Saturday, April 04, 2009

Another One Bites The Dust!

April - Autism Awareness Month!



Boy, do I ever need some heavy dosage of Ben Gay!

My legs and back are stiff, stiff, stiff right now -for sure -but I feel good anyway because it was all for a darned good cause.

The family -older daughter (Carrie), her fiance, Robert, my son, Clate, Mandy, Bill, Katie, Maya, Kurtis and I -along with our minister, Pastor Carrie, Denise -a friend from church- Mandy's friend Tracy and her little girl, Kara (who is also autistic), Kurt's BSC, Renee; Kurt's Speech Therapis, Mandy; Becky, a teacher at our school; Randi, Kurt and Maya's Floortime therapist; Samantha, Kurt's TSS, and Gail and Joe, our next door neighbors all showed up today to walk in the Autism Walk at Penn State University!

It was a cold -very nippy -and grey day for most of the walk with lots and lots of wind! BRRRR! Everyone was bundled up, that's for sure. Kurtis had a heavy blanket over him in his stroller and hugged his "Bear" -probably the most valuable thing he owns -to snuggle up to by his face and neck too. Maya had a fleece blanket over her as well as winter jackets and mittens too on both kids and she was in a large three-wheel type stroller we borrowed for the day. But both of them should sleep really good tonight from all that brisk fresh air they were exposed to during the walk. The only time Kurt fussed was when I had him in the stroller and was in line to get the tickets for my son's and my registration and our tee shirts while Mandy had to be in a different line to pick up the registrations and tee shirt stuff for herself, Bill, Kate and Maya. And the only reason he was fussing -crying, real tears even, "Unny, Unny!" was because Mandy was out of his sight during that time.

I was disappointed though that we weren't able to get any pictures this year of the kids with the Nittany Lion! Rats! Last year and two years ago, I got some good pics of the Nittany Lion at the walk.

My son, Clate, participated in the 5K run this year. No, he didn't win. Didn't even do a place, show or draw -I guess that's the terminology for racing isn't it? Well, he did show -as in he did show up and ran and didn't fall during the race, didn't fall as he came to the finish line in a heap of bones from pure exhaustion. Considering he hasn't done any running in a long, long time, I'm really happy that nothing happened to him and they didn't have to call for an ambulance or anything to whisk him away to the E.R. from over exertion or anything like that. LOL

The son-in-law, Bill, was really surprised at the number of people at this event and especially the number of children present too. Not as many as last year or the year before with respect to the children there but no doubt that was due to the cold weather today. Mandy said on the way home that she thinks he just had no concept before today just how many families are affected by this disorder.

My neighbors, Gail and Joe, and I walked together for the bulk of the walk. That is till I fell a little further behind them as I am a VERY SLOW walker and got into a conversation during the last couple of blocks then with a lady whose 12-year-old son is also autistic.

It's always nice to have a chance to chat with others who know and understand, first-hand, what life is like when living with, dealing with, an autistic child on a day-to-day basis.

And if the party you've struck up a conversation with also has a really positive attitude and sees only the good in the child(ren) involved, it makes meeting that person even nicer. No, I didn't get her name, don't even know where she lives, but as we walked along and talked, it was evident that she understood and shared completely the same concerns Mandy and I both have with the children which is mainly the wish for acceptance by others for our children.

Last night, Mandy, Bill, Clate and I watched most of the Larry King Live show with Jenny McCarthy and Jim Carrey along with two others on the panel and interviews with some other individuals who are quite knowledgeable about autism.

I remember when Jenny McCarthy first started making herself into a spokesperson for autism and at that time, she was adamant about NO vaccines, none whatsoever. Today, she has changed her tune -vaccinate, yes -but do it sparingly. Eliminate some that she feels are unnecessary. Excuse me, but when did she get to the status of being a doctor of medicine and able to determine what should or should not be deemed to be a "necessary" vaccine?

I also kind of resent the book she has written with Jim Carrey -mainly for the wording of the title -I don't even remember now the full title but it is something about being the "COMPLETE" book on autism and cure of said disorder.

Sorry here to those of you who idiolize Mz McCarthy but because you have one child with autism does NOT make you an expert in that field! I'm not sure there is anyone, including those medical personnel and scientist-types who have spent years and years and YEARS doing all kinds of research into autism who could dare to call themselves an "Expert" and announce they have the "Complete" book on the subject of curing autism!

For openers, there are too many differentiations between each and every child who presents as being autistic for anyone to truly know it ALL!

And to say that her son is "Cured" too -that one really irks me too as there is no cure for Autism. Pretty much it is something that when you have it, you have it for life. I think you could compare it somewhat to being a "recovering alcoholic" who may be able to stop drinking, but that person still has that "problem" with him/her then forever after and if they were to start drinking again, it will kick in not where it left off regardless of how many months or years it may have been that the person didn't drink, to where that person's system would be today, had they never quit drinking. Do children with Juvenile Diabetes outgrow being diabetic eventually or does it stay with them too for the rest of their life. I do believe it is the latter, is it not? They may be able with medication to live a fairly normal life but they still have to be medicated, have treatment, for the rest of their lives and that to, is akin to autism then. Note -I said akin, not that Diabetes and Autism are alike. Just want to clarify that a bit.

Maya had been very excited all this past week about doing this walk for "Awetsum" -which is how she pronounces "autism." And we kind of used her participation in the walk as a "heavy-heavy hangs over head" thing with her all week too, bribing her into behaving fairly well or else "no awetsum" walk on Saturday, Maya." Now that it' s over and done, wonder what we can employ next as a bribery tool for her, ya know! LOL Always looking for something we can use in that respect.

I did get a couple of photos while at Penn State today for the walk but didn't have a chance to get a picture of everyone from our team who was there today. The reason being -mainly -that I kind of forgot to pull the camera out of my pocket and then too, my fingers were so darned cold, I really hated the thought of removing my gloves to hold the camera, focus and press the button. I know, I know -a lousy excuse -but a poor excuse is better than none at all, isn't it?

"Favorite Son" Clate, Son-in-law Bill with the hood up and Katie, (step-granddaughter) after the walk (run, for Clate.)
Mandy -that's a corner of Tracy, Mandy's friend, in the background.
Katie, Maya, Tracy and her daughter, Kara -Autism Walk, 2009.
Here's our minister, Pastor Carrie Anderson, Kurtis and I think Katie, off to the right -after today's walk at Penn State University.
Kurtis -with his blanket and his "bear" on top of the stroller hood there, after the walk.
Another shot of Kurtis -after the walk.
I really liked this picture of Kurtis as he was very much enjoying being in the stroller and outside too as you can see here.
And finally, here's a happy Maya too, after the walk! That's a little more of a bit of Tracy's daughter, Kara, in the background too.

As of this afternoon, our team has raised a total of $1,175 towards Autism Speaks -for research on causes, healing, better services for those with autism. We're still a good way off from our goal this year of raising $1,500.

So, if you would like to donate just click the button on the top of my sidebar -that little thing that says "Donate to Kurt and Maya's Team" -whatever amount you are comfortable in giving would be very much appreciated as have the gifts already given by several blogger friends to date too.

If you'd like to share this site with others who you think might be interested in reading about life with two small autistic children and/or possibly donating to our team effort too, please do. I sure wouldn't mind that at all!!!

And now, I think I'm gonna curl up in my chair -ben gay on my back, my legs and the heating pad on my behind to help ease up the tired aching bones, muscles, joints I have today!

8 comments:

Hammer said...

Yeah, I don't get celebrities telling me how to raise my kids or who to vote for. They have negative prestige in my book.

The Walk for Autism is a good cause. Thanks for the link.

SnoopMurph said...

Congratulations on your Walk for Autism and raising money for a terrific cause. I love the photos too!

I didn't get to watch Jenny on Larry King Live, but I find it irresponsible not to vaccinate and neurobiological disorders are not curable. Many parents will flock to celebrity opinions for whatever reason, but again, they entitled to their opinions and sadly, she has a much bigger soapbox than the rest of us. All that said, I wish her son well, regardless of whatever differences I might have with her views on autism.

I worry that in a few years, we will have an influx of children entering public schools with no vaccinations and how the schools are planning to handle this-because it will happen.

HalfCrazy said...

Walking is good but you should take it easy! Hope you didn't forget to bring some water lol!

It's a great thing that your family participated, along with a few people you know.

I agree with you regarding a person not totally cured. There are attacks here and there but he is not totally cured. But maybe a big percentage says he is pretty normal.

Your grand children look really happy!

terri said...

I'm impressed that everyone followed through on the walk in spite of the cold. What a great cause!

fermicat said...

I like Maya's way of pronouncing it - that is awesome! From you pictures, it looks like much colder weather than we experienced today.

I am sending you good thoughts for those muscles to quit being sore.

Mary said...

Jeni,

Congratulations to all of your family and friends who walked for autism.

I have also heard Jenny McCarthy say her son is cured of autism and totally agree with you...there is no cure for autism. I also do NOT like the title of her book. It will give folks false hope that their children can be totally cured of this disorder and you and I both know that is not true.

Brandon has had a couple of meltdowns lately, but not the major ones that he used to have. These are quiet, just a little crying and that because he was in pain...or at least that is the reason he gave. I think more it was because Mom was having surgery and he was scared, which is really very normal for any child.

Take care of your cramps and aches and congratulations on raising such a nice sum for autism research.

Blessings,
Mary

Maggie May said...

Good for you all doing the walk on such a windy, cold day.

Morgan Mandel said...

No, celebrities certainly are not authorities. They can't even live their own lives right.

Cute April calendar.

Morgan Mandel
http://morganmandel.blogspot.com