learning to live and love from a new perspective

Archive for January, 2014

Tissue Mission

This morning, I dropped my kids off at school.  I said good-bye to the back of S’s head as she wove through the crowded hallway towards her classroom.  Then, I walked G down to his classroom.  We went through the routine of swapping boots for sneakers, hanging up his coat, putting his lunchbox in his cubby.  We say good-bye, and I walk back towards the main hallway.  My brain is filled with the familiar thoughts.  I hope he has a good day.  I hope his day proceeds smoothly, without any bumps in the road that might send him into a tantrum or meltdown.  I hope he participates.  I hope he feels included.  I hope he greets me at the end of the day with a smile on his face, saying, “I had another great day in kindergarten!”

 

I wish I didn’t worry so much.  G loves kindergarten.  In my eyes, his teacher is nothing less than an angel placed on Earth to create an environment where, year after year, a new crop of wide-eyed five year olds can flourish into full-fledged, confident elementary school students.  I also know that no matter how hard I try to think of everything, and no matter how warm and loving the teacher is, there will always be bumps in the road.  There will always be unanticipated turn-of-events:  a missing glove, a juice box that won’t open, a math lesson cut short before G gets his turn to participate.  As hard as it is to watch G have meltdowns and struggle through these unexpected incidents, I know that these are exactly the struggles that help him grow.  With each unexpected event, he learns to cope.  He learns he can cope.  My glove is missing.  My juice box won’t open.  I didn’t get a turn today.  But I’m okay.  I’ll find the glove later.  I’ll ask for help opening the juice box.  I’ll get a turn tomorrow.  I’m okay.

 

I’m still lost in these thoughts when I reach the hall that leads to the front entrance.  I stop for a moment to exchange a few words with the principal, who is standing in the hallway, greeting students and parents as they enter the building.

 

While I’m talking to the principal, my gaze wanders to the little window to the main office.   I catch a glimpse of a bright red shirt.  Wasn’t G wearing a shirt that color today?  Wait, it is G.  What’s he doing in the office?  And, almost more important, how did he get in there?  I was pretty engaged in the conversation with the principal…  but how did G walk right past me without me noticing?  If he had been with a teacher, the teacher would have signaled to G.  “Look, G!  There’s your mom!  What’s your mom doing here?  That’s so unexpected!”  No, G had definitely not passed by with a teacher.  Did he walk to the office BY HIMSELF?!?

 

I lean over to take a closer look.  Yes, there’s G, and he’s not there with a teacher…  he’s there WITH A FRIEND.  He’s with his friend, Gabby.  (G loves Gabby.  She is vivacious, and silly, and her name starts with G, just like him.)  G and Gabby have come to the office on a mission.  They are getting a new box of tissues for the classroom.

 

The secretary hands them each a box of tissues, and they are on their way.  They are proud, they’ve accomplished their mission.  They are two kindergartners, pleased with their newfound ability to navigate the enormous hallways of this big school, a task which at one time would have seemed daunting and unthinkable.  They are looking forward to handing the tissue boxes to the teacher, to receiving her words of thanks and praise.  They are chatting with one another as they skip down the hallway, much too caught up in their conversation to even notice that I am there. Even if they did see me, they’d probably be oblivious to the silly grin on my face, and the tears gathering in my eyes.

 

I worry about G.  I worry about him every day when I leave him in his classroom. I hope he will have a good day.  I hope his day will proceed smoothly, without any bumps in the road that might send him into a tantrum or meltdown.  I hope he will participate.  I hope he will feel included.

 

I silently say good-bye to the back of G’s head as he skips joyfully down the hall with his friend, tissue box grasped confidently in his hand.  This image stays with me as I leave the building.  Maybe I don’t need to worry so much after all.

Disclosure

Last week, I attended a panel discussion hosted by the SPED PAC (Special Ed Parent Advisory Council).  The topic of the panel was “Talking to Your Child About Their Disabilities”.

We’ve been talking about autism in our house since well before G was diagnosed.  We had to have a way to explain to S the reason behind the army of Early Intervention therapists who occupied our home on a steady basis week after week.  For a long time we described the source of G’s struggles as, “G’s brain goes bloop, bloop, bloop.”  Here’s how the conversations went:  G’s brain is a little different than your brain.  Your brain goes bleep, bleep, bleep and that means that there are some things that are hard for you to learn, and they are lots of things that you can learn really easily.  G’s brain goes bloop, bloop, bloop.  That means that G can learn lots of things easily, but the things he learns easily are different than the things you learn easily.  Mommy didn’t need any extra help teaching you how to crawl, walk, chew your food, respond to your name, etc…  because Mommy’s  brain goes bleep, bleep, bleep  just like your yours.  Mommy needs help teaching G, because she doesn’t know how people whose brains go bloop, bloop, bloop learn the best.  But all of G’s teachers know, and they are teaching me.”

Eventually, we swapped the word autism in for bloop, bloop, bloop….  But it’s still the same concept.

Once I did start talking to S about autism, it came pretty naturally.  We have a few picture books on the subject that I keep pretty close at hand.  We’ve had some pretty good conversations that have taken shape after it became clear that the characters in the books share a lot of characteristics with her brother.

The word autism is part of our family’s vocabulary, and I imagine that it will work its way naturally into G’s vocabulary without much angst and effort on our part.

Concern over how to introduce G’s disability to G was not what motivated me to attend the panel.  I feel reasonably confident in my ability to find the words necessary to help my son understand his autism.  In some ways, I’m looking forward to the time that he is more verbal.  To a time when I can puzzle through with him the challenges, quirks, gifts and abilities that make up his deliciously complicated, extraordinary and fascinatingly unique brain.  I’m not envisioning talking to my child about autism, but more talking with my child.

However, I find myself more and more wondering how to address the topic outside of our house.   We are so fortunate to have friends who have known us a long time.  They’ve walked with us on this journey, as we’ve struggled with trying to understand the mysteries behind G’s unusual constellation of struggles and strengths.  Receiving a diagnosis, putting a name on it, was so helpful to us.  Now we know what we’re dealing with.  Now we can put together a plan, construct a path, that can guide us into whatever future will be ours.  Our friends have supported us, listening and learning alongside us.  For these long-time friends, autism is just a word to describe the quirky behaviors of the G they already know and love.

But what about the new friends? It’s such an exciting development, such a miraculous blessing, that G is fully integrated into a mainstream kindergarten class.  But with that blessing comes an unexpected dilemma for me.  I want G to have friends…  lots and lots of friends.  I want him to have play dates, attend birthday parties, socialize on the playground.  I want it all, and I want him to be successful.

I think that in order for him to be successful, the other kids (and their parents) will need to understand something about G’s struggles.  How he misses about 80% of information that is presented orally.  How he overgeneralizes rules to fit every situation.  How he seeks sensory stimulation through unusual sounds and motions.  I don’t want social situations to become awkward when these behaviors arise unexpectedly.  I also don’t want social situations to be awkward by throwing around the word autism when it’s not needed.  I want to pave the way for comfortable relationships between G and his new friends.  I also want nurture the budding friendships between me and the parents of G’s new friends.  What is the way to do that?  I want to speak openly about G’s autism, in an effort to create a bridge of understanding.  But how will that bridge be perceived?  Will my overtures be perceived as a sharing of information that will help our kids understand one another…  or it will it be perceived as an obtrusive over-sharing of personal information?  I hope it will be the former…  but I’m just not sure yet.

Welcome!

I’m happy you’re here.  Thanks for taking the time to stop by.  I hope you’ll enjoy sharing some stories with me.  Being a parent has definitely shaped the way I live, love, and see the world.  The experience of parenting a child with autism has given me countless opportunities to interact with the world in new and unexpected ways.  I hope you will stick around and share this journey with me by clicking on the “follow” button at the top of the page.  Feel free to forward me to friends:  parents of the newly diagnosed, special ed teachers/therapists, and anyone else you can think of!  And once again…  thanks for reading!

Minecraft

We have a new iPad in our house.  Whoo wee are there lots of interesting things to play on that thing!  S has been completely enthralled with the many games that allow you to enter and explore new and interesting worlds.  My personal favorite is the one with the singing monsters.  Somehow, you accumulate points that allow you to purchase monster eggs.  These eggs incubate and then hatch into a variety of singing monsters.  All the monsters then sing together in this crazy symphony of wacky monster music.  It’s pretty wild.

S’s current favorite is Minecraft.  Your avatar gets plunked down in the middle of a barren landscape.  The landscape is made out of cubes.  If you punch a cube, it disappears, creating a hole or a chasm.  or, you can go to the dashboard and select a cube and start building.  S can play this game for hours…  creating two and three story houses complete with landscaped gardens and rooftop swimming pools.  I love watching the imagination that comes pouring out as she creates  buildings and flower beds out of the once empty vistas.

G has recently discovered Minecraft.  He loves the sights and sounds of this imaginary world as much as his sister.  Only G’s interaction with this world is completely different.    He likes to punch a hole in the side of a mountain…  and then hide in the hole.  He likes to create a lake along the side of the hill…. and then jump of the hill and do a belly flop into the lake.  He likes to run his avatar around in circles until the whole world is spinning.  And the whole time that avatar G is running around the Minecraft world, real-life G is consumed with full-body belly laughs.

Maybe I should be concerned about this.  After all, I can only assume that MOST people play with Minecraft the way that S does.  Creating architectural wonders does seem to be how the game was intended to be enjoyed.  And don’t get me wrong, I am absolutely awestruck by the things S designs.  But there is something so beautiful, so deliciously freeing, about the way that G plays.  The wild abandon, the unfettered curiosity, and the body-shaking giggles.  It is all so authentically G.  My true hope for both my children is that whatever environment they finds themselves in (whether real or imaginary) that they will both be able to find their own path, the one that lets them explore and create in a way that brings them joy and fulfillment.

Looking For Paradise

Wow.  I just had the most unexpected (and emotional, sad, uplifting and endearing) conversation with G.

G’s latest obsession is geography.  We can play “Destination USA” (his new favorite boardgame) for HOURS.  He would absolutely bring his Earth Globe to school if it would fit in his backpack.  Stack the States (iPad app) will hold his attention for endless amounts of time.

So, we’re getting ready for bed tonight, and he takes his Earth globe down from it’s perch.  He’s looking for something.  Maybe a place he read about?  A hometown of a character on TV?

G:  Mom, where is Paradise?

Me:  (Thinking I heard him wrong)  Paradise?  Where did you hear about paradise?

G:  (Ignoring the question)  Mom, where is it?  Where is Paradise?

Me:  (I guess he’s asking what I think he’s asking…  so I might as well just dive in).  Paradise is Heaven.  You won’t find it on your Earth Globe.

G:  Where is it?

What happened next was a full blown, thirty minute discussion of dying, death, and the afterlife (as I understand it).  I explained (multiple times) that God did not make our bodies to live until infinity years old (which is the way G would have it if he could be God).  God made our bodies to live for a long time, but at some point, our bodies stop working and we are dead.  Our eyes don’t see, our ears don’t hear and our noses don’t smell.  When that happens, our bodies get buried in the ground in a cemetary.  Even though our bodies are in the ground, our souls float up to paradise and they stay up there forever.  Humans can’t see souls when they are in paradise, not even when you are in an airplane flying through the clousds.  Not even if you look closely.  But if you listen to your heart, you can feel the soul of the person you love who has died.

G:  Do you know someone who is dead?

Me:  Yes, my dad is dead.  He died twelve years ago and I miss him a lot.  His name was Steven.

G:  Did I know Steven?

Me:  No, he died before you were born.  But he was your grandpa, and I know he would love you A LOT if he was still a human on Earth.

G:  How did he die?

Me:  He got a sickness called cancer.  Sometimes when people get the cancer sickness, their bodies get healthy again, and they keep living a long time.  When my dad got the cancer sickness, he lived for a little while, but now he is dead.

G:  Will you ever see him again?

Me:  I won’t see him again as long as I’m a human and I’m alive.  But when I’m dead, the first thing my soul is going to do is float up to heaven, and find find my dad’s soul, and give it a big hug.

G:  Me too.  I’m going to find Steven’s soul and give it a big hug too.

G has been thinking about life and death for a few weeks now.  I’m not sure what triggered it.  Possibly that in his kindergarten class they planted bulbs and nurtured them into full-blown flowers.  G took the whole experience to heart, but was disappointed to learn that the flower won’t live forever.  I’m glad he was able to ask me the questions that were on his mind.  I’m grateful that, in the immediacy of the moment, I was able to come up with words that were meaningful to his very literal mind.  When a topic of interest takes root in G’s brain, it generates a lot of repetition…  so I know we’ll be talking about this a lot in the days and weeks to come.  This conversation gave me a beautiful glimpse into the truly empathic recesses of G’s soul (if I was God, I would let everyone live until infinity years old).  And finally, I’m delighted that the first thing G is going to do in Heaven is seek out my dad’s soul to give it a big hug.

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