Bye Bye Kitty

Okay, here’s the question of the day for you all: 

How does a parent help a child with autism understand, process & grieve for the loss of a family member?

About a week ago our beloved cat (who has a real name, but who has been affectionately referred to as “Kitty” for as long as Alex has been talking) died after spending her entire 18 years with our family.  She was an old cat.  We talked about that.  She was relatively healthy and active up until a few weeks ago.  We saw the decline coming.  First she lost her sight, then her hearing, then her balance.  It all happened so quickly that before I knew it, poor Kitty could barely stand up.  The night she died she could barely hold her head up.  It was just her time.

Alex was already asleep when the decision was made to take Kitty to the hospital.  Hannah was awake, having just gotten home from her Tuesday “girls night out” with Mom, and so we sat together and said goodbye to Kitty.  We told her she was a good cat, that we loved her.  We remembered good times with Kitty and petted her and wrapped her in a blanket.  Then we kissed our cat and Daddy graciously put her in the carrier to take her away.

I cried, Hannah cried.  Although I have worked with children and families in various counseling capacities over the last 20 years, I found myself at a loss for words.  It didn’t seem to matter that I’d run groups on grief and loss for kids, or that I’ve worked with families affected by cancer.  She was my cat, too.  And I was sad.

Holding my little girl on my lap, wanting to comfort her and somehow explain this whole mysterious process in hopeful, better-than-this-immediate-pain kind of words, I found myself reaching for the fairytale explanations. 

“Kitty will go to kitty heaven now.  And she’ll get to… chase butterflies… and drink all the milk she wants… and–”

“No, Mommy!”  Hannah cut me off midsentence.  “Kitty is thinking about me and missing me and crying kitty tears!” 

And with that, she clenched her little fist and buried her face in my shoulder and sobbed.  She was right.  The whole thing sucked.  Death sucks.

The next day Hannah told me she wants to talk with her kindergarten teacher and her friends at school about her kitty.  She told me that she still feels sad, but she is also looking forward to maybe one day having a new cat or possibly a bunny.  The typical ups and downs of the circular, squiggly grief process of a five year old.  I felt grateful she could articulate her feelings.

After Hannah bounced off to eat her breakfast, I stood watching Alex in the kitchen.  He was engrossed in his usual routine, munching gluten-free french toast and searching youtube videos for marble runs.  Again, I was at a loss.  I wanted to tell him about Kitty and somehow start to help him “process” all the stuff that goes along with saying goodbye to a family pet.  But of course Alex was just in a different place and I couldn’t– or didn’t know how to– relate right then.  I was the outwardly emotional one, he was the puzzle to me.

Alex knows Kitty is gone.  He recognizes we are sad.  He is aware of the space that is left in our home because one of its occupants is no longer wandering around.  I guess I could leave it at that and stand ready for questions, provide opportunities for talking about pets and families and emotions.  Trouble is, I have this nagging feeling that I’ve got to move on this and find some way to connect with Alex in a more immediate way about Kitty’s death.  One day, it won’t be a pet for whom we grieve.  Although I realize no one can ever be fully prepared for the death of a loved one, I want to lay some groundwork now while I am able to understand and process my own grief so that my kids and I might have something to grab and hold onto down the road.

Anyone know of any good books, teaching tools, online resources which are truly autism-friendly for talking to kids about death, grief and loss?

Required reading…

… for anyone who wants to explain autism to kids.

While brainstorming social skills resources with a co-worker today, I came across this brilliant blog post again.  Whatever the award is for authoring the most creative, empowering, right-on-target-get-the-job-done lesson for kids on how to understand autism, this amazing writer should get it.

The blog is “MOM – Not Otherwise Specified.” (see the nifty blog roll down to your right)  The post is “A Hair-Dryer Kid in a Toaster-Brained World.”  Please read it, take it in and share it.  If you know and love a kid– any kid, on the spectrum or typical, a relative or neighbor, or even the kid in you–  I promise you will smile after reading this.  Positively impacting the lives of children is a beautiful thing!

The thanksgiving list, with no added fluff.

Can I tell you a secret?  Those mushy Thanksgiving blogs make me feel kinda funny and lightheaded- not in a good way.  On one hand, of course it’s special and beautiful to write about the crisp autumn air and the smell of apple pie and the laughter at family gatherings.  Great stuff, I’m totally all for it.  But to be honest, if I wrote a post like that, I think I’d feel like I was missing my own point.  In fact, I might even make myself queasy.  So this year, I deliberately sat down to write a list of things for which I am truly thankful, a list which includes the most important stuff without all the fluffy crap.  Here it is.

I am thankful for music.  All kinds of music.  The songs and beats and melodies that run through my blood and make me want to take on new challenges and conquer the world.

I am thankful for expressions of joy.  On my way to work this morning I saw a little girl dancing her heart out at her bus stop.  Awesome, awesome!  Made me want to jump up and dance with her.

I am thankful for heartache.  Each time I have opened my heart to reach out to someone, to truly love with all my soul, there has been some heartache.  The pain of it, while as great and terrible to my psyche as a shattering earthquake to the land, has always left me stronger, more determined, and more grateful for my ability to immerse myself in relationships and experience love.  I would not be who I am were it not for heartache.

I am thankful for my memory.  The memories I carry with me are a forever reminder that love continues beyond the moment and the connections I’ve made are mine to keep.  What I remember of my past gives me hope for the future and all the discoveries that lie ahead.

I am thankful for my health, my breath, for the strength of my physical body, for my ability to run and dance and play.  I took my body for granted for a long time.  Now I realize, as I see various health problems break down the freedom or abilities of those I love, how amazingly grateful I am for my physical self.  Hooray for walking up stairs, for climbing trees, for bending into yoga poses.  Hooray for breathing chakras into alignment and the ability to eat well.  I am thankful for all those healers who help me become more resilient and treat my body with care.

I am thankful for teachers.  Those who share what they know because they are passionate and generous enable the whole world around them to be enriched.  I am grateful to be surrounded by teachers of a zillion different matters and areas of expertise, big and small, in just about every field I can imagine.  How blessed am I to be able to learn!

I am thankful for mentors.  For those who believe in the unlimited potential of others and whose main focus is to help people to reach their goals and feel good about themselves, to uncover and bring to light the hidden talents lying just beneath the surface and to celebrate them.  I am grateful for those who advocate for others and who refuse to compromise their positive view of humankind and their high expectations for the future.

I am thankful for words.  I used to think my vocabulary was so limited, that I could never find the words I wanted.  It wasn’t until very recently that I realized how lucky I am to be able to speak and write and think in words as well as pictures.  I am grateful for communication, understanding and language.  I am grateful I can tell you how I feel or what matters most to me.

I am thankful for the ability to create.  Art, food, comfortable spaces, community, situations in which people can experience happy, healthy things.  Creation, manifestation, achieving a goal, visualizing a dream, living life as part of the creative process, not as a means to an end.

I am thankful for you.  It doesn’t matter to me what country or community or area or situation or family to whom you belong.  You’re reading, so you’re listening.  And the gift for me is that my words are heard and acknowledged.  I am part of a community of sharing, discovering, growing people.  So many of us take that for granted, but isn’t that what we all want?  Recognition and the chance to know that we are heard?  To feel as if we matter to someone else, that our lives matter in this place on earth?  How lucky I am to have you!

Last– but most importantly– I am thankful for the two words I hear every night from Alex as he is drifting off to sleep (“Mommy cuddle”) and the kiss on my nose from Hannah Rose that wakes me up every morning.  They are touchstones for my sense of belonging in this world.  And I am most of all grateful to have been born of this universe and to belong here now.

… to pseudonym or not to pseudonym?

INTELLIGENT DISCUSSION ROCKS!

Okay, first of all, I have to say I love the autism blogging community I’m discovering.  Every time I read one of my favorites (see my blog roll down to your right, please) something sparks my passion and I just need to write.  What a beautiful, interdependent and interactive process!  I am so grateful for the ongoing dialogues and discussions.  Whether the writers are happy or angry or calm or overwhelmed, just the connections produce amazing energies. I’m often awed by the sheer technology of it all and how global this community has become. It’s pretty damn cool.

The latest big discussion about confidentiality and using pseudonyms happened here at Big Daddy Autism.  Big Daddy turned his blog over to Autism Army Mom for a post and the discussion they generated was mind-blowing!  (Read it.  Read it now!) … (oh yeah, then come back here when you’re done) …

Anyhow, my comment on that discussion just kept flowing and I thought it should become its own post.  I like to think that I’ve got readers from pretty diverse backgrounds over here and I get really tickled to get other people’s perspectives on things.  If you’ve got something to say about all this, by all means comment and share!

OPENNESS, MY RELATIONSHIP WITH MY KIDS, AND WHY I CHOOSE TO USE THEIR REAL NAMES

I’ve only been blogging since September and I guess I’ve remained “semi-anonymous.”  I use my children’s real names, Alex and Hannah, for two reasons.  First, I write from my heart, I don’t write anything I wouldn’t share in public or in front of them.  And I just have trouble writing authentically if I have to remember the new name of my first-born child or whatever.  My brain doesn’t work that way.  Whoops.  Second, my kids’ names are two of the most popular anyway.  There are three boys with my son’s name- first and last- who go to the same pediatrician.  Oh well.

That being said, as a licensed social worker who intricately understands and deals with confidentiality issues every day, I think that perhaps all the “pros and cons” on the subject of pseudonyms and parental blogs aren’t the real important things to think about here.  It’s not what we say, it’s who we are.  It’s how we creatively communicate with our kids, both typical and autistic.  Arguing about the way someone else chooses to write isn’t really the point, in my humble opinion. 

I know that communicating with Alex is challenging.  Still, I try to take each situation– no matter how confusing, upsetting or life-changing– and be there, ready and open for discussion, in whatever form it takes.  Right now, my children are little.  They love to see pictures of themselves online.  They love that mommy writes.  Alex has a whole slew of marble machine videos up on YouTube.  Should they change their minds about how cool all this is at any point in the future, I’ll change right along with them.  I’ll be honest about the subject matter, my feelings, the situation, and why I write, and I’ll listen to them just as intently.  Exactly as I do today! 

To be respectful of our children means to be present in the moment and be who we are and do what we feel is right at that time, not to follow someone else’s rules or to anticipate a terrible consequence that doesn’t yet exist.  (Like that our future teenage kids will be ostracized or hate us for sharing any part of their little kid lives.)  I want my kids to grow up to be their own wonderful people with their own opinions.  I am confident that if I am always honest with them and I show them through my actions how much love and respect I have for them, we will be able to get through whatever life throws at us, together as a family. 

I write because I love.  I hope one day Hannah and Alex will write about me!  And why exactly are we all so afraid of disclosure?  Sure, there are people in the world who are not-so-nice.  There are folks who seek out information in order to exploit others.  But if that stuff is gonna happen, it’s gonna happen anyway.  (See Stuart Duncan’s gentle reminders on the subject of internet privacy here.)  I personally believe the world is a better place when everyone can be authentic and real.  Yes, conflicts will happen.  But there is no way to avoid conflict, it is a part of life.  It’s how we handle it that counts.

BEING WHO WE ARE

In my ideal world, people listen and truly hear each other.  Not just listen for words, but for understanding and connection.  I think it’s so important to be who we are, where we are, in this moment and face whatever comes.  Most of the time, mind you, I struggle with this.  My anxiety takes over and all of a sudden I’m not thinking about being present in a conversation or a conflict or whatever, I’m thinking about the right thing to say, the other thing to do, the next place to go.  But whenever I’ve succeeded at staying mindful, the future worries never arrive in the present moment.

A few weeks back there was a “communication shutdown” to raise money and awareness for autism.  Several folks who disagreed with this tactic chose to lead a day of “speaking out” for autism.  Although I believe all awareness-raising can be useful, I did not participate in the communication shut down.  I chose instead to remain online mainly because I strongly suspected that if my son could communicate all that is in his head, he would have said:

“Mom, I get so frustrated not being able to find my words! I am thankful when people use whatever communication abilities they have to bridge that gap. Use your gut instinct, use words and pictures, do what you feel. I am right here listening. I know you respect my lack of communication and I also respect your verbal ability. Today I need you to be who you are:  a person who can speak out for me.”

Part of being who I am is speaking out, using my words and sharing my thoughts on this blog, advocating for my kids, and being open about who we are, autism life, and what we’re going through.  What will become of all these “mommy blogs” when our kids grow up?  Who knows?  I say, hold hands with your children, bring on the evolution and let’s all enjoy the process!

Any comments?

… my gosh what a ramble …

Community, communication & unspoken understandings…

(a post about “the village,” the power of words, and shared celebrations…)

Last Sunday we went trick-or-treating in our neighborhood.  Alex was a Jedi Knight, the perfect costume for a handsome boy obsessed with lights– what other character can flash a charming smile underneath a mysterious hooded robe AND carry a nifty bright blue light saber at the same time?  Hannah was Cinderella.  I earned big points when I figured out how to roll her very fine mass of long blonde hair into the perfect princess bun on top of her head and pin it so it stayed put.  Then when I sprinkled some “magic princess dust” (read: cheapo body glitter from the mall) on her hair and dress, she actually gasped!  Score one for the mommy!

The kids rushed through dinner, I put on my favorite pair of cat ears, and away we went.  Our neighborhood has one street that is trick-or-treat central.  It is always crowded with families and each house is uniquely lit up and decorated.  It feels to me almost like a Norman Rockwell-esque Halloween painting:  expertly carved pumpkins, smiling grandmas with baskets of candy, entire families in costume, tree-lined sidewalks with crunchy leaves.  Owls even hoot in unison and someone is inevitably playing some kind of spooky, yet not-too-scary Halloween music.  I’m serious, no exaggeration.

The kids pretty much know the drill, so we don’t have to do a huge amount of coaching anymore.  Only tricky parts are keeping Alex’s enthusiasm and energy in check (remember he’s a runner and he’s fast!), reminding him about Halloween etiquette (like no going all the way into someone’s house) and trying to quell his new anxiety about dogs.  This last one has become quite a challenge.  At the sight of a dog, Alex will take a running leap and attach himself to me, heart beating like a rabbit, eyes darting every which way, occasionally squirming higher to make sure his feet aren’t in danger of being nipped.  (Although Alex is genuinely scared, I gotta admit the whole scene is kind of comical to onlookers since I’m not much taller and bigger than Alex is now!)  So the long and short of this is that if Alex suspects that a home *may* contain a dog- any dog, big or small- he will actually hold the door to the house shut.  Kind of a problem when there’s a line of kids waiting for candy with the poor homeowner barricaded inside!  Ugh.

We made our usual rounds.  Things were going well.  Halfway down the street, after stops on several porches, I noticed people at their doors saying things as we approached like:

“Don’t worry, Alex, there’s no dog” and

“Come here, Alex, I have some candy for you” and

“This way, Alex, that’s right, good job!” 

At first I thought, “How sweet that so many of our neighbors know and remember my son. What a nice place to live!”  Then it occurred to me that most of these folks actually didn’t know Alex.  But they had heard me say the same things over and over at each previous home—sometimes a bit louder than was intended, apparently—and they were simply taking cues from me as to how to make Halloween work for Alex.  That in itself does make my neighborhood a nice place to live, but in a slightly different way.

As I realized what was going on, I smiled to myself, turned to the mother next to me and said, “Apparently everyone knows Alex!” with a chuckle.  She smiled.  Then I said, “We live in Holland, but we still visit Italy on occasion.”  She laughed and nodded yes.  She understood.  I noted the small-world-miracle in that, nodded back and ran to catch up with the kids again, calling:

“Alex, honey, let go of the door, there’s no dog in that one….”