sssshhh. just listen.

Sometimes we don’t want the answer or the advice.  You just need to be willing to listen.  Quietly.

“One day, lamenting the fact that my hands were in so much pain I could not finish coloring a page in my snazzy new adult coloring book, I was met with this unsolicited advice:

My hands hurt, too, but I just take my time and if it takes me a week to color a page then it takes me a week.  Remember, it’s not the destination, it’s the journey. 

Cool story, bro, but you’re going to have to take your candy coated zen master bullshit elsewhere because I’m telling you my hands hurt.  I’m telling you that these hands used to wedge clay and spend hours at the pottery wheel without so much as a cramp or an ache.  Now, there are days that I can’t open a pickle jar.”

I Need To Tell You – I’m Sick and So Are You

Every family has their own stuff. Autism can be one.

I know several people who love someone on the spectrum, more than one of whom have other children in the house.  Their lives are a constant balancing act – meeting the unique needs of one child while measuring the impact life is having on everyone in the family.  Here is one mom’s reflections on how her neurotypical kids handle life with their brother.

“I saw a book on an autism page I follow, written by the sibling of an autistic child, about what it was like to be the sibling of an autistic child.  I didn’t read all the details – the book was targeted towards younger children.  But it got me wondering again what it’s like for Big Man and the Princess to be the brother and sister of Little Man.  How are they changed, how are they different from who they would be if not for autism being part of our daily world?”

What’s it like for them? | Three’s a Herd

three rounds on vaccines, autism, and Jenny McCarthy

Let’s get this out of the way right up front:  I’m a big believer in herd immunity.  Really big.  Huge.  A shout it from the mountaintops, hire a skywriter, put it on Broadway kind of believer.

I guess you could say I’m a fan.

Continue reading

why my shorts don’t fit and other adventures in medication

I’ve been working with my doctor for about a year now on my breathing.  To say it’s been a long, slow process would be a vast understatement.  Vast in a “the Grand Canyon is a pretty valley” sort of way.

But I’m hanging in there ‘cuz, you know, that whole pesky breathing thing.  It’s not like I can give it up for Lent.

Continue reading

SoCS – JR & the breathing room

Whoa, Nellie…it’s like Linda was in my head this week when she picked this prompt which, I have to admit, was just a little freaky.  No matter – at least I know exactly where to go from here.

I’ve been experiencing shortness of breath for a while, and this week I “enjoyed” (snarky font) participating in the Methacholine Challenge Test.  This is a fancy name for “very long breathing test to check lung function.”  Guess that name was already taken.

A real nice fella named JR met me at 8:00am to administer this.  Normally I’d be at least minimally responsive at that hour, but I’d had to leave home really early and wasn’t allowed to drink any caffeine before the test so I was in a bit of a fog.  (There may have been some quiet whimpering – “coffeeeee” – involved.)

Just a quick rundown.  For the test you breath in and out through a mouthpiece so the computer can record all sorts of medicalish numbers.  First you get a baseline, then you breathe in a dose of saline & repeat the test, then you start moving through the levels.  They put a dose of histamine (yep, the thing I fight with ANTI-histimines) in the system and pump oxygen through it so you can breathe it into your lungs.  Then they run two more breathing tests to check your lung capacity before increasing the methacholine dosage.  (There won’t be a test at the end of the post…all of this is just to say there’s a lot of breathing involved in this process.)

But to get to my point (about time!).  JR spends his days administering this thing.  He can only do two a day because they can last upwards of two hours or more – mine was a two hour stint – so there’s only so many patients he can see.

What I found truly impressive, though, was that he never once seemed bored or rote or mechanical while in the room with me.  Why is this impressive?  Because an extraordinarily large part of his role included verbal directions for me, such as:

Okay, we need nice steady breathing, in and out, in and out, in and out…perfect, keep that rhythm…in and out, in and out – now take a big breath in and PUSH IT OUT, push it out push it out push it out push it out, keep on going, keep going keep going keep going keep going keep going keep going – and breathe in.  Okay, take a break then we’ll go again.

So basically it was this, for almost two hours.  My saving grace (if you want to look at it that way) is that my numbers tanked before I completed all the doses.  There were three or four more levels I could have had to do if we hadn’t stopped, and let’s just say I’d had all the in and out I could take that morning.

You wouldn’t think of breathing as a difficult thing.  I never used to, anyway.  It came as naturally as…well…breathing.  So I guess that simile didn’t really work out, but you get my gist. Being able to breathe was always a given, so the fact that I have to strain to push all the air out of my lungs has been an adjustment.

Happy breathing, everyone!

SoCS 2

Linda’s weekly Stream of Consciousness prompt is open to one and all.  Click the link to check out its rules and participating blogs.  This week’s prompt was “in/out.”

Forever Family: handle with care

That adoption conference in Charlotte was like trying to drink from a waterfall, so much so that I’m still busy processing what we learned.  (You can check out my previous posts about holding space here and here.)  Today I’ll share a little more information about what Ms. Forbes calls the “Billys” of the world and how trauma influences them.

This information is culled from both the conference and one of Ms. Forbes’s books.  All page notations are in reference to the book.  See footnotes at bottom of post.

In Help for Billy, Heather Forbes describes two boys she calls Andy and Billy.  Andy’s mother experienced a happy pregnancy.  She had a supportive spouse and delivered a healthy full term baby.  When Andy cried as an infant, he was soothed and nurtured.  A parent stayed home with him for three years before slowly introducing Andy to the preschool environment.  He was given emotional space and encouraged to express his feelings, and by third grade Andy was an excellent student who was thriving academically (p.9).

Alternatively, Billy’s mother was furious about being pregnant because her partner had lied about being able to father a child.  She was forced to move in with this abusive boyfriend after her family kicked her out.  Billy was born four weeks premature, spent the first two weeks of his life in the NICU, then was placed in day care at six weeks of age so his mother could work.  She had difficulty keeping a job, forcing them to move frequently until Billy was five years old, and he had multiple caregivers during this time.  Billy’s mother was frustrated and did not have financial or emotional assistance, a situation that made her unresponsive to Billy’s needs at home.  His academic struggles began in kindergarten, and by third grade Billy had come to see school as a place of punishment and discipline (p.10).

Two third grade boys, both eight years old, but radically different when it came to how well they function in the school setting.  Ms. Forbes asserts it all boils down to one simple reason: trauma.

Continue reading

different right from the start

Tomorrow’s Forever Family is delving into more science: a biological explanation for why some of our kids are wound more tightly than others and the effect that has on their ability to function in the world.

I wish I’d had Help for Billy when I was teaching…it really does give you a new perspective on why students can react so differently to the same environment.  Visit RFTM tomorrow to discuss kids and stress tolerance.

…[Heather T. Forbes] isn’t just talking about school being more difficult for Billy because his life is hard; she contends the trauma affecting him dates all the way back to the womb.

When a pregnant woman is stressed (as Billy’s mother clearly was while he was in utero), her body produces elevated levels of cortisol, epinephrine, and norepinephrine.  These stress hormones constrict blood vessels, decreasing oxygen to the fetus, and negatively influence the fetus’ ability to develop (p.11).

Kids like Billy spend nine months baking in stress, exposure that causes long term effects on their nervous systems.  Being wired at elevated levels produces children who can have difficulty with problem solving, paying attention, or simply being able to sit still.  In other words, these kids enter the world already at a developmental disadvantage.

it’s not just a women’s issue

Women mourn their way through a miscarriage.  The men who love them mourn, too.

“I remember the winter night vividly.  Our unborn baby was dead.

Three days prior to Christmas 2009, my wife and I lost our baby.  I put on a brave face for my wife by saying everything will be OK, and I told my inner circle that we’ll dust ourselves off and try again – but privately I was a mess.”

It’s rare for dads to share their thoughts about miscarriages. This man did. – Upworthy