October 14, 2008

What am I getting at?

I try to keep things fairly light here. I also try to keep things fairly confined to me, myself and I. Oh sure, I unabashedly hawk my children's privacy in the grand tradition of Blog Fodder, but overall, I do try to keep a down low on the Drama.

As such, I have not talked much about my friend J's cancer. Something that is on my mind every single day and often, in my dreams now. Here on this wee site, I leave out most of my fears for her. The horror of what she is facing and how I look at my own children and wonder if she will even live long enough to experience the same milestones as I am with them.

As such, I do not talk much about how terribly I miss my Aunt Peggy and how the little things will rise up and smack me upside the head. Like, this historical election of which I desperately want know what she thinks (I had a dream about that, as well.) Like, how her birthday was this past Saturday. So, no. I do not talk about how I still get weepy over my Aunt Peggy's absence. She was 87 and I know that we were so very lucky to have had her as long as I did.

As such, there are a myriad of other things going on around here that I just do not talk about here.

And.

I also do not talk much about autism here. How it has affected my brother's life and now my younger nephew's life. I do not talk about the frustrations I have felt as I have seen my father, stepmother, sister and brother-in-law all navigate the mystery that is autism. The frustrations they have faced in finding resources - good grief, even in getting a diagnosis. The frustration my sister feels when folks stare at the supposedly "bad mother with the bratty, out-of-control son" because my nephew is totally freaking out because he absolutely, positively terrified to his very core during a thunderstorm. The frustration my brother is feeling as he tries to find his place in this world post-high school graduation. The list of frustrations goes on and on and on.....

I do not talk much about those frustrations because I do not feel that they are my stories to tell. It has absolutely nothing to do with shame or hiding. I love Nolan and Will for who they are and autism is a part of that. To reject the autistic part, would be to reject them.

I am okay with talking about this today because this Saturday, I am taking Anjali and Arun on a walk. Specifically, on a Walk Now For Autism - we are on the Teaminators team. If you would like to donate actual dimes and nickels towards this cause that would be cool - although, in this economy, it would be perfectly understable if you would rather just send thoughts and prayers. Those would be just as much appreciated.

Um. Also. If you would also like to donate some advice as to how I explain to a 3 year old that his much-adored cousin and uncle are different, but are not sick, that would also be cool. I would be grateful. I realized just last night, I need some way to explain to Arun why we are going out to the Kansas Speedway and walking.

Peace.

9 comments:

kristen said...

It sounds like you have a lot weighting you down. I'll be sure to send uplifting thoughts and prayers.

I have no advice. I wish I did. I am eagerly awaiting others' response.

You say this isn't your story to tell, and sure, you can't tell it from their perspective. But, you are an aunt and a sister. You have obviously been affected by this condition and how you handle autism's presence in your life is your story to tell.

Jenny said...

we have a little friend who is autistic, fairly high-functioning, which means he is still in the right grade for his age, but has a para that works with him during the school day. his issues are mostly social patterning and recognition, with a little ADHD and a lot of OCD. I have always explained to my kids that we have to remember that his brains works differently. We have another little friend who was born with only 4 fingers and has had some surgery to make her hand more normal, but she does things differently - like holding a pen or picking up a toy. I tell them it is like that - only its his brain that is handicapped and we can't see it. So the teachers work with him to learn to do things differently. Some things are harder for him to understand, like saying things out loud that are hurtful ( he tends to tell Drew that he is little, or smaller than everyone else, which he is sensitive about.) he doesn't say these things to hurt your feelings, he says them because he doesn't have that brain filter which tells him that it MIGHT hurt your feelings.
Anyway, I don't know how much of this will help you with Arun - but the example of someone with a physical handicap that he recognizes and can see, compared with a brain handicap that we can't see may help.

Cagey said...

Jenny,
That is a GREAT way to explain it. "Nolan's head works a little differently than yours". Thanks! The lovely thing right now is that Arun doesn't notice that Nolan is different - he is simply Nolan, his cousin, the one who plays cars with him. :-)

Wordnerd said...

I too have an autistic nephew. Matthew just turned 21, and he is a joy and a delight who has an indescribable gift. I'll never see it as anything else.

I'm headed over to your page now. Thank you for doing this.

Jen said...

Thanks for your transparency! Life can be hard and explaining it to little ones even harder. I was hoping to walk with Jill and her family, but my extended family is going to be in town that weekend. I donated instead. What a great cause!

Alison said...

Here's the cliff notes to my annual start of the school year monologue....

Basically, it's like sex ed. Keep it simple and add to the complexity over time.

We all experience things slightly differently and we all respond slightly differently. For example, when kids think they're playing quietly but mom thinks they're being way too loud.

Also, for some people, the way they respond to something might be different than the way other people would respond. Like I really like eating raisins but my friend doesn't particularly care for them.

It's hard on everyone if we don't respect each other despite our differences. However, it's even harder if, because of these differences, you aren't able to go to school, or live alone, or whatever the case may be.

What if a noise that makes other kids laugh and annoys your mom is so loud and scary to you that you want to hide somewhere with your hands over your ears? What if instead of a raisin being sweet, it tastes like a trash can and therefore doesn't seem like it's really food.

Some people get sunburns really easily and other people hardly at all. The people that get burns quickly have learned to put on hats and wear sunscreen, etc....

Autism research is sort of like that - trying to figure out what people can do so we can all go out and play together, eat yummy food, and enjoy our world.

....................

Ok, so it got a little screwy towards the end but I hope it helped a little.

Good luck, Alison

meno said...

Well, since i happen to be sitting here with my credit card next to me!

Good for you.

Monkey McWearingChaps said...

I'm very sorry about J-hope she is doing as well as is possible.

Anonymous said...

It took 31 years to diagnose my husband with aspergers, a high functioning form of autism. He had an awful childhood, years of being misunderstood by teachers, parents and friends. It kills me to think about how much easier his childhood could have been, had they just understood what was wrong with him, rather than just blaming him for things out of his control.

The more research they do, the more amazing strides they make. Some highly trained professionals can recognize it in children as young as 6 months. The earlier and more intense the intervention, the more of a chance they will lead a "normal" life.

Good luck to your family!