Sunday, March 30, 2008

A Busy Month

It's hard to believe that Tuesday will be April 1st! Yep, good old April Fool's Day. Time was when I was much (MUCH) younger and working, my friends at work and I would often scheme to prank each other or even better, to catch our boss -the really great guy to work with, work for, "Mr. B" with some kind of trick. He was usually on the prowl with lots of tricks up his sleeve for us too though so it wasn't a one-sided deal there. Nowadays, my mind just doesn't see to be able to function along the practical jokes line -or at least not like it used to at any rate. These days, my so-called practical joking tends to be much more of a "spur of the moment" type situation that just pops up before me and is too darned good to let it slide -regardless of what the date may be.

But although the month of April may begin with a day earmarked for fun and games and pulling people's legs and such, did you know the month of April is also designated as a month dedicated to a very serious thing too?

It is, you see, Autism Awareness month!

Those who read my blog frequently know that both my two little grandchildren who live with me (or do I live with them?) are autistic. Maya, age 4 1/2 was diagnosed a year ago the end of April as being on the Autism spectrum - PDD-NOS and Kurtis, her little brother, was diagnosed two weeks ago. Initially, he too was given the spectrum diagnosis of PDD-NOS too but this past Wednesday when Mandy had an appointment with the people at the agency that delivers the therapy and preschool services for Maya and Kurtis, the psychiatrist who had given Kurtis' initial diagnosis changed it to straight Autism. He does have a lot more "issues" than Maya had when she first began receiving therapy at 20 months of age. As a result, Kurtis has been getting behavior/play, speech and occupational therapy since being evaluated last October as having developmental delays but now, with the autism diagnosis, he will also begin getting ABA treatment, Floortime and will also have a TSS (wraparound aide) to work with him in conjunction with the other three therapies he has been receiving.

The agency is taking a VERY proactive approach to working with him and I am very happy to see them doing that too. Working with autistic children to help them learn, adjust, bring out their ability to function to the highest degree, is no easy task and it's nothing that provides changes to the child (or the family) overnight either. It's a long, hard, grueling road ahead for him -and for Mandy -as well as for all the rest of us here as we try to accentuate the positives we see him doing. And there have been a few so far, to date too -little things he does -like occasionally now when we speak to him he might just look directly at us and hold that gaze for about five to ten seconds or like Saturday when we'd been out for a while and as Mandy came down the sidewalk with him, she left him walk and when he got to the front stoop, he actually tried to make the step up to the little landing there as well as the step up at the front door too. It's the little things like that, things he hasn't done before and that people tend to take fore granted that a two year old would have been doing long before now, but he hasn't -so those are two big steps we've recently seen in him and things like that give more hope that he will be able to keep progressing, moving forward.

We know too now that he comprehends a lot of things we say to him. When he's running around the house and heads towards things he shouldn't be getting into or when he pulls things off the coffee table and dumps them on the floor, if we call to him and tell him "Ah-uh-uh-ah-uh" as a little warning that he's not supposed to do that, sometimes now he will stop that behavior for a minute or two and also, more often than not, he starts to cry too. He doesn't like the different tone of voice we tend to have when admonishing him which tells us he's picked up on that as not being a good thing then. Little things, baby steps -going down a road we've already traveled not too long ago with Maya and now, here we are doing that all over again.

But the end result is so worth the work, the effort. Seeing how far Maya has come, how quickly she is now picking up more and more daily -sometimes it seems her learning is advancing hourly, it comes through so fast some days now, you know. Just wait till next year at this time and when I tell you then -as well as throughout the coming year - of the little things Kurtis is achieving, won't it be quite a great day to be able to look back and see how he's advanced too in that time?

In recognition of Autism Awareness month, so far all three of my children, along with Maya, my older grandson, Alex, older daughter Carrie's fiance, one of Kurt's therapists, a good friend of ours from church, Mandy's good friend here and another couple who live nearby and have a son about a year younger than Maya who is autistic and I have all signed up to walk in the Autism Walk on April 12th over in State College, PA. We've already raised enough money that we have qualified now for $500 in matching funds through Thrivent - a church social welfare agency -that means right now we have over $1,500 in funds given in support of our team. And, we still have two weeks to go too to try to get more donations through signing up more people -hopefully - to walk with us, through contributions to our team given by anyone who wants to support us, our team, in that manner as well as from "Canning" with the various cans Mandy and my son's roommate have fixed with some really cute decorations to garner attention to Autism and the walk. We'd like to raise $2,500 if possible -another $1,000 in addition to what we have so far so if you're reading this and haven't already donated to support us, here's the website where you can go to make a contribution if you'd like to do that. There are also instructions on the website whereby you can mail a contribution directly to Autism Speaks if you don't like the idea of using the online contribution set up. All we ask is if you do that, please indicate that you want your contribution to be applied in support of our team - the "WE ARE for Kurt and Maya Team" in the April 12th walk in State College, PA -where Penn State's main campus is located.

You can also go to that website and search for our team -it's on Page 2, almost at the bottom of the page - and you can follow our progress too towards our Team's goal.

You know, after the walk, I'll be posting pictures then of our team walking, having a good time together, in our effort to raise more much needed funding for Autism research and training.

Throughout the month too, I am going to try to post more photos too of Kurtis and Maya with each post I make, as well as trying to tell our story -what signals were there that alerted us to the fact that both kids had this disorder.

I also want to do this as my own effort to explain that a diagnosis of Autism need not be thought of as the end of one's particular world -just a change of direction perhaps, here and there. I'm not trying to make light of the situation because without the therapy Maya has and continues to recieve and which Kurtis has just begun a few months ago, they might be able to function somewhat as they grow but with the therapy, they will have increased the odds in their favor at least ten-fold.

It isn't however a disorder that can be cured -they both will have it all their lives. But, in a way, it is like a child being diagnosed with juvenile diabetes and they have to learn how to manage their dietary needs, along with finding the correct dosage of insulin, keeping track of other things that can help or hinder their progress, so it is with autistic children too. In both instances, the parents, the child, the medical community, has to find the key - the right key - to enable the child to grow and to flourish. And that's what the therapists, the ABA treatment, the Floortime programs and the preschool program here will do for Maya and Kurt - help them (and us) to find the key to open each door and thus, enable the pieces of their own particular puzzle to be put together. Because that is, in essence, what autism frequently is to the child, to the parents and family, therapists and doctors alike - a huge puzzle with pieces strewn all over the place -sometimes hidden behind doors and alcoves in the mind and body just waiting for that particular important "key" for each child to be found.

If you would, please tell others you know - bloggers, family, friends, co-workers -about my blog and ask them to visit and perhaps donate to our team or even to take up a collection in those circles to submit to the Autism Speaks organization too. Just spreading the word about Autism and the signs so more parents become aware early to get the help so needed for their children as quickly as possible, would be something extremely beneficial.

And above all, don't perceive these individuals with Autism as being someone to fear, or to pity either. For the most part, they are all beautiful individuals - key word here being "individual" with a different way of learning than the rest of us in society generally may have. They're bright, playful, fun-loving, cheerful (usually), cuddly, snuggly, lovable people in need yes, but of help in just learning how to learn and with the same basic needs as each and everyone of us has too!

If you don't believe me, follow along here with me and I'll tell you more about my two very, very special sweethearts as well as showing you too, hopefully, the changes coming about in both of them day by day.

See for yourself, won't you?

Maya and Kurtis -both showing off the happy side they each frequently have on display here -and when we go out too!

You can't see the autism in them -only if you are around them in person would you come to realize the differences they have from other children their age.


Stine said...

Oh, they're so sweet!

Beth from the Funny Farm said...

Good job on raising the awareness of autism!!

Linda said...

Sorry I haven't been by to visit much in the past week, it's been a hectic one for me what with having to meet royalty and all!

I bet you are going to do a fantastic job raising awareness for autism this month - they've got one heck of an advocate in Grandma Jeni!

Great pictures!

Palm Springs Savant said...

I can't believe its April already. where is time running to?

Great post on this subject, I am glad yuo put it out there. teriffic photos by the way...

Shelby said...

I can't believe it's almost April either. Time rushes by faster and faster.

This is wonderful posting on such an important subject, and near and dear to you as you have such special souls in your family and in your home with you all the time.

Your love for them is so evident. They are fortunate to have you.

Have a great week !! And happy almost April :)

Smalltown RN said...

Jeni...great post...very informative...your grandchildren are darling...and as they learn so do all those around them....they do bring special meaning to life and make us look at things a bit differently....

I wish you much success on your walk and your fund raising..I really look forward to seeing the pictures....

Dianne said...

Wow you raised a lot and the matching funds is great.

I'm really looking forward to the race pictures.

Hugs to all :)

Travis said...

Early awareness and detection is so important to getting a good start of finding those keys for autistic children. As you say, you can't see the physical marks of autism so you have to be aware of the internal signs.

Thanks for keeping us aware, and for sharing your pride in these adorable kids.

SnoopMurph said...

Excellent post. I'd like to link your blog for my Autism Awareness Each Day blogs...with your permission. You have a lot of positive things for parents to read!

Go Kurtis and Maya-keep up the progress!

Sandi McBride said...

As I have commented before Jennifer, your Grandbabies are just can see the intelligence in their faces...I've often heard that Children who are afflicted with this disorder fight hard to come out of their private world to visit with us in ours. And I've noticed a sudden upsurge in the media about this situation, with what explanations they have to offer, pro-offered to us as they get it. This can't be considered anything but a good thing. I can tell that you love your G'babies so very much...what's not to love?
hugs my dear the lovlies and to you

Keith said...

What an awesome cause. Good luck in the walk and go team "we are for kurt and maya".