Saturday, April 02, 2011

Light It Up Blue!

If you aren't already aware of this, April is Autism Awareness month and yesterday and today have been marked too as days to "Light It Up Blue" to show everyone your awareness about autism and the prevalence of this disorder in our world-wide community.

As many of your are already aware, I am a strong -and extremely proud -supporter of the Autism Awareness campaigns. This has come about because not one but two of my grandchildren have Autism and their mother (my younger daughter, Mandy) and I -along with my other two children (Aunt Carrie and Uncle Clate), my older grandson, Alex and a whole host of other relatives as well as most of my neighbors and friends - have been in the learning realm about autism for the past almost six years now!

Eight years ago this spring, I was in my own little world that consisted primarily of a majorly blue funk -caused by unemployment, depression and an illness that began the task of turning my life around -a full 360!

I remember all too well the day in February of 2003 when Mandy came to me, so excited she could barely speak and shoved this thing in my face with instructions from her to "Look at THIS, Mom! LOOK. AT. THIS!

What the heck was that thing was the question in my mind and it took a bit for me to wrap it around me that she was showing me a home pregnancy test that was showing positive. No wonder she was so exhilarated! I should have been able to relate to her feelings having gone through the early signs of pending motherhood a couple decades earlier.

But I couldn't think of this coming event then in a positive light the way I had when I knew I was pregnant and especially how excited I was when my older daughter told me the news that I was going to be a Grandmother either.

And that fact depressed me even more than I already was. Not only did it depress me but it gave me this humungous guilt trip too that I rode for the next seven months or more as well.

All I could think of was how in bloody blue blazes are we going to manage the added work and expense -especially the expense -of a new baby in this household where we were already majorly strapped and could barely get by as it was. That, plus my concerns about what might be wrong with me that was causing me to feel so terrible, in so much pain most of the time and well, although I smiled and tried to feign excitement over Mandy's news, in private, it just reduced me to tears whenever I would dwell on the thought of a new baby.

Sure wasn't the way I had figured I would react to becoming Grandma again!

But over the next so many months, after being diagnosed with colo-rectal cancer and having chemo and radiation for six weeks, followed by surgery, which was supposed to be followed then by another round of chemo but that got delayed a bit because of some other issues I had developed after the surgery -like two herniated discs which made it darned near impossible for me to move around, even to sit or try to lay down and I was in pure misery.

After the doctors got me started receiving physical therapy for my back issues, eventually they also began the follow-up chemo therapy which meant that one week out of every month for the next seven months, I would get chemo daily.

To say life was a bit wild and hairy from June through October of that year would be a bit of an understatement -more so for Mandy though than for me. She was still working about 4 days a week, plus trying to juggle in with her work schedule all my therapy appointments, my chemo appointments PLUS her own prenatal appointments and believe you me, that was no easy task at all for her to try to keep things in order and getting both of us where we needed to be on time!

But finally, October rolled around and with it, on October 18th of 2003, my first granddaughter -Maya Kirsten -was born. By that time, I was feeling a good bit better and the day after Maya's birth, I actually drove, by myself, over to the hospital in Dubois (about 44 miles, one way -and the first time I had been able to drive further than a 20 mile trip alone too) to meet my new granddaughter.

Trust me when I tell you this -I was somewhat excited over the baby but still a bit on the low-key side. However, once in the room and as soon as Mandy handed her daughter over to me, for me to get a really good look at her and feel her softness, the warmth, smell the newborn baby scent, all the trepidation I had held deep inside me for the past 7 1/2 months just melted away!

I remember Maya looked up at me and as I gazed at those eyes in that beautiful little face, I was totally spellbound then and there and forever more by this little creature!

Of course, she was absolutely perfect in my eyes and also to her mother and all the rest of the family around us too. We all basked in the joy of having her with us as she made life completely worth living then!

As she grew though, at about 6-7 months of age, my older daughter and I noticed something a bit off with Maya and that was that she pretty much refused to make eye contact with us. That was our first indicator there was something amiss. Then it was that she seemed to not hear us so maybe she had a hearing problem but I ran my own little private, non-scientific test on her by turning on the TV set using the remote control. The remote made a very, very tiny sound -VERY tiny -and yet, she knew before the picture came up on the screen or the sound came through that the TV had been turned on and she was up, standing in her playpen, waiting to see what pictures would unfold before her. Yep! She had heard that tiny, tiny noise so I knew her hearing had to be fine!

Then, as she began walking, we noticed she pretty much ignored her toys as she would just as soon pick up a piece of scrap paper and run through the house, carrying that like a little flag for hours on end. Hmmm. That got us to thinking again that something just wasn't right.

I had made mention a couple of times to the pediatrician about my concerns there but she didn't seem to pay any attention to what I said until finally, when Maya was about 19 months old, she recommended we take her to see a specialist in Dubois -to have her hearing checked and also, she referred us over the the Healthy Beginnings program in Clearfield. (I think that's the name of it.)

The people who worked in this program came to the house and did an evaluation of Maya -which showed she had numerous developmental delays but the treatment they would recommend wouldn't be confirmed until we got the test results back from the ear doctor. When he said there were no problems with her hearing, the team that had evaluated Maya immediately set in to schedule two therapists to come to the house to work with Maya a couple times a week. First, there was a behavior/play therapist and then, a speech therapist and these two young women became and integral part of life in our home from then until Maya was almost 4 years old.

And then, we only got about a two month break in the therapist action because by then, Kurtis Maya's little brother who arrived 2 1/2 years after her, had been diagnosed as having autism too so, the therapists just stayed on working with him then. Plus we got a third therapist with Kurtis too -one for occupational therapy!

It will be 6 years in June since the first therapist arrived on our doorstep and today, we still have therapists who come to the house and work with the kids. Something for which I will be forever grateful as the work these folks have done with my grandkids is truly remarkable and without them, I have no clue what on earth Mandy and I would have done, how we would ever have been able to help Maya and Kurt to learn to talk, to learn to play productively and now, how to socialize too with their peers!

I realize that with my grandkids we have been extremely fortunate in that first off, we got intervention and therapeutic services done quite early on for each of the kids -and that is really of utmost importance. Plus, we are fortunate too in that Maya is extremely high functioning -actually is Asperger's Syndrome -and Kurtis too is relatively high functioning as well.

Just as in any other family, the differences that exist between each child -well, the same applies to these kids too. They both have their individual strong suites and each also has their areas of differences -or perhaps one could say their "weak" spots. But both of them are today doing fantastic.

Are they cured? Oh Hell no! Will they ever be cured? Probably not as I don't know of any "cure" that exists for autism. It's a factor of their lives that they are learning how to cope and contend just as we are learning too how to cope and contend with some of their quirky ways.

But the bottom line is, they are both just beautiful little people and I adore the living daylights out of both of them! They are smart, they are crafty, wily, mischievous, bratty, and some days, just plain bad, ornery and obnoxious too -just like their mother, aunt and uncle all were way before them!

In that respect, they are just like any other 7 or 5 year old -but just different usually in their perceptions of things and many of those perceptions, we can work on bringing about change for them so that they will then understand about life and the ups and downs it brings to all of us but many times, more frequently to them.

And finally, I wouldn't trade these two kids for love nor money, not for all the tea in China or anything else -and I sure as heck wouldn't change them either. Well, maybe a little bit where the sibling rivalry and bully factor kicks in with Maya as she loves to boss Kurtis around and he is developing just enough independence factors now that he really doesn't like when she does that to him.

Just like any other kids, really, in those age ranges.



Maggie May said...

I really did appreciate reading this post and was interested in everything that you said.
Of course you love your grandchildren and would never part with them! Nor would I with any of mine!
I'm grateful for your good advice on my last post and very pleased that your difficulties have worked out for you.
Maggie X

Nuts in May

terri said...

I can't imagine the worry you must have felt as you began to notice something wasn't quite right. That must have been so difficult. But how wonderful that there are specialists available to help the kids learn the things they need to learn to get by in this big world. And yes, they are adorable kids and clearly they are so typical in many ways too.

Jenn said...

I was number 3267 to light a blue light (that link on my blog).

Also a link to a great book on the subject.

Love you Jenni

Anonymous said...

Hi, Jeni -

Sorry I haven't been around in a while. I'm glad I came by to read this touching post. I will make a contribution to the Autism Society with your grandkids in mind.