Wednesday, March 12, 2008

And the Diagnosis Is......

Anyone reading my blog for any length of time now knows - or I hope they have come to know, to understand - my granddaughter, my little Princess Maya - was diagnosed a year ago this coming April as having Autism. You probably are also aware too that my little grandson - Maya's baby brother - the Duke, Kurtis -was evaluated back in October and determined to have several developmental delays too.

Three years ago this coming June was when we received the initial evaluations on Maya that the team of therapists who did that said she had developmental delays. They told us they were not qualified to do a diagnosis pertaining to Autism -we'd have to have a certified psychologist or a psychiatrist do the evaluation to see if that would be the diagnosis on her but in the meantime, they started a regimentation program for Maya consisting of two therapists - one for behavior/play and the other for speech therapy to begin working with Maya, each for an hour a week in our home. That therapy lasted for two years and two months.

The psychologist who gave us the diagnosis that Maya had Autism also told us that based on his findings, he felt she probably won't have major academic problems once she starts regular kindergarten in the fall of 2009. But his recommendation last April was that we send her to a school about 22 miles from here, four days a week, for five hours a day beginning this past September and continuing straight through -yes, year-round - until September of 2009 when she will then transfer into the kindergarten program in our local school district.

His theory about doing this was because although Maya seemed to be advancing quite well in many areas, she still had a lot of "social interaction" type issues that this particular school program would help her - and us - to address.

And, it has done that - in spades! She is, I am very happy to say, learning by leaps and bounds -all kinds of things!

Today, Mandy had Kurtis evaluated by a doctor to see if they could make an early diagnosis with him if he also has Autism or not -or if his issues stem from other causes. The diagnosis is now in on Kurtis and he too is "on the spectrum" with the same basic diagnosis as Maya - PDD-NOS.

And, although I understand fully why some people upon learning that both these sweet, adorable, simply gorgeous little people have Autism may tend to say things like "I am SOOOO sorry to hear of that," or "My, what a shame that they are both Autisic," or "What will you do, what will become of them?"

I understand the intention behind saying things like that is that it is meant in the best possible way. But you see, I don't see it quite the same way.

Now I won't lie to you and tell you I wouldn't rather my grandkids DIDN'T have this diagnosis because sure, I'd rather they NOT have to struggle more than the average kids do to learn basic things, to be more readily accepted by their peers, by adults too.

But, the thing is - because they have this disorder does not mean it is the end of the world as we know it for them, for their parents, for their siblings, for me! To my knowledge, Autism is NOT a death sentence but things like cancer, leukemia, muscular dystrophy, nephritis, juvenile diabetes and a whole host of other things often are just that - a road straight to an end of life. No, not always -but yes, many times it is that - you know it, I know it and it bites, big time.

But this is not that, not by a long shot!

It is a whole new learning process for these kids though - and also for me, for their parents, siblings and for others who may come in contact with them over the years too.

There is a saying -"If you've met one child with Autism, you have met ONE child with Autism." It means simply that you can't judge each child because of that particular label. Because these kids are first and foremost, kids -like all other children in many, many respects. They just absorb, learn and deal with things somewhat differently than what our perceptions tell us is the "norm."

Granted, there are some children with autism who will require life-long care due to the type and severity of the disorder, but is that the "norm" of autism? No, not really. But, it could be the "norm" if people don't learn about this disorder and how to help EACH child reach their capacity to learn, to be able to exist in our world as happy, productive individuals.

The more I see with my grandchildren, the more I read, the more I learn, I wonder how many people I have known, grown up with perhaps, gone to school with too, who may have been labeled back then as "different" or "strange" or even determined by teachers and/or family as being mentally challenged, retarded? This disorder back then - 50-60 years ago -was relatively unknown as to how to work with children we would now deem as autistic and as such, they frequently were shunted aside, institutionalized, not given the type of therapies needed to help them to adjust to society, as a whole. Sure, some managed to go through school, even college perhaps, if they were high functioning or Asperger's but because of some of the quirkiness that often accompanies Autism, they may not have been as accepted to society as they could or certainly as they should have been, thus making their life not as easy as it could have been at times. Children are nasty little individuals you know at times and often they love nothing better than the chance to tease, torment, even bully others who don't learn, don't speak quite the same as the majority does.

So please, don't think of Maya and Kurtis as being some kind of strange child with a whole host of problems he or she will never be able to cope with as older children or as adults because that just is not necessarily the truth. With therapy, education - not just for them -but for us too - the odds are much more in their favor to grow, learn, enjoy a full and very rewarding life along the way.

My daughters, my son and I last year took part in a Walk for the Cure Autism Now Foundation and we are currently in the process of setting up our team for this year's event to be held on April 12th in State College, PA. I don't have all the things in place on our webpage as yet for this year but hopefully, within the week we will have that done, in order, up and ready to accept donations or sponsors of our team or individuals on our team. When that is ready, I will be posting more data here so if anyone would like to donate in our team's name or sponsor us or one of us - whatever - any and all donations would be very much welcomed and extremely appreciated!

So, be aware over the next month, I may appear to be somewhat consumed - aggressive even, if you will - about this particular cause, begging for money too. Yeah, I will be that, I will do that and I freely admit to that right now, so consider yourself forewarned and forearmed.

But please keep in mind - whether you know and understand about Autism, think you do, or don't know diddly squat - there's no time like the present to learn more! Whether you believe as some do that Autism is caused by vaccines (I don't), or by diet (I don't) or if it is simply what it is regardless of the cause, please don't be put off by the terms used by many of "Cure Autism Now" because it is a condition that lasts forever and as such, really isn't "cureable" in that sense. But to "Cure Autism Now" to me, to my family, means two things: one is to learn as much as possible about what may cause this and the other is to learn as much as possible about finding keys to unlock the doors and thus enable those with the disorder to learn! Simply that - to learn! Whatever is necessary for that child, each child, to be able to lead a life as full and rewarding as is humanly possible!

Here then is a picture of all three of my Grandchildren - Princess Maya, Prince Alex and Duke Kurtis. Aren't they - all three - just absolutely beautiful, though?


Linda said...

Excellent post with some very excellent points about autism and people's perceptions of it.

Unfortunately my best friend's youngest son falls into the category of one who will never be able to live independently and is currently in a group home situation that still has its problems. It breaks Cyndi's heart to have him there but he's at the age, and size, where neither she or her husband can handle him anymore as he does tend towards violent outbursts from time to time.

I wish nothing but the best and long, happy lives for both Maya and Kurtis and you can bet I'll contribute something when you start begging for money!

Sandi McBride said...

They are absolutely gorgeous and I see one very proud older brother...protective it seems to me. The way I understand it there are level of autism and it seems to me that your little ones are doing quite well, and I know you are proud of them! ABC on GMA has been doing quite a bit on Autism and lots of info, which I'm sure you know...Igo in on the ABC site to see what's new about once a week. Has spring made it finally? The sweetie pies look awfully springlike to me!

Beth from the Funny Farm said...

Awesome post! Those are beautiful and handsome children.

SnoopMurph said...

I adore that last picture. Just love it.

Thank you for bringing more awareness to autism and for presenting it in such a positive light. It is easy as a parent of a little one with autism to be discouraged, but you always post something amazing from Maya or Kurtis and it gives me a huge boost.

You can be sure that we will be walking for autism later this year and I will be happy to support you and your awesome team in the coming weeks.

Please continue to post the good and the real.

Dottie said...

Beautiful grandkids you have! I know a few with kids that have Autism, but I myself really don't know a lot about it. I enjoyed this post.

Travis said...

I learned a little more about the degrees of autism from this post.

Friends of my family have a 30-something Down Syndrome child. She's a joy to be around, very loving and quite intelligent. She is self-sufficient within her community, holds a job, and is studying at a local community center.

She and her mom have a tremendous relationship. She was raised like a "normal" that I mean that her disability was recognized and accepted, but never used as an excuse.

I can remember one time when the two of them were having a mother-daughter argument about something. This was years ago when J was about 16. Her mom said something about J behaving like a dumb teenager, and J fired back with "I'm not a dumb teenager Mother, I'm a retarded one!"

It broke everyone up.

Anyway, sorry to go on and on but my experience knowing J and her mom taught me that there's no need to tiptoe around a challenged individual. They may be different, but that doesn't make them less.

ALW said...

Hey Gram...I love YA!

Keith said...

What a great post Jeni.

I do know that there are low functioning and high functioning types of autism and I saw that when I went to work with autistic kids at a camp for a week.

I would also like to mention a boy named Sam. He has went through school with my daughter from first grade to high school graduation. The interesting thing about him was that he had a caregiver with him all the time. He was in the band in Jr. High and he played the bells and cymbals. His caregiver, who was a female, probably around 35 or so at that time, would point when he was to clang the cymbals or hit the bells.

I had the honor of watching Sam graduate high school with my daughter and the entire class of 2007.

Maya and Kurtis are a blessing. Keep encouraging them as you are a big part of their lives.


Stine said...

What a beautiful post, and the photo is gorgeous! That saying about knowing one child with Autism says it all...
You can't generalize, any more than you can with any children, with or without a disorder.
How they must love you, Gram!