A Message of Encouragement

In honor of Spring, in honor of Autism Awareness Day, and in honor of all the AMAZING mothers and dads so tenderly dedicated to the love and care of our precious children on the ASD spectrum, and for parents everywhere of ALL special needs children…this one’s for YOU !!!


Have you ever truly listened

to the sweet melody

of a tiny bright bird

so joyous and free?


Do you know that she sings

come rain or come shine?

She cares not the difference

She sings ALL the time!


Have you heard in her song

a message to you?

Do you feel in your heart

a need to sing too?


Sing THANKS for the morning

Sing THANKS for the day..

Remember to sing

when things don’t go your way!


Sing with your smile

and sing through your tears,

the song in your heart

will add LIFE to your years!


For a heart filled with song

which was born of the soul

is a heart full of joy

that never grows old.


Like the tiny bright bird

a sweet melody

will lite on your lips

and set your heart free.


TAKE FLIGHT WITH A SONG!

TAKE FLIGHT AND BE FREE!

Join birds on the wing

as they sing FOLLOW ME !


J’nette Lee


I wrote this poem some ten years ago as I was studying for an upcoming cardiology exam out in the back yard one warm, early spring morning. The air was filled with birdsong .. the trees above my head were alive with birds singing their little hearts out. So much so, I had to put down my books, lay my head back, and absorb the blissful moment.

As I lay there taking it all in, the words above began to fill my head. They kept coming. When I could ignore them no longer, I finally reached for my pen and began writing them down.

I now dedicate this to all of you in the ASD Community. May your lives be filled with sweet birdsong…no matter what circumstance you may find yourselves in.

A Grandmother’s Perspective..from a Grandmother’s Heart

We calculate the distance to the farthest reaches of the universe , we gauge the depths of the seas. We measure success and we measure our worth… but we have yet to discover how much the human heart can hold.

Nor can one fathom, much less hope to ascertain, the capacity of this one blessed grandmother’s heart.

 

Perfect love sometimes does not come until the first grandchild”~Welsh Proverb~


The birth of my first grandchild was anticipated with unbridled joy.

Indeed, I was downright giddy. At times, I felt selfish and and somewhat guilty over my inability to restrain my my jubilance as my poor daughter struggled to maintain her composure and her dignity in those last uncomfortable months of her pregnancy. This child was going to be a whopper, and it was more than evident in her belly, her gait, and her obvious physical discomfort.

On February 16th, 2008 this bouncing baby boy made his grand entrance into our world. All 10 lbs, 2 oz. of him. He was so big, I had joked about him arriving on his Hotwheels at his own debut. He was PERFECT from the top of his head to his tiny pink toes.

As I gazed at him in awe and wonder before they whisked him away to be weighed, measured, poked and prodded, an indescribable, overwhelming wave of emotion washed over me. Part deja-vu as images of flashed before me of my own two wee ones I had brought into this world so many years ago, and part something new..totally new and unfamiliar. What WAS this feeling? Was it mere emotion, or was it something more?

I had always thought a mother could experience no greater love than to lay eyes on her newborn.. that it was virtually beyond the realm of possibility to know any greater ecstasy that to nuzzle the soft, warm cheek of one’s offspring the moments after birth.

But this? NOW? What WAS this  palpable, aching fullness I was feeling in my chest? Again.. a sensation more than emotional.. but PHYSICAL! I could literally feel the walls of my heart expanding as it seemed to grow larger and larger.. a bright red balloon being slowly filled.. and filled.. then filled some more..with the warm breath of purest love. How far would it stretch? Would it finally rupture and burst? Or would my feet simply rise up off the floor, would I find myself floating up toward the ceiling, bobbing gently like a helium balloon? Just what WAS the ultimate capacity of my heart? How much more could it possibly hold?

It remains the unanswered question.

There is a seemingly unlimited capacity for love. If we are indeed made in our Creator’s image, as I believe we are, then this should come as no surprise. The breath of Love breathed into us is the same love that we too, are capable of.

Unlimited. Unending. Unyielding. Unrelenting. And UNCONDITIONAL.

The “condition” of my grandson’s Autism only serves to stretch the walls of my heart to an even greater degree. To make room for even more love. He is nothing less than perfect in my eyes. For I see this child not merely with the eye…

…but with the heart.

The heart of a grandmother.. blessed beyond “measure” to have him in my life and to love..unconditionally.

Omi loves you, Gavin. Forever and Always.

Transitioning from Alzheimer’s to Autism (part II)

part II .. the other “A” word……. *Autism*

When this photo was taken,  we were already well acquainted with that ugly “A” word..Alzheimer’s. What we were NOT familiar with, was that OTHER “A” word.

Nor had we any way of knowing that Gavin gazing into his Great-Omi’s eyes this tender moment would be one of the very few eye contacts he would make, for how long remains yet to be determined. We were blissfully unaware of what would eventually become a mad race to familiarize ourselves with yet another “A” diagnosis.

Gavin appeared to be quite the typical baby. A sweet infant, easygoing, rarely fussy. While he never was particularly “outgoing”  his infancy was relatively “typical”. He wasn’t one to get excited much (except when gazing at the spinning ceiling fans).. and he seemed to quietly take things in stride. Had that serious, almost scholarly  look about him. Instead of engaging and interacting, his demeanor was more that of a studious little fellow, quiet and

reserved, but content. 

He loved dogs from early on, and all the dogs readily took to him…

…lavishing him with doggie kisses which Gavin eagerly accepted.

Gavin even dispayed occasional moments of silliness .. … and never, ever shied away from the camera. Indeed, as time went on, it seemed camera time was when we got the best eye contact.

Yes, we “noticed” things, but weren’t alarmed. “all kids grow at their own pace, don’t compare to other children” would continually echo in our heads. So my daughter’s little fella was simply the focused, quiet type. I remember daughter even mentioning with a sigh of relief one time after visiting friends with neurotypical peers his age “sheesh, I’m sure glad Gavin IS “quiet” and not all loud and demanding and pushy and obnoxious like those kids !”

It wasn’t until well into his second year that we began to scratch our heads. No matter what approach we used in trying to get Gavin’s attention, he never would turn his head and give us the time of day. It was as if he was stone deaf. Yet he was able to hear Sponge Bob and Blues CLues on TV and come running. Odd. Nonetheless, daughter had his hearing tested. Fine. His hearing was just fine. So was he just tuning us out? How rude is that!

All the other “red flags” as we were later to get to know them soon became apparent as well. “look how cute, how he loves to spin!” “look how he loves walking on his toes.. must feel good, must be exercising those little leg muscles for studly calves”.

It wasn’t until we noticed he really, REALLY didn’t enjoy interacting with other children and would make a real point of going in the opposite direction when they approached him, when he would sit for hours spinning the wheels of his beloved cars and trucks rather than actually PLAY with them, his total lack of engaging and eye contact which was getting worse instead of better….his intense almost OCD focus on certain things (car tires, flags, flags, and MORE flags) that the dark dread of the unknown began creeping in. We hesitantly entertained the fleeting thoughts that perhaps, just PERHAPS.. something might not be quite right. Something was “missing”. It was no longer “look how cute”.

Early Intervention came in after the hearing test to “observe”. No one ever dared breathe the word “Autism”.

It wasn’t until a friend of my daughter cautiously mentioned it, that Jessica bravely took it upon herself to venture online and do some research. She sent me the results of her findings, and our world on that day began to spin and spiral downward into a frenzy of  confusion, dread, fear of the unknown, and every other imaginable emotion known to man.

We both furiously hit the internet..wanting to know more, yet NOT wanting to know more at the same time. The next several months were spent frantically searching every available resource.  It all pointed to the same outcome. The dreaded “A” word.

From one “A” to another “A”. What the HECK???? (putting it politely) Welcome to Autsm 101.

Fast forward to January of this year. The kind and gentle EI lady came back once more. I just happened to be visiting Jessica and Gavin that day. In fact, was getting ready to head home when she knocked on the door. After the usual greetings and introductions, and about a half hour of observing Gavin, she hesitantly, gently.. and tearfully.. broke the news. “I’m so sorry. I’m not a doctor. But I truly believe from everything I’ve observed over the past several months, that Gavin is on the Autism Spectrum”.

She kindly gave us time to compose ourselves, then wept with us as she shared that she, too, had a 17 year old autistic grandson.

We were not shocked by this time. But we were devastated, and the pain was profound. Hearing the spoken words brought a new and real quality to what had been up until now only “possibility and unqualified fears”. Now we had to rethink. Our whole world had just changed.

There was work to be done. Appointments to be made for official diagnosis. Books to be read, more research to be done.

And for this “Omi”, no more hopes of easy breezy retirement ahead consisting of lazy days of carefree leisure and travel… no moving off to warmer climes. No, my daughter needed me now more than ever, and I needed her… and I so need to be near my only grandchild.. whom I had eagerly anticipated and waited for so long..

…and had deeply and intimately loved well before he ever popped his beautiful wee head into this world.

Gavin was officially diagnosed with HFA on 16 Febraury, 2011 on his third birthday.

~Gavin and Mommy Jessica enjoying a reprieve at the hotel pool after the 4 hour drive to to Kluge Children’s Clinic followed by 4 grueling hours of intense, multidisciplinary evaluations the day of Gavin’s diagnosis.~

Transitioning from Alzheimer’s to Autism…

Part I…. The “A” word… *Alzheimer’s*

She holds her first and only great grandchild, Gavin. Yet she has no comprehension of whose sweet baby this is. Nor does she recognize her only granddaughter, the mother of the child she holds. She tries her best at pretending she does.

Alzheimer’s had robbed her of her memory like a thief in the night.

Mother (“Mutti” in German) as she was known to us, delighted everyone she met with her unrelenting charm, bright smile and twinkling eyes. Her laughter was contagious. Mercifully, this was the one thing Alzheimer’s was unable to steal from her.

And for this I shall be eternally grateful.

At the time the photo above was taken, I was becoming uncomfortably familiar with Alzheimer’s, as I watched the slow regression of a strong and vibrant woman who loved life to the fullest.

Schooled in opera, voice, and music.. both at the University of Vienna in her homeland Austria as well as as in Italy, Mutti was an accomplished soprano and cellist. She possessed the voice of an angel.. and music was her life.

World traveled and fluent in several languages, this engaging woman now struggled visibly with a body and mental faculties which were failing her miserably. To say this was painful to watch on a daily basis is truly the greatest understatement.

Yet to the end, she retained her love of life and delightful sense of humor.

And nobody loved the camera

better than she!

Mutti passed away July 3rd, 2009.

It’s not been two years yet, and her presence here in my home where she passed remains painfully palpable. For nearly four years my sister and I had taken turns sharing her care between us after it became undeniably clear that Alzheimer’s had taken yet another hostage. For 6 month intervals my sis Pati and I would take her in to live with us respectively. Arizona with Pati and “Roo” for the cooler winter months, then here with hubby and me in Virginia for the summer months, to escape the AZ. heat.

It was on my last watch here with me that she passed. And true to her style, she would not easily relinquish this life she so loved. She fought death for 30 hours as I held vigil by her bedside. She held on to the last fragile thread of life as long as she was able, as I nursed her and wiped her brow… and played my entire library of classical music softly in the background to smooth her transition from this life to the next.

Hearing being the last of the senses to go, I know she heard that music.

Mutti now adds her voice to those of the multitude hosts of angels above..

…and I can hear her singing.

The Reflecting Pool


So here I sit yet again. A familiar place, a comfortable place.

I’ve come to know it well over the years. A place of sweet solace. Gentle, yet prodding.

It beckons me, and I come willingly. Eagerly. Like coming home.

I feel welcome here, and whole. It is here I am able to capture the illusive fragments before they slip away .. like the dandelion’s tiny seed bearing parachutes dancing in the wind. Each is precious, each a treasure not to be lost.

It is here I gather my thoughts. It is here I slowly turn the pages of my memories and allow myself to taste the many flavors of the emotions attached to them. Most are sweet, and these I savor. Some are bitter, yet even these must tasted and the memory stored. Each flavor has meaning and significance, for how would I know to appreciate the sweet had I never tasted bitter?

The Reflecting Pool is within. I come here often. I am known here. I am welcome here.


Welcome Home.

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