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!

What’s In A Name?

A few years ago my youngest was learning his letters.  One of his teachers taught him that the Xs represented a kiss.  When he came home and told me about this, I taught him that the Os stood for hugs.  He was tickled with this information and made sure that his Daddy learned this vital information as well.

Months later he learned to write his name.  He came home that day and announced that he had a hug AND a kiss in his name.  He held up a school paper to show me just what he meant.  He showed me the X and kissed it.  He pointed out the O and then hugged the paper.  He was so proud.  “I am the only one with both a hug and a kiss in my name!!!” he crowed.

On this Mother’s Day, my youngest crawled into bed with me and handed me a card.  Inside he had signed his name and drew several Xs and Os beneath.  He had me kiss each X and hug each O, including those in his name, then he gave me a hug and kiss for each as well.  My heart swelled.

My sweet baby, my darling son.  True to his name, he is full of Xs and Os… and blessings every day.

Crazy Elephant Stories

My younger son receives Occupational Therapy (OT) in school each week.  He has alot of sensory issues, gross and fine motor skills to develop, and of course tons of energy.  His school OT is a good professional and very creative.  She makes him work hard too - which he doesn’t always appreciate .

At the last IEP meeting, the OT tells us the following story…

The OT, in preparation for our son’s session, “messes up” her room, turning chairs over, moving desks, taking books off the shelves and putting them on the floor.  She does this so that she can ask our son to put everything back when he first gets to the room.  This gives him some deeper sensory stimulation and helps him calm and focus himself for the work ahead.

Our son, walking into the room, says “What happened!  Why is the room so messy?”

The OT tells him that an elephant came through the room and moved all sorts of things around - she needs his help to clean up.  Our son, suspicious that an elephant didn’t reallycome through her room, but willing to play along, gives her a look and then starts to put things back where they belong.  After half-a-minute he stops, cocks his head, and says “I have something to tell you about the elephant and how he came to school to mess up your room.”  Clearly he has concocted a story to help explain this strange occurance.

The OT, wise to my son’s story telling stalling techniques, tells him that now is not the time to tell stories, now is the time to work.  My son tries again with no success.  Eventually the room is put back to rights and they begin a more traditional exercise.  My son is a bit perturbed but settles in.

At the end of the session my son is preparing to leave the room to go back to his regular classroom when he turns at the door.  “I want to tell you a story,” he tries again.  He is determined to tell a story!

“What about?” she asks.

He pauses for dramatic effect then raises his eyebrows.  “About the CRAZYOT,” and placing hand on hip he grins and says “and YOU are the OT!”  Satisfied that he has made his point he flounces out of the room (as best as a first grade boy can flounce) and makes his way back to his classroom.  At this point in the story we all laugh, shake our heads, and agree that our son has quite a personality and flair for the dramatic.

Thank you to all of the crazy OTs and STs and PTs who work with our crazy kids and us crazy parents.  We couldn’t get through this without you.  Thanks for pushing us a little farther so that we can all achieve our best - especially when the elephants charge through our lives.

Hallmark Untaps New Market? - Autism Greeting Cards

Ever walk through the greeting card section in your local mega mart and wonder…  With Autism diagnosis rates increasing, could there be a new angle for the greeting card industry?  Shouldn’t there be greeting cards to reflect this significant part of our lives?

Sympathy cards: I’m so sorry your child was just diagnosed with autism…

I Love You: I love you, Mom, even though I’ve never been able to tell you in words…

Anniversary cards: It’s been a heckofa year since your child was first diagnosed…

New Year’s cards:

- Another year, and your kid is still autistic???…

- Another year, and your kid still isn’t potty trained???…

IEP Thank you cards: Thank you for all of the double-talk, confusion, and aggravation from our last IEP meeting…

Congratulations cards:

- Now that you’ve spent your life savings on therapies and are entering bankruptcy we didn’t want this important milestone to pass without saying congratulations on destroying your credit rating…

- Congratulations on sleeping through the night!

Thinking of you cards: I know you never get to go out with your friends anymore, but we’ve been thinking of you and wish you were here…

Extreme Makeover cards: You and your life are so totally different now that you have a child with Autism… what a makeover!

Alas, none of these would take away the pain that comes with a diagnosis, but I sure could use these once in a while!  What other ideas are there for a new line of greeting cards?

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!

Spring Break Musings 2

While on spring break on St Simon’s Island, we took to the beach one night to search out the sand crabs.  The two adults in our party who had grown up on the island swore that after the sun went down we would see so many crabs on the beach at high tide - we just needed to take a big flash light so we could see the crabs in the dark and avoid stepping on them.  We thought the kids would love it.

We strolled along the beach, sweeping the light to and fro, searching for the elusive crabs.  We kept walking… and walking… and walking.

“Where are the crabs?” one little girl cried.  “Why can’t we find the crabs?” whined one of my sons.  “Where are the @#% crabs?” asked a parent.

“I thought you said there would be hundreds of crabs out here,” a wife said to her used-to-be-an-islander husband.

“There are, there are, we just haven’t gotten to them yet,” he said.  The rest of us adults just rolled our eyes in the dark and kept walking while the children jumped and leapt with excitement.

Further on, one of the “former residents” stopped the light on a dark mass (which turned out to be a piece of wood) and the children huddled around it.  Out of the corner of my eye I spied something to the side of the crowd… could it be?  I stared hard, willing my eyes to sharpen their focus in the dark.  “Hey!  Over here.  I think I found a crab.”  They shone the light on my discovery and sure enough, it was a CRAB!  The children danced and the adults high-fived while one gingerly picked up the crab and put him in a large beach bag (we released him at the end of our walk).  We whooped and hollered (as us Southerners do when thrilled with life in general) and exulted in our success the rest of our walk.  We likely scared off all other crab wildlife (although we found a dead horseshoe crab, but being dead he didn’t seem to mind our noisemaking) as we didn’t see nary a one after that.

My children were so proud that THEIR mommy was the celebrated crab finder, that they felt the need to tell all others we encoutered the good news. 

My youngest shouted “My Mommy got crabs!” in the condo courtyard as we made our way back from the beach.  Some whooping and hollering came back in response from the late-night revelers on their balconies.

My husband, trying to cover his laughter, told my younger son that we should say instead “Mommy found a crab on the beach,” as this was more correct.  He told my older son that saying “Mommy had crabs,” wasn’t a nice thing to say - he would explain later.

We left our friends at their condo and I felt secure that the proud announcements and strange looks were over.  I was wrong.

The next morning at breakfast my younger son told his Grandma (who didn’t come with us on our beach adventure) that Mommy was on the beach and got crabs and that Daddy was trying to hush him because it wasn’t nice to say but that he thought it was really cool that Mommy had crabs.  He ignored our efforts to shush him as he proudly offered this up to his Grandma.  Once finished with his proclamation he beamed at me, pride spilling over in his eyes.

My mother-in-law raised an eyebrow and gave me a look as if to say “I suspected as much all along, missy.”

Spring Break Musings

During our kids’ spring break we went to St Simon’s Island.  While there we journeyed to Jekyl Island to visit the Sea Turtle Center.  It was fantastic - I highly recommend!

Fortunately for all of us, there are some wonderful (and very patient) volunteers at the center.  Want to know just how wonderful?  Well… they graciously put up with the following from my two precious boys…

Scene: I am paying for our admission while the volunteer selects passbooks for us. 

My younger son says to the volunteer “Your teeth look really really bad!”

My older son says to his little brother “You can’t say that to her!  She can’t help it.  She’s just really old!”

So proud.

Acronyms and JACK

If you are a parent of a child with a disability, you probably participate in a number of on-line discussion groups, email lists, etc.  If so, then you probably have seen parents sign their emails with a list of their children’s diagnoses… often in the form of acronyms.  With some of these kids’ complex medical conditions and learning disabilities, it can look like alphabet soup in the signature!  In fact these many acronyms get to be so familiar - like our own little special needs language where vowels are rare but consonants abound… but I digress.

One parent recently shared a funny story…  On one of these lists, some time ago, there was a parent who had three children.  Two of her children had several dx (a.k.a. diagnoses) and one was what we call NT (a.k.a. neurotypical).  So her signatures looked something like this:

“Beth, proud mom of:

Simon - ADHD, CHD, DS, NLD, DD, HI

and Jordan - HFA, SI, SLD, IBD, OCD”

(Which, BTW translates to “Beth is an amazing mom of Simon who has Attention Deficit Hyperactivity Disorder,  Congenital Heart Disease, Downs Syndrome, Nonverbal Learning Disorder, Developmental Delay, and is Hearing Impaired and of Jordan, who has High Functioning Autism, Sensory Integration Dysfunction, Specific Learning Disability, Irritable Bowel Syndrome, and Obsessive Compulsive Disorder)

To take it even further, some parents even include the acronyms of the various therapies and assistive devises they use to help their child, but I won’t give an example here since that would just be waaaayyy too much fun.  So anyway, back to my story…

This mom of three had an NT son as well and so, one day, she included in her signature a fourth line that read “and Robert - JACK” 

JACK?  No one had ever heard of that one before.  Was this some new exotic disease?  The parents just had to ask her what this new diagnosis acronym was.

She responded that her NT son felt left out when he saw these signatures and wanted his name on the signature too.  So she gave him her own diagnosis acronym: J. A. C. K. = Just a cute kid!!!

You can imagine the conversation that ensued in that discussion group.

To all those with JACKs and with the whole alphabet soup in their signatures - Peace to you all!!!

My Unfavorite Things

Here’s a song by Jessadriel Darkmountain (to the tune of “My Favorite
Things” from the Sound of Music):

My Unfavorite Things

Bright clashing colors, machines that keep beeping,
Phones and alarm clocks that ring when I’m sleeping,
Getting told off when I’m scattered or late,
These are a few of the things that I hate. Tags in my clothing and seams in my stocking,
Those who say “teasing” when really it’s “mocking”,
Fluorescent flicker and noises that grate:
These are a few of the things that I hate.

Too many people in too small a room,
Vile reeking chemicals mis-named “perfume”,
Voices too loud and weird food on my plate,
These are a few of the things that I hate.

Being expected to follow the fashions,
Not being able to share my true passions,
People who bitch when I perseverate,
These are a few of the things that I hate.

Indirect questions and vague explanations,
Having to smile when I’m losing my patience,
Looks of disdain if I stim while I wait,
These are a few of the things that I hate.

When my hands flap, when my voice fails,
When I’m meltdown-mad,
I simply remember - I could be NT (ack!) -
And then I don’t feel so bad!

© 2/10/04 Jessadriel Darkmountain

(Per Jessadriel: “Feel free to send it around wherever you wish, as
long as my name stays on it.”)

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!