Parenting for Real, Not for Show

 I've been thinking for quite some time about getting a Twitter account and Facebook page for The Mothering Daze.  Not that I expect it to go viral or anything; I'm not THAT interesting.  I just want to put my experiences with autistic children (and life in general) out there in case it helps anyone.  One of the things stopping me is that I don't have any sort of logo or background banner.

Yesterday I asked Rowan (12) if he could make one for me.  He did!  --On Microsoft Paint, so its quality is questionable, but I still love it.  It sort of embodies my life.  Anyway, while he worked on that I busied myself with creating accounts for myself.

Enter Henry (9):  "Mama, will you play Multiplication Splat! with me?"

"Not right now, honey," I replied, still working.  Type, type, type.  Look at Rowan's design.  Revise.  More typing.

Henry again:  "Will you play Multiplication Splat! with me?"

It suddenly occurred to me what I was doing.  There I was, being all lofty and wanting to spread my words to everyone about what a fantastic job I was doing with parenting, and I was putting off my own child, right there in front of me, just wanting to play a game.

Rowan and I stopped what we were doing.  We went to the table and played the game.  And it was FUN!  Rowan said it's his new favorite.  Henry won both rounds.

It's no secret that I struggle with depression.  Depression has a nasty way of making me close off from people and try to hide in my own space.  Obviously I can't really get away from my children, because they can't be left alone, so for me it looks like sitting in my chair with a book or my phone.  I make plans to clean my house or do fun things, but any slight interruption or deviation causes me to abandon everything.

I think the start of school has been really good for both my children and me.  We've been forced to get on a regular sleeping/waking schedule.  They are with friends and good teachers, and I am given the space I need to unwind.  Well, except that I've been exceedingly busy helping plan a complete kitchen redesign.  But I'm planning it with ADULTS, which means my constant awareness of my children can be put on pause.

And so I've been gradually emerging from my self-imposed isolation.  I emptied a box and donated the contents.  I mopped my floor.  I played a card game with my sons.  And this morning I snuggled Henry in my armchair, cuddling him for a good ten minutes longer than was strictly safe for getting him to school on time.

One day at a time.  One step forward, then another.

Coping With Loss

CW:  miscarriage, child loss 

Tragic and unsettling events drive me to write.  I love writing--really, I do--but it seems like life gets so busy that I don't think about making time for it.  And then life knocks me sideways, and I suddenly have to make sense of everything by writing it down.

For those who don't already know, early Tuesday morning I had a miscarriage--my second.  The first was nine years ago.  I hadn't actually planned to get pregnant.  I had the Paragard IUD, which had been working beautifully for a little over eight years.  Apparently over time it migrated to my cervical canal, leaving my uterus wide open for a resident.  January 19 I took a test and confirmed that I was, in fact, pregnant.

Unplanned is not the same as unwanted.  As unexpected as the news was, we greeted it with joy, and started looking at baby clothes and furniture.  We kept it quiet, remembering the last pregnancy.  Family and close friends soon found out, because we couldn't hide my terrible morning sickness.  We checked in often with my obstetrician and had three ultrasounds within six weeks, to make sure everything was going well.

Monday morning I had very light spotting.  It had happened once before and turned out to be nothing serious, so I figured I would wait and talk to my doctor at our appointment Wednesday.  Monday evening it was just a little more.  Only a little.  But I felt sharp cramping in my lower back.  I lay down and stayed there for hours, whimpering with the pain.

Matthew works swing shift, and he got home about 2:00 in the morning.  He ate dinner, and got in the shower about 3:30.  He had barely been in a few minutes when I felt something shift inside me.  The pain lessened and I felt blood flow out of my body.  I called Matthew and said, "I need you out here RIGHT NOW."

Matthew called 911 and I called my mom.  I don't need to describe the ambulance ride or the hospital.  I can say with complete honesty that the EMTs and the hospital staff were all so lovely, warm and kind.  I am so, so incredibly thankful for medical professionals who show such care to their patients.  They asked if I wanted to see my baby, and this time I said yes.  They had laid my baby in a soft, satiny purple box with a white ribbon.  I saw perfectly formed little arms and legs.  Only twelve weeks along, so I don't know if it was a boy or a girl, but that didn't matter.  It gave closure, and a sense of reality, that I hadn't just imagined being pregnant.

I'm doing okay.  My best friend came to stay about two weeks ago, to take care of my children while I spent my time vomiting and lying down.  Now she's staying to help through the recovery.  My lovely family and friends have offered to bring meals.  One plans to take my boys out tomorrow morning.

As for how I am emotionally?  That's hard to say.  Grief takes many forms.  It looks like holding each other and sobbing in the exam room.  It looks like lying back to back in bed, feeling each other's solid warmth, while we each scroll through Facebook.  Like holding my living children extra tight and playing board games with them, even when I'm tired.  Like going to Walmart with my bestie, just to get out of the house.  Like sleeping for hours in the afternoon.  Like laughing hysterically at memes because laughing lifts my spirit.  Like praying in the dark and asking God to take care of my baby.

It's not common to post about miscarriages.  I wonder, even now, if I should actually post this.  But I want people to know that it happens.  It's a real hurt, a real wound for families.  For those who have experienced this pain, you are not alone.  I am there with you, and if you ever need to talk, I'm here.  You don't have to walk that path on your own.

Love to you all.

My Dad

Life has been rough lately.  There's no easy way to say it, so I'll just put it out there:  My dad is dying.  He's had Parkinson's for 20-ish years or so, and now he's getting toward the end.  His body is giving out and his soul is getting ready to move into his new heavenly home.

Last Friday a nurse said she thought he had only a week left.  We dropped everything and I took Rowan and Henry to see him, just in case we didn't have another chance.  I had already talked to Rowan a few weeks prior to let him know that Grandpa was nearing the end of his life, but I had put off talking to Henry.  How does one explain the concept of death--real death, without respawning--to a child?  Any child, but especially one whose communication skills and comprehension are limited?

Rowan took it in much the same way I did--with calm acceptance, keeping personal thoughts and feelings to himself.  Death is a part of life, and we all will die someday.  My dad has lived a full and rich life.  He has nothing to regret.

Henry looked confused, then uncomfortable, and then really upset.  He couldn't find the words to verbalize his upset, which might have relieved his feelings a little.  He didn't cry.  He probably won't.  But he saw Grandpa lying there so still and quiet, struggling to open his eyes.  He hugged Grandpa and didn't get a hug in return, because my dad was too weak to lift his arms.  He can see the difference, even if he doesn't know how to talk about it.

In the days since then, my dad has improved again.  He's eating, opening his eyes, smiling at people.  We have more time.  But we don't know exactly how much.  I tend toward realistic pragmatism, and I didn't think I was affected too much by everything happening.  I haven't wept at his bedside.  I'm not lying awake crying at night.

But I've been short-tempered with my children.  I've been sleeping in, unwilling to face the 8:00 a.m. classes with Henry.  I told Matt that this year, of all years, we are Absolutely Getting A Full-Size Christmas Tree, not a miniature, even though I don't know where we'll put it.

My dad is the best man I have ever known.  I hope I can bring up my boys to be like him.

Dealing with Failure

 Oh wow, you guys.  It's been almost two years since I last posted here.  I didn't realize I'd neglected it for so long.  I'm sorry.

I've been dealing a lot with feelings of failure--as a mom, a wife, a sister, a daughter, and a writer.  As a housekeeper, a cook, a reader.  As a special needs parent.  The list could go on forever, right?

But I'm also learning (slowly) to love myself, to accept that while I try to keep moving forward, here is where I am right now, and that's okay.  Because I am here, and that's a good thing, and a wonderful thing.  I didn't always know I'd make it to this point.  While I've never had suicidal thoughts, I have many times thought how nice it would be to just fall asleep and never wake up again, never have to deal with all the stressful aspects of life.

I'll delve more into that later.

Henry.  Remember him?  He's eight now, almost nine, and growing so tall.  He actually talks to me sometimes, real sentences that he's constructed himself instead of parroting.  He has come so far, and I am so proud of him--most days.  Some days I have to remind myself sternly that he is 8 and autistic and developmentally delayed. On those days is when I most feel like a failure, because shouldn't I always be proud and happy and understanding?

Sometimes it feels like there's a bit of competition in the special needs parenting community.  "MY child has xyz syndrome and it's SO difficult, but he can read Harry Potter in Latin and he's already mastered calculus."  That might be a little exaggerated, but some days it really feels like it.  Especially with distance learning--when I heard that schools wouldn't have in-person learning for the fall (at least), I went into despair.  Henry's SPED team is so wonderful, and there are so many people with qualifications that I just don't have.  I don't mean that parents can't teach; of course we can.  But with special needs, there has been so much research, people get so much training, and there are so many resources available.  Having a team makes it all so much easier.

He's adapted, of course.  We all have.  But it's also given me a glimpse into the classroom, as it were, when he has his live sessions.  When I see other children so bright and eager, sitting calmly in their chairs, doing all the activities, participating in discussion, and then I see Henry upside down in his chair, or slouched down with his hands in his pants, or running away out the front door--well.  It's not much of a confidence boost.

But sometimes I get a little hope that maybe I'm doing something right.  Two days ago I set Henry to do his math homework on his Chromebook while I helped Rowan (11) with his work.  Henry excels in math, and I figured he'd be alright.  Ten minutes later I glanced over and saw that the Chromebook was closed, and Henry was nowhere in sight.  I called, then called again, and Henry finally appeared.  I said, "Did you finish your math? Are you ready for Minecraft time?"

That was when he started sobbing.  I couldn't figure out what was wrong.  Low verbal really makes it challenging.  Was he hurt?  Was he sad?  He wouldn't stop, just kept crying and crying while occasionally gasping, "I can't."  Finally I moved him to my bed and had Rowan bring his Chromebook there, so I could still help Rowan while consoling Henry.  The tears stopped at last.  I said something about a Chromebook (referring to Rowan's) and the flood of tears began anew.  "Mama, I can't look at my Chromebook right now."

Aha.  Finally, a lightbulb.  I asked, "Did you make a mistake on your math?"  The tears poured down as he flung himself dramatically backward, buried his face in a pillow, and wailed, "I'm dead."

Sometimes it's hard not to chuckle at things that, from an adult's perspective, are so minor; and yet, from a child's perspective, are earth-shattering.  I let it go at that for the night; I figured some rest and time would help.  I didn't tackle it yesterday, either.  But today I sat down with him and said that we would be finishing that math lesson.

Oh, he did not like that!  He bolted; I grabbed him.  He grabbed my hands; I opened the browser anyway.  He slumped to the floor; I parked him on my lap and held him upright with one arm, while using the other to open the lesson.  The system his school uses allows students to pick up where they left off or start over from the beginning.  I figured starting from the beginning would be easiest for him, since it would be a clean slate.

But oh!  While it did take us back to the beginning, his answers were still there.  He could change them, but he realized that he--and I--would see his mistake.  He cried and begged, said he was "just too tired," that he wasn't feeling well, etc.  He tried dramatic Minecraft deaths.  I ruthlessly continued page by page until we got to the dreaded one.  They've been practicing rounding numbers, and he had accidentally hit "round up" instead of "round down."  As soon as we clicked onto the page, he shrieked, "Change it to round down!!!!"

I did.  He cried.  I hugged him.  Then I wiped his nose and dried his tears, and we continued to the next section.  By the end of the lesson he was smiling again, although he verbally confirmed every answer with me at least five times before marking it on the computer.  I told him that it's okay to make mistakes, that everyone does, and that it takes courage to go back and fix mistakes.  I don't know if that stuck in his head, but he should at least know that Mama will always be there to walk him through those mistakes.

And honestly, whether we're eight or eighty-eight, it's good to know that sometimes you just need to go back in and make it right, and then the weights can fall off our shoulders and the sun starts shining again.  And sometimes that's all it takes.

The Protestors

I first became aware of their existence while fighting downtown traffic just after 5:00.  That’s not really the best time to face Marion Street; it might not be Portland traffic, but it’s bad enough.  The traffic stacks up for blocks and blocks.  A light will turn green and the line of cars might not even shift.  Everyone jockeys for their spot on the bridge and free-flowing traffic – unless you’re heading to West Salem.  Then the misery just continues.

Rowan (9) and Henry (6) sat behind me, happily playing with their Burger King toys.  The deal right now is these blobby-looking plastic things that remind me of the Pillsbury Doughboy.  But get this – they come with playdoh and are designed with spaghetti squeezers and accessories to make cool impressions.  It’s actually pretty sweet.

Back to the van.  We slowly oozed along the road, hoping stoplights would stay green long enough for the cars in front of me to move out of the way so I could cross the intersection, when I saw a man hurrying along carrying a sign under his arm.  From what I could see, I think the sign read, “PRESIDENT not GOD.”  I looked around for other people, but saw none.

Two blocks away from the bridge, I spotted them.  They thronged on both sides of the street, all corners of the intersection at the bridge, so many people, waving their signs high in the air.  My initial reaction was apprehension.  I envisioned people running out and blocking traffic, rocks being thrown, general mayhem and possible violence.  I pictured struggling to keep my autistic children calm while simultaneously trying to get them to safety.

There was none of that.

The throngs respectfully kept their distance on the sidewalk.  Occasionally a car would honk in support and everyone would cheer.  Nothing was thrown.  No one got in our faces.  It occurred to me that while there certainly are violent protests, I shouldn’t automatically assume that every protest is the same.

Rowan asked me what all the people were doing, which led to a beautiful talk about our country’s founding principles, one of which is the freedom to speak.  We have the freedom to stand on street corners and wave signs.  We can criticize our government loudly and publicly.  We can make our voices heard and demand change.  Whether or not I agree with these particular protestors is not the issue.  Everyone here has the right to make their voice heard.

I told Rowan that not all countries have it this way.  Some countries will put their citizens in jail for speaking out.  They can’t say anything bad about those in power.  Rowan asked if some are even killed, and I said, yes they are.  While no government ever likes to be criticized, here we are still free to do so.  I am extremely thankful for that.

Rowan pondered this all.  I reminded myself that every moment can be a teaching moment for my children.  Every inconvenience can be turned into something more.  My children are always watching what I do, what other adults around them do.  They see and they learn.  They will model my behavior and my words.  Rowan understands that even when people have different perspectives, kindness and listening will go a long way.  And I was reminded that for my children to grow up showing kindness and understanding, they must first see that behavior in me.

It’s Not About the Men

I’ve waited a long time to write this post.  By now, most of the noise and clamor of Believe Her/Believe Him has died down.  That’s the way it usually goes.  My mind ponders a subject, goes over it again and again, editing and rewriting without it ever getting on paper, desperate to have Just The Right Words that will have Just The Right Impact.  Even when I’m finally ready to commit my words to the screen where everyone can see them, I still second-guess myself.

But it’s been long enough, and some things need to be said, even when I haven’t achieved perfection with them.  If I don’t put my own words out there, if I only repost what others have written (no matter how eloquently), people can believe that I am only a Bandwagon Jumper, New To The Scene, and Not Really Passionate About The Subject.

The reality is, I don’t always like to share my heart online, and some subjects can be very painful for some people to read.  I don’t like to share my friends’ stories without asking.  I did ask, and receive permission, to share a few.

First, I need to get the obvious obligations out of the way.  I know men have problems.  I know men get assaulted.  I know some men are raped.  I know men are murdered.  No one is saying that these things don’t happen to men.  Of course they do.  We live in a world that can be shitty at times – a lot of the time, in fact.  Men have to be aware of dark alleys and lonely streets.  Men have to be aware of their surroundings.

THIS POST IS NOT ABOUT THE MEN.

This is for Janessa*, whose husband raped and beat her on multiple occasions.  She was told that because they were married, it wasn’t really rape.  Even the police ignored her cries for help.

This is for Amelia*, whose boyfriend raped her.  When she told a parent, that parent said that because it was her boyfriend, it wasn’t really rape.

This is for Nenia*, who was propositioned by someone she trusted.  When she said no, he stalked her for two years.

There are more stories, so many more.  I haven’t received permission to share them all.  It hurts to be reminded of times when trust has been betrayed.

For millennia, women have been suppressed, oppressed, trodden down, beaten, raped, and generally subjected to restrictions that no one would dream of applying to men.  Here in America, we are so blessed, so fortunate to not live through such atrocities where CHILDREN sold as wives is a common occurrence, where it it illegal for us to drive, where we can’t walk in public with our faces bared.  We are fortunate.  There will always be another place where other women have it so much worse.

There has never been a country where the women regularly rape the men without repercussion, where women can kill men for dishonoring the family by being raped, where men are not allowed to drive but women are, where women can vote but men can’t, where 10-year-old boys are sold as husbands to 80-year-old women, where men must cover their faces and bodies in public while women walk around uncovered, where it’s common for groups of large, strong women to chase and harass a lone man and demand sex because he’s wearing shorts and exposing his legs.  Flip it to the reverse, and those things happen to women every damn day.

Just because we’re not as bad as some countries, that doesn’t make the problems here go away.  We live in a culture where, if a woman is raped at a college party, the automatic response is, she shouldn’t have been there.  Okay, maybe it wasn’t smart, but SHE IS NOT AT FAULT.  The person at fault is the man who raped her.  If she hadn’t been there, he would have found someone else to rape.  The blame lies on the rapist.

No matter how aware and cautious men are, there’s a certain element lacking in basic, everyday interactions with everyday passersby:  fear.  Women (speaking in general here) have a constant hyper-awareness of every man they encounter.  We choose our words carefully.  Stroke the ego just enough so he doesn’t think we’re insulting him, but not so much that he thinks we’re flirting.  Know that on a date, if we let the man pay, he will probably expect – and might demand – sex.

Being beaten and mugged is horrible when it happens to anyone.  The thing is, men don’t usually have to worry about being raped into the bargain.  For men, although they might be injured, their most private areas are generally left intact.  For women, there is a very high chance of the assailant helping himself to her body as well as her money.  Very few rapists are actually arrested.  Even fewer actually are convicted.

Of course there are some instances of false reporting, but those instances are astronomically fewer than the number of rapists who walk free.  Women are shouted down, harassed, and questioned brutally if they even mention the assault.  No one wants to believe that “that nice guy” committed such an atrocity.  It’s easier to just say the woman is making it up or was asking for it.

No woman asks for rape.  No matter how inebriated, no matter how she’s dressed, no matter how friendly she was, that does not absolve the man of his behavior.  The blame for assault needs to be put where it belongs – on the assailant.  Every person is responsible for their own actions.



*These are real people and real stories.  Their names have been changed to protect privacy.  There are so many more stories I could share, but I won’t do that without permission from the owners of those stories.

Letting Go

As a parent, there inevitably comes a time when our children are ready to strike out on their own and be their own people.  For me, it’s happening much too quickly.

I have very clingy children.  They like to climb on me and smother me.  Even at ages 9 and 6, they still want to climb in bed with me at night.  They want to be snuggled to sleep.  They clamber on top of my head and rub my hair in my eyes.  They always say, “Mama, play with me!  Mama, watch this!  Mama, fix me a snack!  Mama, mama, mama!”



I do my best to meet their needs, but for years I have longed for just a bit of space to myself, some room to breathe, some time alone to think.  And suddenly, within the last few weeks, I have it.

I’m not ready.

We get to the playground at school in the morning, and instead of holding my hand and giving me a snuggle, Rowan (9) shouts a quick, “Love you, Mom!” and runs off to his classroom to dump his backpack, then heads off with his friends.  Henry (6) doesn’t hold my hand anymore, either.  He runs and skips and looks offended when I offer my hand.  When we get to his classroom, instead of me going in with him while he hangs up his backpack, he pushes firmly on my tummy when the door opens, to let me know that I am Not Welcome in his classroom.  This is his space, with his teachers and his friends.  Mommy isn’t needed there.

Oh, my heart.



I was talking this morning to Donna, one of the assistants in his special classroom.  She doesn’t see him much anymore, either, because he’s spending most of the day in the regular first grade classroom.  The fact that he is not just going there, but thriving and spending the majority of his days there, simply floors me.  There were many, many days and months and years when I doubted whether he could ever function in school at even a basic level.

Anyway, Donna and I were commiserating with each other about how Henry just doesn’t need us anymore, and she said, “Well, that’s really what our job is.  We provide as much and as little support as they need, and the ultimate goal is that they don’t need us anymore.”

Oh, that is so true, and it hurts!  Some part of me wants to cling to my little children forever, keep them snuggled up with me.  This morning Rowan opted to stay in his bed for ten extra minutes instead of having snuggle time with Mom in the rocking armchair.  And I love that he’s comfortable in his own bed, but my heart!

I know they still need me.  They still come to me for hugs and kisses and snuggles, to find their shoes, to fix their food.  There will always be a part of them that needs their mama.  But it is growing less every day, and while I am so glad and so thankful for their continued growth and development, I am not ready.

Back to School

Rowan (9) and Henry (6) went back to school today.  I thought briefly about taking pictures, but that thought was quickly driven out of my head when Henry went into full meltdown mode this morning.

It’s not that Henry doesn’t like school.  He really does.  He likes the structure, the activities, and the learning.  He loves his teacher, Mrs. A., and the two TAs who work with him the most, Donna and Sharon.  It’s just that he really, really enjoyed summer.

He loved waking up at 8:30 or 9:00, wandering into the dining room for cereal, then settling down to play Minecraft.  He loved lazy summer days spent outside in our backyard, driving trains over tree roots, throwing the ball for our dog, Lili, going to the river, and spontaneous visits to cousins or grandparents.

We’ve been trying to prep him for school the last few weeks.  He has always stubbornly responded with, “NO SCHOOL.”  Yeah, not happening, kid.  The staff at his school have many more tools in their toolbox than I do, to guide and teach through his autism.

So this morning he absolutely refused to wear any of his new clothes, despite them consisting of the same type of t-shirts and sweats he always wears.  I guess with everything else, it was just too much new  and scary.  We compromised at last with just a new t-shirt, and everything else old and familiar.  He’ll get used to them in time, I suppose.

There is a happy ending to this story.  When I picked him up, Sharon said that Henry had a GREAT day, and that his time in the regular first grade classroom [he bounces between the special ed room & the regular class] was “night and day” different from how he started in the regular kindergarten classroom last year.  He also got a candy for practicing safe body techniques all day, so that was great!

As for Rowan, while he wasn’t thrilled about going, he was excited to see his friends again.  He sits across from his friend C. and she offered to introduce him to all the kids he doesn’t know yet!  I got a running and jumping hug when he came out, and he told me that “today was the BEST school day I’ve ever had!”

In conclusion, I think we’re going to survive this year just fine.

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.