Sunday, June 26, 2011

A Big Week

Hopefully I will get around to get the pictures off my phone by the end of the week.  We have a big one planned, so I want to share the photos.  Okay, maybe the first three days aren't interesting, but on Thursday the boys and I are going to Kings Dominion with tickets from the Autism Society.  On Friday, Jacob and I have a big trip to DC planned with a tour of the Capitol.  The following week, we have White House tickets!  I will try to get the zoo pictures up this week as well.

Sunday, June 19, 2011

Backpack, Backpack

Last day of school, I threw out Jimmy's backpack in the trashcan and got online to order him a new one (Pottery Barn Kids was having a sale.) I guess I should have waited for an appropriated transition. He went outside to get the backpack in "commando fashion." He never saw me throw it away, so I don't know how he knew. It's in the washer now. At least the cat came back.  When the new one comes, I am driving the old one to the landfill.

When I got him back to his room I saw what was on his computer.  Inspiration.

Saturday, June 18, 2011

Summer Starts With a Bang...

A week ago, I came home to Chief Evans, one of his officers, and both of my girls in the driveway.  Jimmy had bolted from the yard on one of the ladies.  She lost sight of him and called her bestie for help.  They drove around the neighborhood and called me to report him missing.  I called police, though I was fairly certain that he had gone down to the school.  It wasn't much of a comfort to me, that instinct.  Anything could happen.  Apparently, a teacher caught him down at the school and was bringing him back up the street when the police got to our street and the girls got down it.  It was all over but the crying (me.)  

Elopement, running, is the most dangerous behavior that autistic kids have, in my opinion.  They are dangerous to themselves and have absolutely no appreciation of the risk or any danger they might be in.  Read missing boy story closely, especially ones found drown... often they are autistic.  They had a fascination with the outdoors or water and let themselves out.  It is why Jimmy is so exhausting and needs one on one care.  He's a toddler in a nearly ten year old body who is every bit as smart in many respects.  He just lacks the judgment.  We are switching from a sliding glass to a french door, which has a better lock.  We are on the waitlist for Project Lifesaver and we are finally considering an assistance or therapy dog.  Anything that can help for those hours during the day when I have to shut my eyes.  I fear the night. 

Friday, June 10, 2011

I loved this... I too often feel the disconnect.  After posting this on Facebook, I realized I was not alone.

Why autism moms act the way they do

I ran into a friend at the dog park this morning and she asked me if I was "OK".
"When I saw you last week, you looked like you were on the verge of tears."
What was going on that day? Oh yeah... 

In the spirit of Chantal Sicile-Kira's recent article Why do children and adults with autism act the way they do? in Psychology Today, I thought it might be helpful to to write an explanation of another mysterious cast of characters in the autism community: Autism mothers.

Why to we act the way we do?

Here are just some behaviors you may see in moms like me and what they could mean:
1) We cry spontaneously for what appear to be weird reasons. Our specialty is crying in public and at IEP meetings, and let me tell you, it is not pretty.
Cashier at 7/11: "May I help you?"
Autism Mom: sniff, sniff, sob..."I'm not sure.Thank you for asking. I'm just feeling emotional right now."
Why do we behave this way?
a)We aren't sleeping
b)Our already busy and emotionally intense days are punctuated with phone calls that catch us off guard and hurt our feelings.
c)Our child does something amazing or really funny, we tell a friend and it is clear they don't get why it's such a big deal. We hold it together until the nice cashier at 7/11 say's "May I help you?"

2) We join a book club. We think it's a good idea to do something intellectually and socially stimulating,and then we never show up.

a) Evenings are hard. Our kids need us. We are drained.
b) We did not read the book and worry that we'll say stupid things just to sound smart.
c) We are nervous about hosting book club at our house.

3) We are socially awkward. We didn't used to be, but now we blurt out bold statements like "Hysterectomy? I had mine vaginally. What about you?" (or worse "has your wife had one yet? ")
 Why do we behave this way?

a) We are immersed in the world of quirky kids. We're out of practice.
b) We're tired
c) We feel so lucky to be invited places that we are manic.

The Electronic Leash... An Infringement or a Necessary Evil

I heard about Alamo Drafthouse Cinema's PSA on texting and cellphone use during movies. 

While this young lady's delightful attitude obviously helped her get shown the door (and the serving of alcohol at this theater and whichever doorstep she darkened next only served to enhance her mood), I think blanket zero tolerance policies are foolish and designed drive out certain kinds of clients, whether management fully grasps it or not. 

Because of Jimmy's level of need, I always have my cell phone wherever I go.  Even if he is in the care of an attendant, I am legally responsible for him.  If he runs off, I have to be able to contacted immediately.  If he has a seizure or climbs out a window, I have to know.  Really any parent does.  Does the Alamo not allow parents of special needs children to be in contact with their caregivers?  Does Tim League not allow parent of typical kids to text sitters if they can't find the wipes?  How draconian is management about this?  I hear the suggestion that somehow parents should forgo outgoings until kids are older for these sorts of reasons.  But what if you children, for all intends and purposes, aren't going to grow up and leave the nest.  If they require a lifetime of care, does Tim League's policy preclude Austin and other Texas parents of special needs children the ability to see movies in his theaters?  Is this policy, to some degree, discriminatory?  I understand the need for reminders to be respectful of others, but to nanny people to the point that a certain group of people very possibly can't walk through your door seems a slippery slope.

I'm back...

I will endeavor to be good over the summer...