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.~

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7 thoughts on “Transitioning from Alzheimer’s to Autism (part II)

  1. You brought tears to my eyes but not for the reasons you might think. It’s because Jessica is so lucky to have you for her mother, to lean on, to share with to talk to. My parents were too old and frail to handle the news of their only grandson and still do not know of his autism.

    I went through everything that you and Jessica have gone through – it’s all very familiar. Not speaking the “a” word – thinking the quietness was refreshing, the toe walking cute…

    It definitely shakes one’s world when first finding out. Gavin is a beautiful boy. He is lucky to have you both watching out for him and for each other. Obviously, you’ve found the best support tools for the emotional aspects of learning Gavin’s diagnosis -which are blogs and Twitter! This community has been amazing to me and I could not make it without support from all of you! Hope to see you writing often. I am enjoying learning more about all of you!

    1. I’m so sorry your parents can’t get involved, but I do understand. It must be doubly sad for you. 😦
      And yes, the twitter community has been a Godsend !!! Love it. 🙂

  2. I followed you from Karen’s. 🙂
    It was one of the hardest days of our lives with our son to have the diganosis, but for us it was also a relief as we knew, just knew, something was different. He’s 7 now and I’m amazed to look back to see how far he’s come–and how far Gavin will come too. With time I’ve become OK with our diagnosis and I love him just how he is/as he is. With time you’ll see how great life on the Spectrum can be. It’s not without challenges (I think that’s why we’re all out here!) but it is all totally worth it!

    1. Thank you, Lizbeth! It’s been quite a journey the past 5 yrs…from one “A” to another. Shew! We are okay with the dx. now, just learning the ropes and getting all the good tips and advice we can! One day at a time. Thanx again for the reply and support ! 🙂

  3. wow this post brought back a lot of memories for me. Deeds was also a great baby. My mom used to tell people that he made good babies look bad. 🙂 Quirky since birth, but our lives are richer for knowing him.

  4. Although there are no clear reasons that what causes Autism or Alzheimers. But your story sounds very similar to one I know. My son and his maternal great grandmother are victims of A words disorders. They might be genetic.

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