Small Victories… Big Celebrations

“I peed standing up” !!! 

“I peed standing up ! Just like Daddy !”

For the very first time, Gavin surprised us with this new feat over the weekend. He was visiting here with his Mommy and began doing his little “dance” (the “pee pee dance” his Mommy calls it ). Being keenly aware and finely tuned to his every move and expression, she was familiar with the “dance” and knew he had to go. They headed to the bathroom.  A few minutes later, he reappears in the living room, happily hopping around and exclaiming

“I peed standing up!” (hop, hop) 😀 “Just like Daddy!” (hop, hop, hop)

WOW.

Another milestone reached. It was only this summer that he conquered his fear of sitting on the commode, and we were thrilled that he has since been going potty on his own and wearing big boy undies.. with the occasional pull-up.

Now he surprises us yet again.

Daughter informs me that when she began to assist with his clothing, he pointed to the commode and said “put seat up”. After her initial quizzical look, she followed his instruction and waited to see what would happen next. Sure enough, he faced the commode and proceeded to pee just like a “big boy” !

Ahhhhhhh, the small victories we celebrate so hugely. And rightfully so. For every wee step is truly an enormous stride and deserving of celebration.

We all gleefully joined in on his victory dance, letting him know he had accomplished something special. We wanted him to FEEL special in return.

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Then……and Now

ImageYes… it has been awhile. Nearly eight months since I last wrote? Life happens. Such a busy summer enjoying this life with Gavin, making the most of every blessed moment with him. Busy also with changes at work, adapting to new position and responsibilities there. Before I knew it, the Holidays were upon us, and I wondered “OMG…just WHERE has the year gone” ????

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In March, Jessica, Gavin, and I return to Kluge Childrens’ Clinic in Charlottesville, VA., to have Gavin re-evaluated.. an “annual eval” so to speak. I do believe they will be pleasantly “shocked and awed” at the changes in Gavin…in the HUGE and amazing strides he has made since they first met him one year ago.

So I shall attempt to update in a nutshell.. ( ha! Now THAT will be a chore in itself! )

To begin, we enjoyed a summer filled with sunshine, water, play, and laughter. A sheer delight!

Lazy days at the lake, special afternoons at the playground. A wonderful fun and learning filled week at a ASD Kids Summer Camp for Gavin. Brisk autumn afternoons at the river. Fall Festivals and Pumpkin Farms. Christmas lights and displays.. and Gavin’s first time sitting on Santa’s lap ..without prodding. Sharing in Gavin’s gleeful anticipation of Christmas and counting the days… he was so aware of it all this year and eagerly participated.

A quick collage of pics to walk us through the year: (click on collage to enlarge)

Yes.. “my, how he’s grown” !!! 🙂

And in so many ways. Our little man has done SUPER well in school! He’s thriving. In fact, he is being mainstreamed now… taken out of Special Ed for one hour each afternoon to join those in “regular” class. His very first “Class Picture” !!!

Socially he has grown by leaps and bounds! No longer does he break out in a sweat when his peers approach him. He now plays alongside them, interacts eagerly with them, even goes up to them and gives them hugs !

He has even enjoyed occasional “play dates” :

This has certainly been a move in the right direction, and an absolute joy to watch ! He is far more verbal now.. indeed, he has become quite the chatterbox! He makes his needs and wants known, and then some. The other day in school he asked his teacher “may I have some more juice, please?” Unthinkable only a year ago.

And he talks to Omi on the phone !!! Pure bliss.. and melts my heart every time.

“Hi Omi”. “I love you, Omi.” “I miss you, Omi” “Talk to ya later bye!”

The reciprocal part of “conversation” still needs work.. he replies with short “cut to the chase” answers… no frills. (typical male, lol!)

He is engaging more and more in pretend play now as well… loves his stuffed animals and thinks up all sorts of scenarios to put them through. Using his imagination.. and he sure has an abundance of it !

He is brilliant, without a doubt. He reads AND writes at first-second grade level. He can write all the names of all his classmates, can spell just about anything. But then.. he always HAS had a fascination (obsession?) with the alphabet. He would rather read all the signs at the park that play on the slides or swings. He reads his books to US, rather than the other way around. He absolutely loves to write and spell.. on anything, WITH anything… sketcher, iPad, computer…magnetic letters, you name it. If he can find a way to create words, he will do so.

The only child I’ve ever known to make WORDS out of Legos !!!

He creates letters and words out of cookie dough, clothes pins, string, twigs… and SEES words/letters in EVERYTHING.

Sensory issues… improved in so many areas. No more meltdowns when getting the dreaded haircut, for example.

He does really well with them now. We remember the days when he wouldn’t even let Jessie wash his hair in the tub, much less have someone cut it !

He lovvvvvvvves lights and flashlights , spinning lights, changing lights. I got him a Lava Lamp for Christmas. 🙂 And a kaleidoscope. 🙂

He still has trouble with loud or sudden noises. Still toe walks, but will stop when reminded to walk flat. Still some issues with textures, etc. Food textures included.

Doing better now with getting wet, spilled on, muddy, dirty. No more traumatic cries of “Clean OFF” !!!!!!!!!!!!

This pretty much sums it up for now. We are overwhelmed AND overjoyed at the progress he has made thus far and are eager to see what the evaluation in March produces.

I am now SEMI semi retired, and hoping to blog again more frequently. I have missed it, and I so want to pass this along to Gavin someday.

It has certainly been an amazing journey thus far. We feel very blessed, very grateful..and very much looking forward to seeing what this year brings !!!

” Where Omi go? She MISSIN’ ! “

Last week, I had the unfortunate happenstance of being rushed to an out of state teaching hospital via cardiac unit ambulance for unrelenting heart palpitations and dysrhythmias.

My husband being quite distraught, my daughter quickly offered to meet him and drive him to the hospital to meet up with me there. Of course, this also meant bringing Gavin along, as she had no one to leave him with, her husband being at work.

They arrived about an hour after I was admitted to my room. Gavin seemed blissfully unaffected by it all. He climbed right up onto my bed for huggles and smooches.

He particularly enjoyed the large window nook, scrambling over “PaPa Jay” to gaze down at the sights below.

He even presented me with something he had made in school that morning.. a picture frame with his picture in it !

Oh yes…so, so much sweeter than flowers on my night stand !

He quickly claimed the linens closet as his own private little nook, curling up in there for some quiet reading  and iPad time. 

He didn’t understand any of what was going on.. he was just happy to see Omi, and took this all in stride, never seeming to question the new surroundings, or why we were all here.

But when they returned home that afternoon, it was a different story. This is when he began to question. He is use to seeing his Omi at her house, and when they arrived to an empty house, he immediately began searching for me !

He would run out into the back yard looking for me saying “where Omi go, where Omi go?”

Then he would crawl up on the backyard swing where he and I have enjoyed so many special moments together, and he would sit there by himself, looking all forlorn and  asking “where Omi go? She missin’ ! Omi missin’ !”

He was finally was able to drift off to sleep at Omi’s house that night, content to at least have Omi’s kitty by his side.

I learned something these two days. My sweet grandson Gavin was making huge strides in his progress. He was now becoming able to verbalize his thoughts, his feelings, and his questions. He understood that something was “different” about this situation, and he was doing his very best to express these concerns.

This is a HUGE step.

It tells me he is no longer locked into his own little world, but is dipping his toe into experiences and circumstances outside of himself. He is aware of his surroundings , and more importantly, he is now VERBALIZING his perceptions and expressing the emotions associated with these perceptions and new experiences.

It has only been three months since his ASD diagnosis. The child he was back then compared to the child he is now is one we had only hoped to see emerge some day. Like the lovely butterfly leaving the  cocoon, Gavin is transforming daily before our eyes.

And what a beautiful sight it is to behold ! Something which makes this Omi’s heart VERY happy.

Let the Learning Begin !

Gavin started school this week, taking his first steps toward independence. And his Mommy tasted her first bittersweet moments of “letting go”.. that dynamic, painful process all mothers struggle with. For a lifetime.

It begins at birth. The infant inches his way through the birth canal to finally claim his hard won independence and take his rightful place in the world.

To learn and to grow.

Her tears fell silently driving back home that morning..alone. It felt like someone had taken a scalpel and excised a tiny portion of her heart, leaving an empty hole.

How would he do.. would he miss her? Would he be frightened, confused? Would he

be timid, try to hide? Would he revert to stimming to comfort himself, retreating into his own internal and familiar place of safety?

Worse yet, would he think she had dropped him off, abandoned him, never to return?

Sending a neurotypical child off to school the first day is difficult enough. With an ASD child this trepidation is magnified a thousand fold.

The pain is visceral. How now to comfort herself? And what to do with the aching hole in her heart?

Where there is a void, it begs to be filled. She would soon discover her fears would be replaced with bursting pride and joy as she beheld her small boy’s visible excitement, eyes shining with a sense of personal satisfaction in his achievements.

At the end of the school day she would read the sheer delight and wonder in that bright young face…

And her heart would sing once more.

She, too, learned something this day. She understood that her momentary pain had been nothing less than the catalyst which would propel her son toward a new and inviting world of awe and learning. This pain was every bit as necessary as the birth pangs. Pain is something that she as a mother will learn to accept and endure so that her child might blossom and flourish as he makes his way through this world.

The pain is only temporary while the reward is great….. and lasting.

Her child has entered school. He is eager to learn new things.

Let the learning begin!

As for the mother learning to “let go”.. this too, is a lifelong process. She however, will master this only as she draws her dying breath. Whispering softly her last “I love you”, only then will she open her hand and gently release her child. Not a moment sooner….. her final lesson. The art of letting go.

Seeing not through the Eyes.. but with the Heart

~The child with autism is not ignoring you. He is waiting for you to enter his world~

I wonder how he sees his world. Is it kind? Is it good? Would you be him for just a day, for a minute ……. if you could?

He waits for you to join him, through his eyes the world to see. He welcomes you to sit with him.. without words he states his plea.

“I see the greens, I see the blue. I see the trees, do you? ” As he gazes at the water I wonder how he sees it too.

“Is the sun too bright, the breeze just right or does it bother you?”  He answers not but if he could ..what would he say to you?

I feel the sun warm on my back, the blues and greens I see. The gentle breeze it tickles me, ..but you are here with me.

Don’t go away, please stay!  A little longer, if I may.  I need to tell you what I FEEL.. what my HEART so longs to say.

My world is kind, my world is good… for I know you’re here with me. Will you put your hand in mine, for just a moment.. if you would?

I may not look you in the eye, but I feel your love for me. We see the world both you and me.. we  just see things differently.

How we “see” is worlds apart, and that’s ok by me. It’s not how I “see” but what I feel… that matters most to me.





Starting Pre-school.. and the adults are feeling stupid!

So… this week I go with my daughter Jessica to Gavin’s new school to meet with the “team” and discuss his first IEP. Time to set goals. Sounds easy enough, doesn’t it?

So why do we feel so “shtoooopid”?  

It would appear to be a simple task. We know what Gavin can do, and what he cannot. And compared to his neurotypical peers, that’s still quite a bit. But then again, not so much. Only SOME things. What do “they” expect of him? We haven’t a clue. What do WE want for him? Again, we’re too darn new at this to know just what are considered “realistic” goals.

Sure, it would be awesome to get him potty trained, eat consistently with his utensils instead of those little fingers, and um… eye contact when you’re talking to or with him? Oh yeh ! That would be super cool !!! Some reciprocal interaction on his part would be nice, as would be not insisting on getting as far away from the other kiddos in his class as he possibly can. Oh.. and asking for what he wants or needs, that would totally rock !

Intellectually and cognitively he’s sharp as a tack. (sound familiar?) They won’t have to waste any time teaching him his ABC’s, numbers, shapes, and the usual list of etceteras. Heck, he’ll not only rattle off his ABCs, he’ll even use his arms and hands to form his letters, and yes, can also sign nearly all of them. Obsession with letters? You bet. At just having turned three, the lil’ guy can sit at a laptop and write more than a handful of words already. He has taught himself to spell, read, and write. Wanna see?

Check THIS out !

Atta boy ! Priorities first !

Does the “team” expect us to come up with the goals, or is this something they do on their own, using their expertise and asking our input? Would it not be wiser to observe him in class for several weeks to see how he adjusts, what his interests are, where he excels and in which areas he is lacking? That would make sense to ME, but then again, who am I? I’m not the expert here.

So we’ll toss around some ideas, jot them down, and show up… feeling much like the kids who didn’t do their homework.

Yeh.. it’s been awhile. We didn’t get an instruction manual. Heh.

Gavin will shine, while Mom and Omi will look like dunces. That’s ok. Maybe we’ll just pull up one of those tiny chairs and sit and learn something ourselves, yes?

It’s all a learning experience. As long as we’re learning something, Gavin will learn something. This is good. It’s all good.

We can deal.

But just how Mommy will deal after dropping her little boy off that first day is another story for another day.

Hoo boy.

 

Autism Spectrum Disorder: Awareness is good. Understanding is BETTER.

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Today is Autism Awareness day… the beginning of Austism Awareness month.

It has only been little over a month since my grandson Gavin was officially diagnosed with autism on his third birthday. Less than three months since my daughter and I were convinced this was the inevitable journey on which we would soon embark.

I have learned more in these three short months about Autism Spectrum Disorder than I ever knew existed.

I was ‘aware’.  I had been ‘aware’ for several years. I knew ‘of it’ and some (albeit very little) ‘about it’. Now that the diagnosis has moved in to live with our family, knowing ‘of’ and ‘about’ are no longer sufficient. It’s time to know it up close and personal. How best to do this? Educate ourselves. Learn to UNDERSTAND it. What it is. What it is not. What causes it and how it affects not only the child/adult, but the parents, extended family, friends and acquaintances.

I’m learning all this now at a greatly accelerated speed. Because I have to.

But what about society as a whole? Is there a need for the rest of us to know, and more importantly, to UNDERSTAND? This is something I have given a great deal of thought to recently. Because it wan’t long ago that I was amongst the ones I now attempt to reach. We humans have a natural tendency to fear..or ignore.. the unknown. We may nibble around the edges of a topic, but if it doesn’t affect us personally, it ends up at the bottom of our priority list, placed on the back burner, or gets trashed all together. It’s difficult to establish an emotional relationship with something you don’t understand.

Let us remember back to when we were children, teenagers. The ‘new kid’ is introduced to class.


He looks different. Acts different. Perhaps even speaks a different language. How did most of us react? Did we immediately reach out and befriend him, or did we choose to cautiously stand back until we got to know him better? A rare brave soul might have reached out and embraced him, putting aside all noticeable differences. Most would have watched from a distance (to make sure he was ‘one of us’), perhaps gradually warmed up to him, and made some effort to get to know or understand him better. Some would ‘trash’ him right from the start.. their cruel mocking and taunting crushing his spirit.

And so it remains today regarding people, cultures, concepts, ideas, and even foods. We avoid, ignore, or discard what we don’t know, don’t understand, haven’t ‘tasted’.

Why is UNDERSTANDING so important?

Understanding removes fear. Understanding is the light that reveals truth and chases away all preconceived notions, ‘hearsay’, and assumptions. Understanding opens the door to communication, and communication fosters even greater understanding. Ultimately, and most importantly, understanding leads to ACCEPTANCE.

I was one who was ‘aware’, but had little understanding. I might have been the one who rolled her eyes at the child in the airport or grocery checkout line when he was acting out due to sensory overload, causing him severe physical discomfort. I might have been the one who became irritated at the child who ignored my attempts at interaction. I might have been the one who criticized the parents of the child who was not yet potty trained , was a ‘picky eater’, or unable to feed himself at the table. I might have been uncomfortable around the child who would spin, flap, or walk on his toes. I might have been all of these.

Now able to recognize the behaviors and their meaning, I am no longer so quick to judge, no longer tempted to criticize. I can now spot a child with ASD, pick him out in a crowd……. and smile.

UNDERSTANDING what autism is, why these behaviors exist and how they provide comfort and a safety zone for the child, who due to no fault or choice of his own is forced to live in a world of sensory overload, a child who has no way of removing the excess sensory stimulation, no control over how his brain does or does not process the sensory input, and no control over how or when he will master fine or gross motor skills.. is crucial to ACCEPTANCE of the child, the parents, the differences, and the behaviors.

Acceptance creates a level of trust.

Trust is essential for both the children/adults on the spectrum and to the many families whose daily struggle is certainly difficult enough without having to constantly fear the harsh critique, the actions or reactions of a society lacking understanding of ASD.

My hope is that Autism Awareness Day or Month will soon evolve to an atmosphere of awareness, understanding, and acceptance year round. My prayer is that hurtful looks and remarks will be a thing of the past, not to mention the bullying that so many on the ASD spectrum continue to endure. As adults gain greater understanding of autism, I pray they nurture and teach their children well..that those with autism are different yet no less equal, deserving of as much love and respect as they desire for themselves.

My hope is that we no longer wait until we are personally affected to strive to reach this lofty goal. With one of every 110 children now diagnosed with autism, (one of every seventy boys) we need to ALL do our best to further education, understanding, and acceptance of Autsim Spectrum Disorder. May we ALL be a solution to the puzzle.