Tuesday, August 29, 2006

Taking the Disability out of Autism

And what is left? A person that's just different.

Leo began 2nd grade on Monday. It's Wednesday, and I keep thinking I ought to be documenting as always. It's a strange thing - I have nothing exciting to report about Leo (me, yes, see below). No issues, just stories about his "specials" like music, gym, art, and library. As with Leo's former teacher, Mrs. P. doesn't know he used to have an IEP. Time will only tell how his executive functioning differences/issues will play out. (see first grade, 6/22/06). I haven't figured out how to tag, sorry!

The way he processes will always be different. I'm guessing it'll be the same as 1st grade (talking out of turn, calling out answers, finishing sentences). His former teacher speculates this will still be his challenge, but that he'll be able to improve, slowly, over time. And it also depends on his new teacher and what her tolerance level is. Who knows. He isn't the only one doing this, but Leo has his unique reason why. On my list of stuff to worry about.

Weird. I spoke to an ASD mommy friend on the phone today - as with all of us, we are checking in with our friends to see how the first days of school went. I said, "You know, It's been very anticlimatic." First grade was the *big* transition. As I've been told by many people, 2nd grade is really like a reinforcement, a repeat of the concepts in 1st grade. Okay, that's fine - Leo is "one of those ASD kids" that excels academically.

The desire for sameness. Check. The desire for structure, predictability. Check. Knows the school inside and out, has his best pal in school, same bus, same driver. Check. He knew 80% of his classmates already - from our small town activities, some from kindergarten, some from 1st. Check (and nice!). He still gets to see his former teacher for hi-fives and hugs. Check (and bonus!)So far has no issues with school. He's doing the same thing he did last year, only the classroom is 3 doors down.

Leo's kid sister began kindergarten and now he sits with her on the way to school. They are extremely close, and I love that they now go to school together, and say hi occasionally during their day. Their best friends are also sibs (kind of creepy I admit), so it's quite a close-knit situation - we all know everyone's business, and it's transferred through the siblings. Another solidifying part of his life. A safe place to try new things, put himself out there. To grow.

And what about this new safe haven we've built for Leo? Knowing everything, the structure, vs. everything new, more chaotic and diverse?

The closeknit community - really wonderful families that have the same goals and values (aside from the super-Christian stuff). Everyone seems "the same", very Stepford, but not in a bad way. Just in a "sameness" way.

What if we had moved back to California and I went back to work full-time? A big cost-of-living difference. Private school a sure thing. Questionable neighborhoods, stepping over homeless on our way to the grocery store (well, HFS!). What if everything was new? Would Leo turn out more prepared for a cubicle in the future? For college? Am I fooling myself into thinking this is the real world? Is there a downside to creating this environment?

I moved every 6 months as a child. I don't remember any friends, except a picture I have of a beautiful East Indian girl named Marcie that "was my best friend". I can only recollect the photo and a few memories. And then there's the abuse and no parents to give me a foundation. As they say, "what doesn't kill you makes you stronger." I am living testiment. I'm sure I'm overcompensating, but I really wanted, ASD aside, to raise my children in a consistent solid environment so they could blossom.

Ahh...The comfort zone

Will Leo be ill-equipped to handle the real world? Given his difference, is this lifestyle a blessing or a curse? What about experience in chaos?, grown-up chaos? What are the downfalls, at age 7 (almost 8), to being exposed to to more diversity (it's quite white and Catholic around here, and Leo is half Jewish). Raising kids in a safe place - when is that not a good thing? WHat if Leo fell asleep to the sound of garbage trucks and sirens, versus bugs and birds, and you can see the stars like it was day? All the pets. The garden, being connected with the earth? I'm keeping my options open - charter high schoools, private schools for down the road. I want to be prepared for every forseable scenario. I realize this is impossible, but hey, I have to try.

Although Leo's environment is quite cookie-cutter, I try to live my life by example. I tell Leo I voted Democratic when it's a Republican town. I explained homosexuality, hurricanes, poverty, global warming, and other topics that don't gel with his (and my) fantasy childhood.

As always, I am reminded of how far he's come. How truly disabled Leo was. A bus will never be a bus. A hallway will never be just a hallway. I re-read the note from last year to edit for his new teacher about his "food allergies" and hypoglycemia. (He requires an "extra" snack in the afternoon since he needs to eat around every 3 hours). Boy has he become more independent! Leo's Autism no longer disables him. He still has ASD, and I love those contributions madly. I honestly do. But he no longer has anxiety, chaos, and challenges that are often associated with ASD.

And what about Mom?

I'm plugging away at my IEP goals for Leo. I am a list keeper since it keeps me really organized. Here is my Worry List for Leo:

1) Worry about Leo's calling out, and talking out of turn
2) Worry about soccer. This year they now add a practice to the week, and they actually play positions. Like the last couple years, this is regular soccer organized by the town. I wasn't welcome to participate in special ed soccer because of Leo's status (see discrimination for more on this). He's not the worst player, but he's not great. This should be interesting, to see how he can "juggle" what everyone is doing and what he should be doing. Theory of Mind comes into play, and I hope he holds up the ability to see intention amongst his fellow players. I hope he can hold his own, as many of his friends play, and he loves to be with his friends AND he loves soccer, especially since the world cup.
3) Worry that something else will come up where he'll stand out and it matters to him.
4) Worry if Mrs. P. actually "knows" about Leo's past. After all, we've been going to that school since Leo was just 3 - tiny short legs swinging from the big kid chairs in a cramped office for speech.... She's been there forever, and her classroom was close to where "the fireworks" of my tirades and other heated meetings took place. All of Leo's IEP meetings where held there and he got services from 3 to 5 there - 7 hours per week. And again, my worry is only because I don't want teachers to treat him differently, which is why we keep Leo's label a secret.
5) Will the "finishing sentences" thing manifest into a secondary disorder in the future, such as OCD? I know I can be very OCD.


So what else can I tell you about Leo? He loves soccer and football. He plays immediately when he gets home - very "organizing" for him. A nice transition. He has lots of friends that are very different. He used to only be attracted to the loud "boys' boy" kids, I think at the begining because their social cues are easier to pick up (the whole neighborhood could pick them up). Now he likes all kinds of kids, and his list of friends are as diverse as they can be.

Leo continues to be best pals with Sydney, his younger sister. She's quite precocious, so it's a nice match. sometimes they act like twins. They also share a room - bunks, so they just don't know life without each other.

Leo LOVES Lizzy McGuire. He watches the series, but insists his favorite is the movie where they go to Italy. He's not embarrased that he likes a "girl" show. Big news? The Cheetah Girls 2, the movie, just came out, and by god they love it. They've watched it every day since this weekend.

Topics? For some reasons he's asking a lot about Egypt. I can usually figure out the genesis of something I think is random, but for this I can't. He also likes anything travel related, and loves looking at maps and hunting for countries. He likes to know what countries are in which continent, etc.

He also is figuring out tornados, hurricanes, and other disasters. Funny - that's what happens when they can read the news. Leo will now read the Sports section of the newspaper (this happened on a plane on the way back from California this summer). Sydney was reading the front page, not understanding anything. All 4 of us were reading sections. I thought, WOW. We've transitioned.

And speaking of transitions, I began my job today as a preschool teacher - my 2nd year. This year I have 20 hours. Sydney began kindergarten. My husband had work per usual. We all had places to go this morning. Our own separate lives with our own goals. Scary, exciting, and fun, all at the same time. Life goes by so fast. I told a friend recently that it was quite disconcerting how time went by so fast now that I'm in the 40s (41). My friend said:

Pay attention.

2 comments:

supposedly susan said...

As always, I am reminded of how far he's come. How truly disabled Leo was. A bus will never be a bus. A hallway will never be just a hallway. I re-read the note from last year to edit for his new teacher about his "food allergies" and hypoglycemia. (He requires an "extra" snack in the afternoon since he needs to eat around every 3 hours). Boy has he become more independent! Leo's Autism no longer disables him. He still has ASD, and I love those contributions madly. I honestly do. But he no longer has anxiety, chaos, and challenges that are often associated with ASD.

Beautiful.

Ashley loves Leo said...

Thanks for your kind comment Susan!