Looking for Book Recommendations

I love to read (have I mentioned that I am a Janeite already? ), and I love to share my faves.  I’d like to expand my list of faves, so please share your favorite reads - the books that help you balance the humor in this crazy life - the books that leave you inspired, feeling better about life and your place in it.

My top recomendation?  The Hiding Place by Corrie Ten Boom.  It is my all time favorite book and I have given out so many copies to friends over the years.  If you haven’t read - YOU MUST!!!  It is about a Dutch “elderly” spinster, living with her older sister and father, above their clock shop during World War II.  They participate in the resistance movement by hiding Jews in their home… well, I won’t share more or else I’d ruin the story for you.  It is an easy read and chock full of inspiration, charity, values, and heart.  I find something extraordinary in this book every time I read it.  The last time I read it it was with the perspective of a parent of a child with disabilities - and it helped my perspective develop in a better direction.

Please, share your faves with me in the comments - I’d love to find some new favorites!  Thank you, and peace to you all!

Ball Games, Peanuts, And Creative Packaging

We went to a Braves Game this last weekend.  I am not a huge baseball fan, but I can certainly appreciate spending a pleasant day in the stands, watching our team play a good game, chatting with friends, and enjoying the beautiful weather.  Oh yeah… and the food!  It just isn’t the same without the hot dogs and peanuts.  It is a wonderful American tradition.

Whenever I go to the ballpark and see those peanut shells I am reminded of a cute story from years ago.  One of my best friends has a boy the same age as my oldest.  We’d taken both families to see the Braves play.  The boys brought their gloves in the hopes of catching a fly ball.  We parents brought in a large bag of peanuts to share.  The boys practically dove into the bag, selecting their peanuts, then setting about the business of cracking them open (without spilling the nuts inside) and popping them into their mouths.  After the initial surge of nut popping activity, my friend’s son seemed to slow down a bit, pondering his peanuts as he twisted them open.  Then, after opening one and eating the nuts inside, he held the shell up for closer inspection.  He turned it around and around, then turned to his Mom.

“How do they do that?” he asked.

“How do they do what, Butterbean?” she replied.

“How do they make the little waffles and get them around the peanuts?” he said.

That makes me chuckle to this day.  Peace to you all!

A Dose Of Friendship

I’ve been sick the last few months.  Not one continuous illness, but a series of no less than seven colds since the first week of January, with some chest pains (lungs?  heart?  Dr.s are still running tests to figure this out) in between.  This has worn me out and obviously my immune system has been compromised in some way in order for this to have happened.  I’ve been so sick so often that my boss has taken to greeting me with a fond “Hi Sicko!” in the mornings when she sees me on-line.

This last cold was the worst.  I won’t go into the details, but last Monday morning I felt so horrible that I thought about asking my husband to write down the hymns I’d like sung at my funeral (which would, by the way, include “Just As I Am”, in case any of my family members read this).  My husband had me wrapped up papoose fashion in an electric blanket because I couldn’t stop shivering.  I couldn’t keep my eyes open long enough to watch much TV, and I couldn’t keep my mind clear enough to follow the plot in anything - even on The Price Is Right.  And yes, for those of you asking, you only realize there is a plot to The Price Is Right game show when you realize that you aren’t able to follow it any more.  It doesn’t hit you until later just how scary that is :).  And if this doesn’t paint a pathetic picture already, let me add one more detail that is the real “tell”…  My husband put in my DVD of Pride and Prejudice (the 1995 BBC version with Colin Firth, of course) in the hopes that this would entertain me… and I had no interest in anything having to do with Mr. Darcy.  I obviously had good reason to contemplate the musical score for my funeral.

That was earlier this week.  Now I am on the mend and today I actually sat at my desk and worked.  Hooray!  And what got me from funeral planning to planning out performance management strategies at work?  Three things.  First came the Z-pak antibiotic series - 5 days of pills that my Dr. prescribed for me Monday morning.  After three days however, I hadn’t improved much.   Unbeknownst to me stronger medicine was on its way.

The second thing came Wednesday when a friend of mine from church sent me an email saying that she missed me and wanting to know how I was.  None of my friends are the type to call every day and chat - most don’t even live in this state and we are all waaaaay too busy for casual daily contact.  Most of my friends weren’t even aware that I’ve been ill.  This one however is from my church and she knew I’ve missed some services and haven’t been singing in choir lately.  I wasn’t in services this last Sunday nor was I at a small group meeting Sunday night.  Even though neither my husband or I had reached out to tell anyone I was sick, this dear friend reached out to me.  Seems small, but it was a therapeutic touch that hit the spot. 

Then came the closer.  A woman in our neighborhood whose son is on the same little league team as my older son, who knew I’d missed more than half of the games this season (I’d missed again that Monday evening - first game of the end-of-season tournament), sent over a plate of home made cookies around dinner time Wednesday night.  Wow.  This completely unexpected gesture of kindness was a sweet balm that warmed my heart.

I hadn’t asked for it in any way.  Yet people missed me.  They cared.  God had opened his medicine cabinet and sent me some home remedy.

My cold made the turn that night.  The next morning I felt better and continued to improve throughout the day.  Today I feel even stronger.  I know the antibiotic was part of it… but the powerfully strong dose of friendship paired with the shot of kind sympathy was the best medicine indeed.

Thank you!

What is Dinah Doing?

You know how you can get song lyrics wrong?  You know how funny it is when someone else does it?  Take my younger son, who insisted that this little ditty was the “correct” set of lyrics to a section of the kiddy classic ”I’ve Been Working On The Railroad”… 

“I’ve been workin on a railroad, all the livin day!

I’ve been workin on a railroad, jus a bass a dime away!

Can ya hear a wiffle owin, aye uh a eary ih a born!

um a uh uh uh uh uh dah, Dinah bow ya born!

Dinah Warsh and Blow,

Dinah Warsh and Blow,

Di - nah Warsh and Blo - o - ow!”

Rather than working on the railroad, I think Dinah opened the west’s first Cut’n'Curl Beauty Salon… but that is a whole other post.  Peace to all out there!

A Budding Novelist

My youngest has had a school assignment to write a story.  This will, in a few weeks, be “published” in book form.  The little authors will have a class party where the parents are invited and the authors read their stories in front of everyone.

We’ll cross the reading-out-loud-in-front-of-everyone bridge when we get there.  We had to get through writing the story first.

Now let me make this clear up front.  My son has no problem making up stories.  He’s actually quite good at coming up with ideas and events to put in stories - quite an active imagination.  But we often are left wondering where he gets his, shall we call it, inspiration.  Sometimes his stories even ”inspire” questions from others about our home life - sometimes funny questions, sometimes not so funny.

We drafted his story this last week.  He would get going telling his story and I would type out his words.  I asked a few questions to get some more detail and we ended up with something like this…  There’s this Crocodile whose dinosaur friends are all dead, his parents are dead (this is where it turns into a Disney classic), he doesn’t know what to eat but does know what can eat him…  (okaaaay…)

He moves to a new lake where there are no Raccoons, Snakes, or Birds… and is trained on the Tuba and plays in victory parades.  (Tuba?  Where does this come from?  We don’t know anyone who plays the Tuba… Right after my younger son says this about the parade we have to shush our older son who tries to point out that crocodiles do not have the lip structure to play horn instruments.  After all, we tell him, we’re being creative.)

Eventually the Crocodile (whose name is actually “Crocodile” in case you were wondering) finds his parents (who aren’t dead after all, they just moved to a different lake - which turns this from a Disney movie to a twisted and dark commentary on child neglect, but thank God we’re… I mean they’re… still alive) and all live happily ever after.

I don’t want to change his story (although we did make some gentle suggestions), but I am curious as to what sort of looks we’ll get as my precious lovey (who, for the record, we cherish and love very much AND who we’ve never left at a lake, never starved, and always brought with us when we moved to a new house) reads his story to the rest of the class.  Should we expect a call from social services…

Or negotiate a contract with Disney?

Hide and Seek… and Thoughts of Divorce

My youngest son doesn’t answer to his name.

Or at least, now he only occasionally answers to his name.  We keep working on it.  It goes something like this:

Mommy is in the kitchen, washing dishes, while her son, X, is playing in the living room (she thinks).  Mommy looks up from her suds and notices that X does not appear to be in the living room.  She calls “X!” then listens.  No answer.  She calls again “X!” and cocks her head, straining to hear any movement, rustle of clothing, footsteps, anything to indicate that another living soul is in the house.  When she hears nothing, she checks behind furniture, the bathroom, then goes to the front door and calls again “X!”.  When nothing responds she goes to the back door and again calls “X!”  In a bit of a panic she runs out into the back yard and again calls “X! X!  Where are you?!?!”  The neighbors come out of their houses (Mommy has a good set of pipes on her - she could signal in fishing boats in a dense fog) and offer to help look for X.  Mommy goes back into the house and, a bit shaky at this point, calls one more time “X!  X!  What do you do when Mommy calls ‘X!’?”

“Here I am Mommy,” he calmly says while crawling out from behind the sofa.

Now - I know there are smug parents out there thinking “Why doesn’t this Dodo-brain just say “X!”   “X!”  “What do you say when Mommy calls X?” the first time?  You see… this would make sense.  But remember… this is AutismWorld we’re talking about - where rules are changing and the only consistency is inconsistency (it is a game that will likely not be marketed by Hasbro or Mattel anytime soon).  Apparently we first must call and call his name repeatedly, then ask “What do you say when Mommy calls X?” (requirement is that this phrase is usually only valid when we begin to sound hysterical) before he will respond to this latter phrase.  

This was recently tested during a holiday shopping trip to WalMart where first my husband disappeared somewhere around the pharmacy section (without alerting me as to where he was going), then my older son wandered off near the bike rack (”Stay in this section or come to us in Toys when you’re done,” I told him), and then my Autistic son disappeared while I was checking in what country the supposedly lead-free toys were made.  I started calling out his name.  And let me tell you, after the first unanswered calls - those “pipes” kicked in.  “X!  X!  What do you say when Mommy calls X?” 

My older son came running.  Five other Mommies offered to help us find my younger son.  After 5 minutes of searching the management shut the store exits down (my apologies to the WalMart shoppers out there).  The tears started to spill down my cheeks as true panic kicked in.  We jogged down aisles calling “X!  X!  What do you do when Mommy calls ‘X!’?”  Employees checked restrooms.  Pages flew across the rafters.  And then, another 10 minutes later, an employee ran up to me and said “I think we found him!” She led me to an aisle where my son was happily sitting in a corner next to some paint rollers (one aisle away from the toy section).  He looked up and said “Here I am, Mommy!”  I held him until my shaking stopped.  After a while, we stood up and started to walk toward the exit - all thoughts of Christmas shopping having fled.  That’s when my husband strolled up.  “We found him!” I said with a weak grin.  “Oh, that was you that caused that ruckus?” he asked.

No wonder there is such a high divorce rate in AutismWorld.

My son’s behavior reminds me of one of those funny stories that circulates occasionally on the internet.  I’ve copied it below for you:

Why Parents Drink:
The boss wondered why one of his most valued employees had not phoned in sick one day. Having an urgent problem with one of the main computers, he dialed the employee’s home phone number and was greeted with a child’s whisper.
“Hello”
“Is your daddy home ?” he asked
“Yes”, whispered the small voice
“May I speak with him?”
The child whispered, “No”
Suprised and wanting to talk with an adult, the boss asked, “Is your Mommy there?”
“Yes”
“May I speak with her?” Again the small boice whispered, “No”
Hoping there was someone with whom he could leave a message, the boss asked,
“Is anyone else there?” “Yes”, whispered the child, “a policeman”
“May I speak with the policeman?” “No, he’s busy” whispered the child
“Busy doing what?” “Talking to Daddy and Mommy and the Fireman” came the whispered voice.
Growing more worried as he heard a loud noise in the background through the ear piece on the phone, the boss asked, “What is that noise?” “A helicopter”, answered the whispering voice.
“What is going on there?” demanded the boss, now truly apprehensive.
Again, whispering, the child answered, “The search team just landed a helicopter.”
Alarmed, concerned and a little frustrated the boss asked, “What are they searching for?”
Still whispering, the young voice replied with a giggle, “ME”

Peace to you all, and may you always find what you’re looking for!

Advice for Parents

I recently joined an on-line group called FoggyRock.   Their tag-line is ”When autism is your mountain, you will never have to climb alone”.  What a great tag-line! (check out the link in the sidebar)

Within FoggyRock, I joined a group for people in my state, and saw a question posted.  Basically it was asking what one piece of advice would parents of children with Autism give to a parent for a child newly diagnosed.

WOW!  What a question.   What a really difficult question.  One piece?  Just one piece?  I thought long and hard about that one.  What could I offer?  What did I wish someone would have told me when we first started on this journey?  What advice has most helped me over the years?

And I found I couldn’t think of one thing that would be the most important thing for all people.  I figured each parent comes from their own unique place, and with so many differences between kids (and all of the inconsistencies within each kid), differences between families, differences between support structures available, and differences between diagnoses, there can not be one thing that will be most helpful for everyone.  But… maybe this person was asking for one thing because, like most of us, they felt overwhelmed with the diagnosis and wanted desperately to prioritize.

I get that.  I remember that.

So what would I offer?  Some of the gems in my treasure chest would include “allow yourself to grieve because this is a normal response and it will help you eventually move toward acceptance” and “get moving on intervention as early as you possibly can - don’t wait for a cure to be announced” and “accept offers to babysit because you need it” and “Valium can be your friend” but when it comes down to it, there were really two things that I wanted most to tell parents and anyone who loves a person who has been diagnosed.  These two things are the most important and influential pieces of advice I wish someone had told me way back when.  They are validating, they are constructive, and they are, in my opinion, liberating.

Most important advice #1 -

Don’t sacrifice your entire life or your family’s life to the Autism beast.  You MUST take care of yourself - it is actually OK to take a break and do something that has nothing to do with Autism once in a while.  You also need to not let the beast make all your family’s decisions.  Make decisions in the context of the family (whether that is just you and your child or includes a spouse, other children, grandparents, etc.). You only have x number of resources for your family (money, food, time, car, energy, etc.) and you have to figure out how to budget that out across the entire family - so every person gets a reasonable amount of resources depending upon what they need and what you have to give and relative to what the others need. I see so many families sacrifice the marriage or sacrifice other kids so that they can throw all of their resources at fighting the Autism beast. And while they may make great progress against the beast, I am not sure (in some cases) it was worth what they sacrificed. That is not to say that we shouldn’t make sacrifices - we all have to make sacrifices, just that priorities need to be set in favor of the family, rather than just the child with the disability. 

There are so many approaches and therapies - I cannot try them all and some are cost-prohibitive to even try much less sustain. So I try to think of it along the lines of a resource budget - it helps me feel less guilty about diverting a resource to pay for my other child’s baseball league or my church fund raiser and helps us live a (slightly) more balanced life than we are tempted to live when we live with Autism.

Most important advice #2 -

Guilt - No one should let themselves feel guilty because they may have “done something wrong” in pregnancy or they think they followed poor advice or because they didn’t know something earlier, or they aren’t adopting the latest x therapy/drug/treatment, etc etc etc.  We can destroy our lives this way and it just isn’t healthy.  We are human.  Whatever your religious convictions (or not) we are not created (or randomly born, whatever) as perfect beings.  We’re just not.  We’re not mind-readers, we’re not infallible, and while some of us specialize in certain skills (like Drs or therapists) none of us can be all things that our child needs.  It is just impossible, so we need to not hold ourselves up to an impossible standard.  We just do the best we can in this crazy, confusing, inconsistent world.  So my advice is to cut yourself some slack and just take it day by day.  Do the best you can but don’t beat yourself up for not getting it right every time, every day. 

And - don’t feel guilty about feeling guilty once in a while, either.  You are human (remember that?) and this is normal, too.  Just do your best to not wallow in it.  Try again tomorrow and work with what you’ve got!

Peace to all out there!