Hello Again

Hello again.

I realized, looking on here, that it's been more than a year since I last posted.  I am sorry for that.  There have been many factors, not least of which is my ongoing depression.  I keep telling myself that I need to write, but I just couldn't do it.

Anyway, I'm back, and I'm taking steps to make sure that I'm staying around.

Different book, but still reading!

So, what's new?  I'll tell you.  Rowan, my 9-year-old, has fallen completely in love with Harry Potter.  Rowan, who was never, ever, EW, no WAY, Mom going to read Harry Potter.  Actually, he mainly listens to audio books instead of reading print.  It's easier for him to focus.  We've been listening to audio books by C.S. Lewis, J.R.R. Tolkien, and Roald Dahl.  Good stuff, yes?  But everything has its saturation point, and although I never thought I'd say this, I found myself begging to please never make me listen to Charlie and the Chocolate Factory again!  Enough!  No more!!






So I convinced Rowan to listen to just the first chapter of Harry Potter, and that was it.  He was hooked.  I made the introduction, and J.K. Rowling did the rest.  He's been binge-listening for the past three weeks.  He's halfway through book 5 now.

Yep, that's the face.

Naturally, this translates into nearly everything else he does as well.  Legos?  He's building broomsticks and having face-offs between the different characters.  Minecraft?  He built a boys' dormitory & girls' dormitory, both of which have a portal to the nether in the back.  Whaaaat?  I didn't think even Hogwarts was THAT unsafe!  He's placed a lot of armor stands around, decorated them with clothing, and named them according to various characters.  So far he has Neville, and Draco Malfoy and his gang.  Rowan, of course, is Harry Potter himself.

Whomping Willow?

He also roleplays at home, and insists that everyone joins in.  I alternate between being Hermione or Mrs Weasley.  Lili, our dog, of course plays Fang.  Henry, age 6, is generally relegated to being Ron, although Henry doesn't know or care, and refuses to follow instructions.  He's a free spirit.

So I apologize, friends, if sometime in the next five years I get tired of Harry Potter.  It's fun right now, but who knows where this obsession will lead!  You may have to save me from it all!

Wild as a summer storm.

Henry continues his search for Narnia.

Emotions Without Words

As the mother of two autistic children, I face a lot of challenges.  My two children are very different from each other in terms of abilities:  Rowan, age 8, is extremely bright in all the obvious ways.  He has read through The Chronicles of Narnia; he listens to Roald Dahl and J.R.R. Tolkien on audio book; he is finishing Garth Nix's Keys to the Kingdom series.  He has read Charlotte's Web and Stuart Little.  He excels in math, and is very articulate.  He has been speaking his mind in complete sentences since he was two.  He has an uncanny ability to use logic, and he is extremely creative.

Henry, age 5, is less obvious in his genius.  He is very low verbal, and much of what he does say is echolalia--repeating what he hears around him.  If he is hungry, he asks me, "Do you want food?"  If he pees his pants, he asks me, "Are you wet?"  He still wears pullups, although we are trying to get him fully potty trained before he starts kindergarten this fall.

However, Henry has been reading since he was three.  He continually astounds us with just how much he can read.  He reads everything he can get his hands on, and loves the text more than pictures.  Once we figured out that Henry's preferred method of communication is writing, things got a lot easier.  The first thing he said to us via "writing" was to spell "CHEERIOS" on the fridge with magnets.  He got the point across.

Thanks to two years in an extremely good preschool, Henry's verbal skills have improved.  Talking to him used to generate no response at all.  Now he answers simple questions and talks to let us know what he wants.  However, emotions are more difficult to convey.  Yesterday morning Henry went into meltdown mode, with nothing I could do helping at all.

He wanted his shoes off.  I took them off.  The howling continued.  He wanted to build train tracks.  Okay, I got those set up on the coffee table.  Then he threw a fit because he wanted to put them together himself.  I kept asking him what was wrong, but he couldn't find the words to tell me.  It's frustrating when you know there's something wrong, and you just can't get the message across!

At last, as he sat sobbing on the couch, Henry managed to say, "Where's the train?  Where's the train?  Where's the train?"  Aha!  He couldn't find a train to put on the train track!  Once the problem was known, it could be quickly addressed.

I think communication is probably the most challenging bit of parenting an autistic child.  What is your experience with that?  Do you have any tricks that work for you? 

 

Julie

Hi.  I've been gone for a while.  Have you noticed?

A lot has been going on with me.  I can't go into it right now.  Suffice it to say that I have been struggling a lot with depression, and things which would be distressing even without depression have exacerbated it.  I simply have not had the energy or focus that I would like to devote to writing.

There are sustaining forces, thankfully.  I want to tell you about one of them.  Really, I should have mentioned her long before now.  It always feels personal writing about someone I know, and it can be hard to get the words out.  I'll do my best to tell you about Julie.

This is Julie.  Well, one of them is.  They aren't both Julie.  The other person is Savanna, about whom I will tell you another time.

But seriously, guys, Julie is AMAZING.  I am an introvert by nature, and shy about asking people to hang out.  I haven't always been that way.  Years of unpleasant happenings and various rejections drilled that into my psyche.  So if I seem unfriendly, or I don't ask you over, or I say we should hang out and yet I never make plans--it's because I am terrified, TERRIFIED of rejection.

Somehow Julie understands this.  She texts me, "Hey, what are you doing this weekend?  Let's hang out."  And of course I want to, because she's completely awesome, and lots of fun.  I just find it really, really difficult to extend the invitation myself.

See, here's the thing.  I think that EVERYONE is much too cool to want to hang out with someone like me.  Logically, I know that's not true.  Logic doesn't play well with feelings.  It took years of Julie's persistence (I've known her since 2004!) for me to finally accept that maybe I'm not a pity case.  Maybe she actually does enjoy my company.

Quite apart from the much-needed self-esteem boost, she just does wonderful things.  When she moved to North Dakota, she gathered together a box of the most wonderful, random, exciting things and mailed it to me.  Such a lovely surprise!  Tea, chocolate, honey, and lots of fun toys.  Most of the cool mugs I use are from her, and I think of her every time I have my morning coffee or tea.

I can talk to Julie about what's going on in my life, without fear of judgment.  She dotes on my children, and they adore her.  I've been seriously depressed for some time, and last week she showed up with a bag full of good things, including an autographed CD.

Looking over what I've written, I realize that I still haven't managed to capture the essence of Julie.  She is goodness, she is hope, she is light in a dark world.  She is kindness personified, and she shares her journey toward personal betterment, which in turn inspires me to be a better person.  I can't believe how lucky I am to call her my friend.

Conversations with a 7-year-old

[Written April 30; not finished & published until now.  Because that's how it happens sometimes.]

This morning the kids slept in.  Which is to say, when I got up at 7:30 this morning (after actually getting enough sleep last night, for a change!), they were still snoozing.  I got a shower without interruption and got dressed, still without interruption.  The baskets of clean laundry which contained the socks I wanted to wear were in the kids' room, though.  When I walked in to get them, I saw Rowan lying in his bed, eyes wide open, looking peaceful.

"Good morning, Mama," he said.  

"You look quite comfy," I remarked.

"Yes," he said.  "Will you snuggle me for a while?"

I needed to work on finances.  I needed to have breakfast.  I needed to figure out the logistics of registering him for school today.  I looked at that happy face, just wanting some time with ME, and said, "Sure for a minute." It was much longer than a minute, of course.  We lay snuggled together and talked about our fun day yesterday, going to a children's museum and his cousins' house.  His eldest brother, Noah, turned twenty yesterday (!), and dyed his hair blue to celebrate.  

Rowan and I talked for quite a while before I asked, "So, what do you think you'd like to be when you grow up?"  

He thought for a while, then asked, "Do the people who work at fairs get to go on the rides?"

 I laughed.  "Well, not while they're working, but maybe after hours."

He thought again for a while, then said, "You know, Mama, when I grow up, I think I'd just like to be me." 

To be me.   Oh, that struck me right in the heart.  How many of us truly just want to be ourselves?  I mean, we talk about it all the time.  "Be true to yourself."  "Be the best YOU you can be."  "Just be yourself."  But how many of us really like ourselves well enough that that is our chief aspiration?   

I know there are parts of me that I really, truly don't like.  There are parts I like, too.  I am (mostly) kind.  I am (mostly) generous.  I am (mostly) thoughtful.  I am (mostly) honest.  But that honesty, that tends to get me in trouble.  Because the thing is, I like to be absolutely, perfectly clear about what I'm saying, with whomever I am conversing.  Sometimes that means over-explaining things.  Sometimes that means saying too much.  One can be honest without spilling everything in one's mind.  So then I try to backtrack or conceal, and I hate that, because that feels like deception.   

I want to just be comfortable being myself -- a bit too open, loving people fully and freely, speaking my thoughts without apology, saying what needs to be said without retracting it if it doesn't meet with the reception I hoped for.  I want to say what I think without worrying what other people think about my words.  I want to be considerate of other people's viewpoints without conceding my own. I want to accept that I am human, I am flawed, I make mistakes, and that's okay.  Making a mistake (or a whole heap of them) is not the end of the world.  Truly.   I want to be so confident in myself that others who are struggling can look at me and say, "If she can do it in her imperfect state, so can I."  

So can I!  I am trying to find the way to being authentic, being true to myself, to be the best ME I can be.  For now I'm here, putting one foot in front of the other, plodding along and trying to stay upright.  And that's okay.   

I squeezed Rowan a little tighter and said, "You know, Rowan, I think being yourself is the very best thing you can be."  

Rowan, Age 7

Rowan is my first child.  Or my third child, depending on how you look at it.  He's third in order of age, but the first one I gave birth to myself.  Blended families are complicated when it comes to figuring out number order.  In any case, Rowan is seven.  He is bright as a button and smart as a whip, and he adores his elder brothers and their friends.

Rowan also has a stubborn streak a mile wide, and lately he has begun to assert his independence.  He's been saying things like, "I don't have to," and "You can't tell me to do that," and "You're not the boss of me!"  Oh my.  I haven't been letting him get away with it.  There's been lots of, "Excuse me, young man?" and "Would you care to repeat that again?" and "As long as you are living in a house that Mommy and Daddy and Grandma and Grandpa are paying for, eating food that we buy with money that Daddy works hard for, wearing clothes that we bought for you, you are not in charge and you don't get to make that decision."  We do try to be reasonable and discuss options when it's not a vitally pressing matter.

Rowan's latest interest is watching marble videos on YouTube, particularly the Wintergatan Marble Machine, the Epic Christmas Marble Run, and the ROBLOX Mega Marble Run Pit by EthanGamerTV.  That last one inspired him to create his own explanatory video yesterday.  We were playing in the backyard when suddenly he said, "Mommy, I'm going to make a YouTube video.  You need to video me."  I obliged him by taking out my iPhone.  The results were hilarious, and, I thought, pretty darn good for a 7-year-old making a video for the first time.  He did have to chide his camerawoman a few times when she didn't immediately catch what he wanted her to do.

Note:  RowansTallTales.com does not actually exist (yet).  Rowan just thought it sounded cool.

He's something, that Rowan.  He is simultaneously supremely confident and insecure.  He will brag and show off like nobody's business, but put him in front of an audience under pressure and he will curl up in Mommy's lap, hiding his face.  He loves to play with other kids.  He loves to stay home and play alone.  He only wants to play games EVER, Mom!  and he devours chapter books like a starving man.  We're currently rereading Ozma of Oz, the third book in the Oz series.

Last night I sent him upstairs to take a shower before bed.  When five minutes had passed and I didn't hear water running, I went to investigate.  I found him standing on the shower bench, which had been parked in front of the sink, stark naked, with the mirrored doors of the medicine cabinet angled to reflect himself countless times.  He was dancing and shaking his booty.

"Rowan," I said, "what do you think you're doing?"

"I just like to look at myself, Mommy," he said.  He got down and hopped in the shower.  When he was done, he toweled off and swaggered to his room.  Oh, he's got the swagger and the strut down, alright.  I'm not sure where he got that.  I don't think I've ever been that body-confident in my life.

There were tears yesterday.  There was conflict--a lot of it.  There were headaches and frustration.  I wondered, as I wonder every day, if he will ever get it.  But as we snuggled up to go to sleep, he leaned over to kiss me and whispered, "I love you, Mommy."  Somehow, that makes it all worth it.

That's my boy.

A Listening Heart

One of my friends just started a job.  He was put with another person to assist and be trained.  After his first day, I asked, "So how did it go?"

He replied, "It was great!  It was really nice to be with someone who actually listened to everything I said, and let me talk, and let me ask all the questions I needed to."

Oh.

That left me wondering, how often do I truly listen?  How often do I take the time to stop what I'm doing and really hear what the other person is saying?  How often have I let the other person's talk fade into the background while I wonder about finances or dinner or schedules or whatever else crosses my mind?  How often have I said, whether truly or in jest because I just didn't hear, "I'm sorry; I wasn't listening to you"?

I am ashamed.  I tell people frequently, "I'm here for you.  If you need a listening ear, I'm available.  You can talk to me."  The truth is, yes, I'm available to listen--at the same time as I focus on a hundred other irrelevant things.

Here's a common example of mealtime conversation:

6-year-old:  "Mommy, did you know that Pluto is a dwarf planet?"

Me:  "That's really cool.  Eat your food."

Why?  Why the constant attitude of "Get this task done quickly so we can move on to the next task"?  Yes, sometimes we're in a hurry, especially in the mornings.  Why can't I get up fifteen minutes earlier so we can slow down a little?

The fact is, I can.  I just don't like to.  I like my sleep.  I like to hear my own thoughts instead of focusing my mind on what someone else is saying.  I like to let other people make the effort of conversation.  That attitude, however, is not productive, and if I continue, I will drive people away.  My children.  My husband.  My friends.

The fact that someone who cared enough to listen was the important thing my friend took away from his first day, should tell us all how vital it really is to just pay attention.  It also speaks, unfortunately, to how accustomed he is to not having people listen.

It's time for us to make a change.  It's time for me to make a change.  Put down the phone, the tablet, the book, the puzzle, the laptop, or whatever is keeping you from giving full attention to those around you.  Phones and games have their place; sometimes we do just need to chill and relax.  And honestly, sometimes in public I use my phone as a Do Not Disturb sign.  When we're with the people we care about, though, let's make sure we're actually with them--not on Facebook or buried in a book or playing Dragon City.  (Unless, of course, it's mutually agreed upon to hang out and ignore each other.)  We can do this.  I can do this.  I am determined.

New Treatments, New Hopes

So, a while back I promised you a blog about why I'm feeling so down lately. Then France happened, and the Syrian refugees, and I just haven't had the energy to spare to write anything else of real significance. 

A lot has been happening. You might remember that back in June, I told you that Matthew was being put back on Tysabri for his MS. The same Tysabri that could potentially cause him to develop PML (progressive multifocal leukoencephalopathy), which could potentially kill him. In January 2013 they found antibodies for it in his blood and stopped the Tysabri treatments immediately. This year, after no other medicines were effectively treating the MS, his doctor made the decision to try Tysabri one more time.

Well, between June and October the amount of antibodies in his blood went up times five.

Times FIVE.

That's huge.

He was immediately taken off Tysabri again, and his doctor said he will never, never, NEVER be put on it again. The problem then was, what medicine COULD he be given? Tysabri is one of the heavy hitters, and we'd already seen that anything less was ineffective for Matthew. When he takes the weaker medicines, he might as well not be taking anything, but with horrible side effects.

So we settled on a Very New Drug called Rituximab. It's a twice-yearly infusion, although initially he'll get two doses two weeks apart.  We went in November 24 for him to get his first dose, and we were there from 8:00 a.m. until 4:30 p.m.  That is a LONG day.  Midway through he started to get bad chills, nausea, and dizziness, so they paused it until the symptoms went away.

Being Matthew, he insisted on going to work anyway that evening.  He would be fine, he said.  So I dropped him off about 6:30; he said to pick him up at 11:00.  Well, about 9:15 I got a call saying to come and pick him up.  I set off (it's a half hour drive), and when I was almost there, he called again saying I'd need to take him to Emergency.

Chills, nausea, dizziness--yep; it had all come back.  The ER staff gave him medicine which got rid of the symptoms and sent us home.  He's been okay since, except for one more short bout of chills the next day.  Other than that there haven't been any problems that we've noticed, but his doctor said she wants to meet with him tomorrow.  He's having another infusion Tuesday, so this time they're going to take more precautions ahead of time so hopefully he won't get the nasty side effects.

I am tired.  I am so unutterably weary.  Life is weighing heavily on me with medical and financial concerns, and last night I received even more medical concerns.  Some days it's all I can do to get out of bed and face the day.  I want to hide in a cave somewhere and pretend the world doesn't exist.

Since that's not an option, thankfully I have good friends who bear me up.  I feel so very alone most of the time, and when they come over it's like light and sunshine entering my house.  I don't know how I'd manage without them.