Tuesday, April 02, 2013

Light it up Blue!

Today is a day which has very special meaning to me -World Autism Awareness Day!

Those who I've been blogging friends with for a long time now -going on seven years come this September -know that I'm a Grandma and now, also a Great-Grandma too. I have a grandson, who will be 16 in August, a step-granddaughter who is now 21 and with the birth of her beautiful little baby girl two months ago yesterday, gives me the title of Great-Grandma. My son's girlfriend has three boys -twins who are now 8-year-old and her younger son who will be 5 in September and who are like grandsons to me. Then my younger daughter has two children a girl who will be 10 in October and her son, who will be 7 next week.

And it is because of those last two grandkids I mentioned that World Autism Awareness Day holds a very special meaning to me as both those kids, Maya and Kurtis, have autism.

I won't sugar coat anything here about things in this household and try to imply or impress anyone that trying to raise and cope with two children with autism is an easy-peasy as apple pie kind of thing because, truth be told, it isn't!

Much as I do love and well, let's face it facts being what they are, I adore Maya and Kurtis, really I do, but they can at times be royal little pains in the behind, just like any other 9-year-old or 6-year-old! Boy, can they ever excel at that!

I would also be lying too if I said that I have never wished at times that they didn't have autism because yes, I have done that and I'm pretty sure their mother has had moments too when she wished that Autism wasn't a prime factor for so many things in our lives. We'd both be liars for sure if we ever tried to deny having thoughts like that.

Today though, the realities of my grandson, Kurt and the autism factor and I really came face-to-face, up close and very personal you could say, as today my daughter received a packet from Social Security of what seemed like a kazillion questions pertaining to Kurtis and his abilities or more accurately stated probably would be his inabilities to function the same as is expected from otherwise "normal" 6-year-old boys!

I didn't count how many questions there were but there were -trust me -a whole lot and at the end of those questions was this very tiny block where the person filling out the form could write in further comments, expressing advancements he has made, all kinds of things that my daughter wanted to say about her son, things that are and were and will be important about him, his issues now and for the rest of his life but definitely not near enough space there to explain further anything.

I told her if it were me, I would just fill in there that he has a diagnosis of classic autism and that by itself should actually answer their questions.

I know it doesn't because he is that -yes, in that he does have autism but he is so much more than that -and yet, at the end of the day, it still shakes out to "He has autism!"

I think back though to when he was a baby and we noticed fairly early on many of the same things as had been present in his sister before she began receiving any kind of therapy and well before she was actually diagnosed as being on the spectrum. Her diagnosis though differs from her brother though in that she is PDD-NOS -which simply put means Pervasive developmental disorder -not otherwise specified -and that probably really tells you very little about her and her diagnosis. Suffice it to say, for her, it just means that she has many of the characteristics that describe a person with autism and it can cover a lot of turf with those few letters of the alphabet.

They both have a lot of characteristics/issues alike -sometimes one has more severe issues than the other and sometimes, it seems that they flip-flop too-back and forth! That may just be my interpretation of things on a day when there are more problem areas than there are at other times too though.

Not every child or adult with a diagnosis of autism have the same symptoms or problems or areas that are issues for them. Just as each of us who are considered to be "normal" are each different individuals, so it that truer yet with people who have an autism diagnosis. Each is different!

 I remember vividly though when Maya was first learning to walk and once she got her footing, the walk soon turned into a run in which she seemed to run and skip simultaneously and it always looked like she was kind of running sideways! She was also a "Toe-walker" but then, I recalled when her mother was little, she too was a toe-walker as is my former mother-in-law, who is now hitting close to 90 years of age! So, is that a classic symptom or not of autism -often it is, but it's just one of many things that can and often do come into play.

I don't recall ever being afraid of the diagnosis given to Maya or worrying about it because in my mind it is not a disease, but a disorder and through therapy, behavior modification, other types of stuff like that, she has come a very long way. She's in the 3rd grade, does very well academically and has a memory often like a vice! What goes in there gets locked in there! And sometimes the things she remembers just completely boggle the mind when we find out "Hey, she remembers this or that! Incredible!" because it can be things that you just would never expect a small child to recall!

And, in many respects, Kurtis is the same way -remembers things that you never expect him to recall. He has abilities to plan and put together things with Lincoln Logs and/or Legos that totally boggle my mind when he shows us some of his "engineering marvels" and explains to us what it is exactly that he has built and what it is for, could do in the real world, etc., etc.

But ask him to button his shirt, pull the zipper up on his fly or his jacket and he turns in to 2 hands, each with 5 thumbs! Tie your shoes, Kurtis -another thing that is too high on the expectation list for him to accomplish at this point in time.

His vocabulary is often very good and strong in that he will frequently use very big words and use them in he proper context but he doesn't really comprehend the meaning though of what he may have just said! He's doing very well too academically in his age category and grade level -first grade -but he does have a lot, a whole lot at times -of behavior issues. He recently as diagnosed though as also having ADHD and is now getting medications to help him to focus better, to give him a better way to direct his energies and so far, it does seem to be helping.

Almost 5 years ago though, he had no vocabulary at all. NOTHING! Could not even express to us that he wanted Milk until finally, one of his therapists managed to teach him sign language for the word "more" and he was able then to indicate to us that he wanted More of the milk or other things in his surroundings. It took what seemed at the time like forever to wean him from a bottle to a sippy cup until in the process of doing that, we discovered he had to lie down to drink as he didn't have the muscle tone needed to sit up and hold a bottle, much less a sippy cup upright and drink from it!

Today, most often the first words out of his mouth when he gets up in the morning, when he comes flying into the house as he returns home from school will be "I want chocolate milk!" His world totally revolves around that magical substance, chocolate milk. It solves many problems and cures so many hurts, you just can't imagine the power of that substance until you see him in action with it!

But those are just a few of the things -a very few -about Maya and Kurt and they don't come near to describing what they are really like!

As far as I am concerned, they are absolutely perfection personified! Yes, I am an adoring and doting at times, Grandma! I confess to that for sure! I don't know what my life would be without them and their often quirky, sometimes annoying, frequently mischievous ways!

I do know though that life without them would be very dull, lacking in color, contours, and so many other things that they bring to the forefront here and keep things moving and very, very interesting.

And it's that part that is these two that I would never want to change!

Although, I definitely will say this -I could live quite contentedly though without the meltdowns that crop up from time to time and often over the things you would think least likely to set either or both of them off too! That is just one great big "Go Figure" for sure!

All I want too from others is that they see these two for who they really are and accept them and their talents -which are many -as being valid and often quite outstanding too!

I can't ask people to understand the wheres and whys and what ifs and such when their behavior takes a bad turn but try at least to understand the wiring in their system may have just taken a bit of a short circuit and with a bit of comforting when needed, and yes, even discipline too when necessary, they will turn into a little angle then often, right before your eyes.

So many of the traits they have are no different in many ways than were the things their mother did, or their uncle or aunt too when they were growing up but with Maya and Kurt, often there is this little twist at times to make their actions and reactions just be a trifle off center from others.

Do I have expectations for a great solid future for each of them? I pray for them daily that they receive the therapies they need to continue to grow and mature and eventually become a very worthy contributor to society.

Some things along those lines though of expectations may take them just a bit longer to achieve than it may for others but there will be no giving up on either of them to strive for them to be the best they can possibly be!

Some may say or think that this is dreaming the Impossible Dream but hey, if there's one thing I've always been, it's a dreamer and what better thing then to dream about but for them to have a full and happy life.

I can happen, ya know. Really, it can! You have my word on that!


Maggie May said...

I also have written a post concerning our Easter Holiday problems of Autism and the way it gets somewhat harder to get a teenager to do something that he obviously doesn't want to do but holds up the other members of the family to ransom, if he doesn't.
You wouldn't change the children but sometimes curse the condition!
Maggie x

Nuts in May

terri said...

Thank you for writing more about and explaining the things that make up the world of an autistic child. I'll admit, I don't fully understand what autism is or does to a person. And like you said, it's different for each person. I feel like I know your grandkids a little bit better now and understand their triumphs and challenges. With such loving family around them, they are sure to grow up to be successful and happy.

Suldog said...

God bless you, Jeni. You're one of the good ones. It's folks like you who make life a nice experience, and I'm sure those around you would concur (at least most of the time!)