Dancing with Shadows

Last year, our three-year-old son, the youngest of our three, was diagnosed with an autism spectrum disorder called Pervasive Development Disorder--Not Otherwise Specified (PDD-NOS).

The diagnose is like many "Other" labels in that medical professionals recognize him as different, but can offer few specifics or effective treatments.

He has a follow-up appointment soon with the same specialist, and I thought it was fitting to post this about his life.

I have been playing with this post for months, and finally just decided to go with it as is.  

As a result of the delay in publishing, some of the descriptors of him are no longer accurate--like the Binky use referred to was true 6 months ago, but not now.

 In any event, "Luca" is not our son's real name.
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The world hears you as loud, and wonders why you won’t conform and be quiet.
  • We hear you celebrating your happiness with shouts of joy.

 The world sees you running carelessly oblivious to danger. 
  • We see someone with amazing focus; a child who can filter out anything considered to be an unneeded distraction.

 Older brother’s friend watches you and asks your brother: “What’s wrong with that strange kid?” 
  • Unashamed, older brother smiles and replies: “That’s just Luca.”

 A neighbor is surprised to see you join their grandson’s outdoor birthday party uninvited and sporting no clothes. 
  • We now understand that a fence can be jumped, several lawns can be traversed, and mom can be outrun—that those obstacles are simply not enough to impede your willingness to participate in what looked like a great celebration.

 The world wonders why you would want to watch the same funny video clip repeatedly. 
  • We realize that your laughter brings happiness--to you and others.

 The world wonders why you don’t say much. 
  • We cherish each word and are overcome with emotion when we hear your greet us with even the simplest stuttered “Hi Daddy” or "Hi Mommy."

 The world sees you sucking on a Binky and declares you too old for it. 
  • We understand that the Binky serves a purpose—to protect your mouth from injury at the playground.  Some of the falls and collisions that you have suffered, a few that even resembled the old Vinko Bogataj Agony of Defeat clip, have been... well... unbelievable.

 A large group of teens at the playground is confused as you walk and dance into their midst just as two guys square-up to fight.
  • We watch the group's confusion turn into smiles and laughter as I retrieve you from the center of the ruckus, and then observe the near-combatants and spectators disperse with no punches thrown.

The world focuses on your limitations: your quick temper, your stumbled speech, and your seemingly lack of attention. 
  • We look beyond what is on the surface and observe. Understanding that in the right environment, you outperform your driven and sometimes know-it-all twin sister.

The world sees you as odd; someone who seems to stare and smile at nothing. 
  • We see you as one of the loving souls who is unafraid to dance with his shadow—unconcerned if anyone is watching.
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Each child is a gift, and we realize that we are blessed to be a part of our son "Luca's" life as he dances with shadows.

51 comments:

Eternally Distracted said...

He sounds like a very special little fellow with a fabulous family :0)

Matthew Rush said...

Slam that was beautiful, thanks so much for sharing that very personal post. Each example was wonderful but I especially loved when Luca broke up the fight that was brewing.

My Husband's Watching TV... said...

Great post! I work with children with disabilities and its always great to see them with loving, supportive parents. It helps both us, the child and the parents to have a positive experience. Thanks for sharing!

Creepy Query Girl said...

This brought tears to my eyes. My five year old nephew was diagnosed with asperger syndrome and a sensory problem (he doesn't like having clothes and shoes on, can't sleep with covers, etc...) It's so important to really see them for who they are. It sounds like you have a very beautiful and inspiring little boy.

J. J. in Phila said...

Your son is not limited. The rest of us are.

Absolutely outstanding.

ooglebloops said...

A beautiful tribute to the "differences" that make Luca special! He's in the right family.....

Audrey Allure said...

This is such a sweet post, what a great joy your son seems to be :)

Tara said...

B/G twins? Whew, it's some work isn't it? But, oh SO rewarding - especially after that first trying year :)

I have two friends whose children have very similar diags.

This post? Simply beautiful. Thank you for sharing.

Clara said...

I have no words, except: You, lady, has just become my role model.
Thank you so very much for this post.

Ann T. said...

Dear Slamdunk,
What a beautiful boy, a beautiful family, a beautiful post. Slamdunk, I don't really have the words this time. You said it all.

So I will echo J.J. and Matthew and Creepy Query Girl.

Thank you for telling us about your remarkable boy and the remarkable family that loves him.

Very truly yours,
Ann T.

Krista said...

This is beautiful, poignant and sweet. Luca is blessed to have such caring parents.

Thank you for the reminder that things are seldom as they seem at first glance!

Nikole Hahn said...

A child's laughter does stir the cobwebs and make the dust clear and the sunshine to stream inside.

Together We Save said...

He sounds like a special little man!!

Meadowlark said...

Great post. Great kid.

THE HECK WITH THE PROVERBIAL "THEY".

Erin said...

Your love for your son and positive outlook are inspiring.

mrs. fuzz said...

This was very sweet and inspiring. Thanks for choosing to share it. I believe that children that come to us with "disabilities" are extra remarkable spirits sent from above. I'm glad you get to be one of the parents of these children.

3 year old twins? You really are sleep-deprived, aren't you?!

Candice said...

I know what it's like to be the parent of a special child. Isn't it amazing how much differently we view the world?

mappchik said...

Both of my boys have been placed on the spectrum, though labeled with different alphabet soup.

Several of your son's stories sound familiar.

Each of my boys have provided us with frustrating days and sleepless nights of worry. (Since they're 16 & 10, we have many more to go.) But they've also given us countless belly laughs, creative family activity days, and a different way of viewing the world.

Thank you for sharing the silver linings from your family stories. Your son is definitely in the right family.

Elena said...

Luca is very lucky to have you as a parent and you are lucky to have him as a son. I'm sure you'll both learn a lot from each other and hopefully the world will as well...

Rowe said...

Your little boy is an angel, whatever the *diagnosis* says about him. It may be a little or a lot more challenging for yourself and Mrs Slam at times, but I get the feeling your family will all handle Luca and his particular needs beautifully. Your wonderful sense of humour is sure to be a big help.

Luisa Doraz said...

Your son is a gift. A precious one at that. He teaches you all many things. I can see with your writing that love in your family over powers all. :) I know that your son is sooo lucky to have you for a dad. :) Thank you for this story. My oldest son...who is now in his 3rd year at UCLA....was also labeled as a child. Look what he is doing today. Have a fun week. :)

Kimi said...

I've never heard of PDD-NOS, but I am familiar with autism (one of my cousins is diagnosed with it). As I read through the list I kept thinking of my cousin. I ask myself, Why is it that the world shuns things that are not of the norm? In all things great and small, there is beauty and I envision it in your son when I read through the points. You're a remarkable father and I'm sure your son is worthy to have you for a dad for accepting him for who he is. Keep it up and thanks for sharing.

Herding Cats said...

I have had many students "in the spectrum" and your perspective is amazing and heart-warming to read. Yes, these kids can be a challenge, but they are also some of the kindest, happiest, and most amazing people to know.

jodeeluna said...

This post is incredible. I can tell that your son has given you the gifts of love, friendship, and perspective. I have the privelege of teaching special needs youth and the rewards are as you describe. The gifts these youth bring to me touch my heart, amaze my mind, and brighten my day. I so appreciate the way you expressed what really matters, one special little boy who is a gift from God!

James (SeattleDad) said...

Beautiful Man. It was no nice to read these terrific ways you see him as the truely wonderful child he is.

Javajune said...

This was so beautifully written. It's so hard to except anything or anyone who is different but as you pointed out his life serves an important purpose. A little distraction from the daily frustration and anger that sometimes consumes us. Great post, I'm so glad you shared with us.
xo-jj

suzicate said...

Absolutely beautiful. "Luca" is a peacemaker. He is doing what many of us dream of doing...dancing to our own drum beats. You and your wife sound like wonderful loving parents. I couldn't help but snicker at him showing up naked and univited to the neighbor's party!

LadyFi said...

This was a truly beautiful and moving post! A reminder that we must look beyond the cover to the heart of the book instead.

Hilary said...

If only all kidlets were born to the right families as Luca certainly was. When my kids were young, I used to spend a lot of time volunteering at their school. I became aware of the term PDD and got to know a couple of the kidles who were thus labeled. I saw the looks.. the bewilderment.. the exasperation of others which followed these kids. But just like Luca, there was so much more to them just below that surface glance. This is a beautiful post and I thank Lady Fi for pointing it out to me.

DB Landes said...

Thanks so much for that wonderful look at your life with "Luca." Thanks so much for all of the appreciation for him and his gifts.

Rachel said...

Tremendous - how important our perspective is and how our perspective can affect the lives of others.

Rachel

Kristen @ Motherese said...

Thank you for sharing this beautiful and personal piece, Slamdunk. I know that the world does not always treat its children with the kindness and compassion they all deserve. "Luca" is lucky to have you as a father, one who will allow him to dance with the shadows, and we are lucky to have the chance to read your tribute to him.

With gratitude,
Kristen

Natalie said...

Thanks for this, and being such a great father.

Diana said...

the world is so limited in what it understands.

i totally know what you're saying... been there, done that with one of my kids {with a different handicap, for lack of a better word}. and helped a class of special needs children... i felt blessed to be there with them, to learn from THEM.

thank you for sharing him with us. beautiful post! {hugz}

Momma Fargo said...

What a great story and you are great. I know I sound like a broken record. But it's true.

Sandra said...

Speechless, at the moment. Well said. Now I need to go get a kleenex.

Suzanne said...

This put a smile on my face. Thank you for sharing.

LisaF said...

Luca is one lucky little boy to have such wonderfully understanding parents. Your perspective is what will help him succeed.

eemusings said...

That was a beautifully written post from the heart. May your son always be surrounded by those who love and understand him.

Jayne said...

What a lovely post about a beautiful soul with a very loving family. You're all very lucky to have each other.

Gladwell Musau said...

This one brought tears...into my eyes! Lord, I pray for a different set of eyes...to see beyond what the world calls normal. Thank you for sharing with us! My heart is blessed...deeply blessed by those words.

God bless you...and LUCAS as he dances in his shadow!

Gladwell

Midlife Jobhunter said...

I'm so glad I tracked back to see this. How lucky this young boy is to have you as a dad. Often times those children that march "out of the box" become exceedingly gifted contributors to our world. Never forget that.

Anastasia said...

I work with a few autistic kids. They are awesome. Autism in the medical world frustrates me though. Because like with your little one he is only a partial diagnosis and then on the other hand too many kids are overdiagnosed with it.

I laughed out loud at the birthday party! Mom can indeed be outrun. ;)

terri said...

What a beautiful, beautiful post. Oh, how I wish all parents could see past their children's "shortcomings" and really realize the gifts and strengths that make each child unique.

Abigail said...

What a touching and poignant post. Thank you for sharing the gift of your son.

beth said...

what a beautiful post
and what a beautiful gift your son is !!

different is good once it's embraced and not frowned upon...but you've already figured that out.

Cricket said...

Before I formed you in the womb, I knew you...

Yes, every child is a gift - every one. This is a beautiful post. It reminds me a bit of my nephew.
Congratulations on the potw.

Thanks for sharing your gift.

Land of shimp said...

The next time I see anything, or anyone in the world that might make me think, "Well, that's different...I wonder..." I'm going to think of your post, and your son.

I'll remember that just because something doesn't perfectly fit a picture within my mind of what should be there, doesn't mean what I'm seeing is without great value.

Thank you for that, and thank you for sharing both your son's and your spirit with us.

June said...

So often what seems to others as tragedy is a great blessing.

Brian Miller said...

i do therapy with kids on the spectrum...your post touched my heart. he is a special little boy.

makingnew said...

I'm so behind on reading and commenting, but wanted to be sure to do so here. Prior to my life in the banking industry I taught preschool and also oversaw a special needs Sunday School. It was such a blessing for me, and I can see several of "my" kiddos in this post. What a lucky boy to have such wonderful parents and siblings!