majority of kids on stimulant medications for ADHD, his appetite is not even affected.

Our experience is not universal, of course. In some cases, medication for ADHD is not the right choice. In other cases, it's somewhat helpful but the side effects are so severe parents have to make the decision to stop the medication in the interest of the child's overall health. However, from my very limited perspective, it seems that the negative medication stories often happen because a doctor, sometimes just a pediatrician or other general practitioner, just prescribes a common medication (most often Adderall), and leaves it at that. They might increase the dosage, but they blow off side effects and say that that's just a sacrifice that has to be made.

I wish we had pursued a diagnosis sooner. Having a label has not hurt Squirrelboy. It's given a name for why his brain works differently from the brains of most of his friends. His medication allows him to be his best self in school and other endeavors that require serious concentration and not be hampered by his brain going a million miles an hour. I wish everyone with ADHD could experience both a timely and a thorough, thoughtful diagnosis, resulting in a treatment that allows them to be their best selves.



Wednesday, October 9, 2019

In Which I Share a Simple Tool That Makes ADHD Less Onerous

When you have ADHD, remembering more than a couple details at a time can be really difficult. It's really helpful, as Squirrelboy has transitioned to public school this year, that his school uses a program called Canvas for most of the work the students do. Nearly all assignments are given and submitted through Canvas. It's a million times easier than remembering to write down the homework every day (which apparently isn't a thing anymore, but which I had to do in high school), or even looking up assignments on various teacher websites. However, the program has not advanced to the point where it moves the assignments straight into Squirrelboy's brain, in a place where they won't be forgotten :).

Especially when there's a project that has to be completed over several days, or when a test or quiz is announced several days beforehand, it's hard for Squirrelboy to remember when to submit something, when to study, or when to work on a portion of his project. He has somehow developed the idea, presumably because I was his teacher for 3 years, that I'm the person who should remind him about these things and make sure he's doing them.

Here's the problem: my brain also has a hard time remembering more than a few details at a time. I don't have a clinical diagnosis of ADHD, but, the more I've learned about it through Squirrelboy's experience, the more I realize he inherited this type of brain from me. Since a portion of my brain has been taken up 24/7 with diabetes details for the past 2 1/2 years it has become significantly harder for me to remember other details.

Enter the whiteboard. We put the whiteboard up before I started homeschooling Squirrelboy for 6th grade. Since the kitchen was going to be the main schoolroom, it made sense to put the whiteboard on the kitchen wall, right above the shelf where homeschool books were stored. It did come in handy for various school purposes, but it has come in handy even more for every day life.

When Kittygirl was first diagnosed with T1D, it came in handy for writing down and calculating the number of carbohydrates she was eating. We still use it for writing down some diabetes details, though we no longer feel the need to write down every carb and add it up on the board.

For some reason, it didn't occur to me until this fall that it would be useful for me or Squirrelboy to write the things he wanted me to help him remember on the board. We've started doing that, and it has made a huge difference. Pictured is an example of a reminder on the board from a couple weeks ago. Squirrelboy did indeed remember to submit the stuff for health class that evening when everyone else was out of the house. When your brain isn't up to doing a task on your agenda without assistance, it's time to use that very brain to find a workaround.


Tuesday, October 8, 2019

In Which I Realize Just How Useless My College Major Was

Today at breakfast Squirrelboy commented that some of his friends who go to other schools have been surprised that his favorite class in high school is English. Mr. Engineer and I reminded him that we, too, were surprised his favorite class was English until we got to know more about his teacher and how the class is run. What Squirrelboy loves the most is the fact that, because his school focuses on project based learning, they're learning to write things with a practical purpose and learning that writing will be useful in their adult lives. I told Squirrelboy that, while I loved English class because reading and writing are my favorite things in the world, most of the writing I did was writing papers about books that were simply for the purpose of my English teacher and read an assign a grade too. Then I paused and realized that, because I have both a B.A. and and M.A. in Spanish with a literature focus, that's pretty much what I spent the majority of my educational career doing. I read books that most people don't care about and wrote papers about them that were of no practical use to anyone. Well, good thing I wasted six years of my life......

No, seriously, my college and grad school experiences were great and helped make me the person I am today. It is, in fact, really useful in my daily life to be proficient in Spanish and to have a knowledge of other cultures. However, when it comes to actual marketable skills, my education netted me very little. Ultimately, that was not detrimental to me. I did manage to pick up some teaching skills by being pushed into the deep end as a teaching assistant in grad school. I continued teaching part time while working as a campus minister for a parachurch campus ministry and attempting to raise up enough financial partners to do ministry full time. The whole fund development thing never worked out well for me, and I eventually left and found a full time job teaching Spanish at a small Christian college near Chicago. I would have needed to continue my education and get a PhD to keep that job and get tenure, but then year Mr. Engineer and I got married and moved back to Kentucky after just one year teaching there. I continued to teach part time as an adjunct at two local schools and substitute teach in the public schools until Squirrelboy was born. Since then I've been a stay at home mom. I made a few (literally, just a few after expenses) bucks teaching coop classes when I was homeschooling Squirrelboy, but, for all intents and purposes, I have not been gainfully employed for the majority of my adult life.

This has worked out fine for me because a) I was born into privilege and could fall back on help from my parents when I was single and not making much money b) I had not chronic medical conditions that required regular doctor visits or medication so it was fine that I was without insurance for a couple years and c) I'm now married to a man with a stable job, a good income, and health insurance. If either a, b, or c were taken away I could have been in serious trouble at some point and I might have thought more about studying something that would more logically lead to a job. I had the freedom to study what interested me, and I never realized what an incredible gift that was. When I look at my kids today, I wonder if their challenges will allow them to have that same freedom.

Thankfully, the medication Squirrelboy takes for ADHD is not necessary for him to stay alive, but it makes the parts of his life that involve attention to detail and focus about 1,000 times easier. Right now this mostly applies to school, but it's likely to apply to whatever job he has as well. He's currently interested in photojournalism and/or filmmaking. Neither job, at least in today's marketplace, normally comes with a steady paycheck and insurance. Before we meet our deductible, his ADHD medication is $200 a month. I don't even want to know what it would be without insurance. I don't want his atypical brain to stop him from pursuing his dreams, but I do wonder if it will have to be figured in.

Kittygirl, on the other hand, does need synthetic insulin to live. In case you've been living under a rock, and haven't heard about this, there are many people in the U.S. who can't afford their insulin. There are multiple stories of young adults who died just months after leaving their parents' insurance or being laid off because they couldn't afford the substance that keeps them alive. In addition, managing Kittygirl's diabetes is a million times easier because of her insulin pump and continuous glucose monitor. People  with diabetes without insurance, or with pathetic insurance, struggle just to get enough insulin to stay alive. Using devices like Kittygirl's is completely out of reach. I don't want this to be Kittygirl's story in young adulthood. I want her to be able to pursue her dreams and not worry if they don't result in obvious marketable skills. However, already now I find myself nudging her toward careers that would be likely to provide a good insurance policy.

Here's where I turn political. It shouldn't have to be this way. In the majority of nations in the developed world, healthcare is a right and not a privilege. Yes, you can't always get the absolute top of the line services that the privileged elite in the U.S. can get, but you can still get what you need. Sometimes there are waiting lists for things like insulin pumps and continuous glucose monitors. However, you can eventually get them if you're patient. You're not fearful of going bankrupt if you get cancer or you or your loved one are involved in a catastrophic accident that results in months of hospitalization. My hope and prayer is that, before my kids reach young adulthood, the U.S. will have caught up with the rest of the developed world and being able to afford to stay alive (in Kittygirl's case) or to live well (in Squirrelboy's case) will not be on their list of adult responsibilities.

In Which Squirrelboy is a College Student, And I'm Not Done Parenting, But Basically Done Blogging

Squirrelboy is now about halfway through his first semester of college. I won't give you details about how his experience has been becau...