Saturday, June 27, 2009

Outfitting an Army (W update)

Our family is scheduled to go to a very special event next week, specifically one of my nephews is go to be bar mitzvah-ed, or more properly said, going to become a bar mitzvah. In either the vernacular or the proper however, it is a BIG deal. So, being a family member of the guest of honor, we have to make sure we are dressed to the nines (where'd they get that phrase anyway?) . Problem is, our family is usually dressed to the two's, we might hit the fours or fives on occasion; but nines require us to get out there and spend some real numbers in time and money.

First let me get through the logistics of the day. We opted out of having neither the girls nor the congregation nor ourselves endure the girls endure the ceremony. So we just have ourselves and the three kids (hopefully all three). My mother in law will watch them while we are there, that is, she'll watch them if her back is able. She has been having relapses of an old back issue, and with Livie being, shall we say, physically difficult of late, we are scouring the area without much luck, for someone to ride shotgun in the house while we go. Right now, it looks like we're going to have to at least do something about the party afterwards. We'll probably leave Gracie home and take Livie.

Okay, we know HOW we're going to do it, but now the inevitable question...WHAT TO WEAR? I'm the only one in the family who remotely has any level of dress up stuff, but even though I work in an office, we are 5 years into a daily dress down policy. I hardly think my 'Autism Awareness' golf shirt and khakis are gonna work in this situation. The 3 older kids, forget it. We need to go to the store if we need a white shirt for a choral concert. Livie and Grace my have a decent outfit or two. Linda's last nice outfit was the wrong season. So we have a 6 alarm fire that need to be put out.

I am first. Since life has not only seen me accumulate experience and battle scars, but also has physically accumulated on me, I can no longer count on major retailers putting on major sales to have sizes in my 'major' category. I love all those euphemisms for large: Plus size; the oldie but goody 'husky'; portly; women's sizes; big and tall, I'm sure if I actually went into stores, I could find a dozen more. My latest encounter was at Men's Wearhouse where I was declared an 'executive' size. Yup, I'm moving both up AND out in this world. What if I get any bigger? Am I then a VIP size; a presidential size...I guess they'll just stick with good ole' King size. Good experience from that place, from suit to tailor to shirt to tie....I'm set.

While Dillan's height has gone up, it's all just more beans on the pole; he has gotten use out of his last suit for three times counting this event. His 'difference' is in his shoe size. He's pretty much starting out in men's sizes, yet his feet are what they call narrow. He flopped out of the dress shoes we got off the internet, and we had to search out narrow sizes on Amazon. I honestly don't know how they did it before the internet. I guess that's one of the reasons society shunned those who were 'different', and maybe part of the reason society's getting wider, since strange sizes are now a click away. Heck, if I were a parent back in the 70's and I knew I couldn't find sizes for my kid, I would have stopped feeding them until they were back 'in range'.

Jason had proved even more a challenge. One suit we bought wound up being tight around the waist and we finally scoured all over the real and virtual earth to find something that A) fit; B) He liked and C) did not clash with Dillan's suit. By clash I'm sure you realize that means 'is NOT the same'. If you talked to them, being dressed at all similar would mean the equivalent to a personal Armageddon.

The 'other' two girls, Linda and Aly took to the malls over the weekend to finalize their ensembles. All I can say is THANK GOD I did not have to sit through that. I used to go out with Linda to the mall when she went out clothes shopping. Note the phrase 'USED TO'. No offense, but you women shop differently than men. It's true, and it's been 'scientifically' validated. Men hunt. Me lookum for 'XX '. Me kill (buy) 'XX'. Me go back to cave. Women 'gather'. They stroll the 'fields' looking for berries (bargins). Result: more berries than we can eat and WAYYYY too much time spent looking for the most ripe ones. Alright, men do miss lots of plump berries carrying their kill out, but that's the price of being king.

Okay, Saturday will tell whether we can pull it all off. We have 6 new outfits (well 5, with Dillan having a new shirt and tie). The next challenge is whether these nice outfits can survive 8 hours of our family. My bet is that at least one casualty; maybe one 'death' and one that will require major surgery. Mazel tov, Alex...
We made it to the Bar Mitvah, well most of us...
Livie was sick this week with some kind of weird virus and she seemed to have a sore throat and she's been very clingy. So Linda wound up staying home with Livie. The 3 older kids had a bang up time at the the point that they were requesting when the NEXT bat mitzvah party was. When I told them that there was no prospect of a bar mitzvah in our immediate family for more than a dozen years; the idea of conversion to Judaism seemed a viable solution to them.
We were heading home and we got a call in the car from homebase, requesting supplies from the local Stop and Shop. With the four of us fully dressed, and a supply of fun stuff from the party (goofy hats, glow stick chains, sunglasses etc) I saw an opportunity for fun.
I had the boys put on their jackets and sunglasses from the party, and with my jacket on and aly in her fancy dress; we went into Stop and Shop as an entourage. Jason and Dillan had fun playing Secret Service agents; checking aisles for dangerous characters and potential explosive devices. We had the checkout clerks in stitches as they saw Joliet Jake and Elwood Blues go by. The way I figured it, when was the NEXT time we would have the chance to have fun in full regalia? Halloween?

Thursday, June 25, 2009

Middletown in Monmouth/ IMPACT OASIS Pull it Together

I know it's probably small news in the whole scheme of the autism world, but I'd just like to give a big fat kudos to the state of NJ, the township of Middletown and most of all, to those innovative and hardworking group of people in the town who go by the name of IMPACT OASIS for pulling off the purchase of a 26 acre tract of land that will benefit the community in so many positive ways. For the town, they provide much needed open space. As an added bonus, they secure a place for autistics transitioning into adulthood to gain a sense of independence by providing a place to work, live and contribute.

17 acres will still be preserved as open space, but the remaining 9 will be used as farmland to create a working farm and community with autistic young adults at its center. IMPACT OASIS has been working on this deal seemingly ever since I moved down to Monmouth County, I am proud to say that they have realized their dream.

What's almost as impressive is the deal they struck. they had $900,000 of their own money; there was $250,000 from NJ/NY Baykeeper $200,000 from Monmouth Conservation Foundation and a stunning $1.55 million from the township. A bargain for all involved! Thanks IMPACT OASIS for following your dreams and making it a reality. Read more from our local paper, this is a program that I hope could be duplicated throughout the country.

Tuesday, June 09, 2009

A Highpathetical

This is a hypothetical conversation in a hypothetical speech therapy office between a hypothetical mom of an autistic 7 year old girl and a hypothetical grandma of an autistic 5 year old girl:

Grandma: I'm just not sure why she's waking up in the middle of the night. We checked to see if she's had a fever, she doesn't have any tooth problems, upset stomach, she certainly can be having any bad dreams.

Mom: Why can't she be having bad dreams?

Grandma: She doesn't dream, our doctor says she doesn't dream.

Mom: Of course she can dream, she just can tell you what the dream was about.

Grandma: Well, that's not what the DOCTOR says.

Mom: I mean, she could have been dreaming about her mommy leaving or something.

Grandma: Oh she doesn't care whether mommy there or not, really she's only living in the present, she hardly reacts when my daughter comes home.

Mom: It's not that she doesn't miss your daughter, most often, autistic children will just not be able to express it; they often have a very difficult time with communicating emotions and the 'outside' world has trouble reading the signs when they are trying to communicate emotion. You know they do a lot of work on things related to the kids having trouble requesting things that are not visually present. I have no idea of her progress on the ABLLS or what's in her IEP, but it's something that you might want to look into.

Grandma: Oh, I don't know, it's just all so complicated...sometimes I just wish they'd just stop pushing her and give her what she wants. It's like...when she wants to go out a door, she stands in front of it and cries...and they FORCE her to sign to go out, and she can cry for 5 or 10 minutes before she does's terrible!

Mom: They're just trying to get her to use language, if they continually give in and let her out when she cries, she learns that if she cries, she gets what she wants. This way, she learns to communicate the things she wants.

Grandma: Here comes my girl, I'll see you next week.

Off Grandma walks, with her Autism Speaks T Shirt, and a child who desperately needs to be understood.

Now...I am certainly glad this is a hypothetical situation and that I had no real-life basis for this conversation. While, I could half-expect this coming from someone who does not live within the rainbow of the spectrum; it disturbs me that this conversation, might an most likely does occur all across the US and the world every day. Folks... in short, I think we are not doing a good enough job conveying the needs, desires and capabilities of those on the spectrum, ESPECIALLY, those who are unfortunate enough to not be able to express themselves well, or not at all (in the conventional sense anyway). I'm not sure we are going to be able to change the minds of those outside of our comparatively little circle if we can't change the hearts and minds of those within it.

Please try and convey to all those you touch that, while autism may appear to be a shell, there is a living, breathing, THINKING, emoting and deserving human being on the other side of that only by their abilities, desires, ambitions and perseverance...and yours.