Sunday, October 31, 2010

Saturday antics

After a morning grocery run to Market Basket (my version of hell), we ventured into H Mart today for the first time.  Not sure what to expect: I had heard it called a "nirvana". We saw long lines for coffee and pastries, a few food court-like places (not opened, but the Indian place looked pricey, a toy store, and more.) Well, the more was more kinds of food (ie: kimchee, fish, etc.) than I could make any sense of.   I am culinarily-challenged. If I go back there ever (prospects aren't looking good right now) I must bring real Asian people who know what they are doing and buying there.  I, despite looks, am an outsider.

The kids played outside, I got some client work done, but at least two of us were feeling under the weather.  All the spicy Indian food (from the Indian Grocery in Woburn Center) was enjoyed and I curled up reading "Mirrorball Man", written by my half-brother, Joel Brown.  This shows you the level of dysfunction in my family. My brother is writing a book and I had no idea.  I paid for mine, via Amazon, as did everyone else. Family drama aside...   It's a good read. Buy a copy.

This brings me to Halloween. I hate Halloween.  It used to be cute when the kids were younger.  Now, when my ex-husband asked me if he could bring the 8 and 10 years olds trick or treating, I gleefully said "yes, what time do you want them?".  Over the past decade+ I trick or treated on too many rainy, cold nights than I can count.  Andrew and  I want to hand out candy here at home. Maybe we'll try to knock on a few doors and do the "trick or treat" social story strip we've done for 8 years.   Julia was invited by a friend's mom to spend Halloween with her Ottoson classmate.  So, the Halloween logistics are made. Did I mention I am NOT dressing up?

What was left unsaid, a big so far, is that Halloween was my wedding anniversary. Twelve years later that is still very difficult to own.  95 people witnessed us say "I do" forever.  Splitting our family into two pieces hasn't gone very well for either adult, and certainly not for the children. It's all very sad to think of kids trick or treating at our wedding reception (although they were all so cute!).

Here's to a year of peace.

Tuesday, October 26, 2010

Dreams

When I was 11 years old, an awkward middle schooler, I wanted to be a singer and was regularly appearing on a local kids-oriented TV show called "Ready to Go".  I took modeling classes, thinking that I, this big-boned, adopted Indian girl, could be a famous actress or model.  (This was somewhere in between wanting to become a US Senator and changing the law to allow non-American born citizens like me to run for President).  I swam on the swim team, making it to the States in backstroke.  I was socially pretty awkward with boys, but had a small and good group of friends.  I had my whole life in front of me. I had dreams and aspirations. I thought I would make something grand out of my life. (Footnote: clearly that didn't happen.)

Today, reality struck  as I sat in the waiting room at NESCA, listening to my 11 year old son intermittently scream while undergoing psychological/IQ testing by two very talented clinicians/testers.  He couldn't even cope- it was too hard for him.  During a break he had earned, we decided he needed the Leiter instead, which is a non-verbal intelligence test. Andrew is verbal, he used to test with an average IQ despite his autism.  Not nowadays. Whatever is going on in his brain, he tests with an IQ in the 50's or 60's:  mental retardation.

Andrew has aspirations. Most involve being married to a girl who is a family friend who probably just looks at him as a unique kid, certainly not as her "boyfriend". Andrew has mapped out their lives together to age 30.  He writes detailed forecasts, sometimes for months, with ease.  He screams when he doesn't like "Mother Nature's" forecasts.   He wants to work at Channel 7, alongside his email/meteorologist buddy Jeremy Reiner. That fantasy world is the grand sum of Andrew's dreams.  He should dream high, every kid should.

I wonder if Andrew will ever live on his own someday.  I wonder if he will ever have a real relationship.  Heck, I wonder if he will ever have a real friend again.  It breaks my heart to see how much he wants normal things, yet realize he can't really learn in any normal fashion anymore and certainly isn't able to be tested as functioning as anywhere close to his age. It's kind of like having a 6 year old in an 11 year old's body. Maybe it will be that way forever.

My dreams changed over the years. All it turns out I wanted was to be a wife and mother and have a happy family.  I just want Andrew to attain all his dreams, and today was a reality check I was not ready for.  Parenting a child with autism and intellectual disabilities sucks sometimes.

God, I love him and his quirks to pieces.  Tonight, my heart just breaks, maybe more for me and what I want for him than for the simple things he wants for himself. 11 year olds should have big dreams and hopes. I am mourning the little boy I lost to autism somewhere along the way.

Monday, October 18, 2010

Pure joy

This pretty much says it all about how great being a mom can be.


More pictures can be found here.

Thursday, October 14, 2010

Practicing Kindness

If I had to choose one life lesson that I hope my kids carry with them as they grow into adults, it would be practicing kindness towards others.   It's not hard to be nice.

At Wendy's (insert "Laurel is severely culinarily challenged" jokes here), there was a gentleman,who happened to have a modified wheelchair next to the table. He was enjoying dinner alone.  As he struggled to get up from the seat and into his wheelchair, it broke my heart because you could see (I think) ) he was in pain and discomfort.

Sitting right next to him was a rather  preppy looking family with 2 preteens texting on their cell phones, all with Polo/designer clothes, and the requisite dye job on the mom, Dad talking loudly on his cell phone about some financial deal wearing cufflinks that probably cost more than all my jewelry combined.   The "perfect little family".  (I perhaps have my own work to do on being judgmental).

I was eating my baked potato with my girls. The man was having an awful time maneuvering his wheelchair, while holding the tray that he was trying to throw away.  The aforementioned family's girls stared at him, while the parents intently looked at their food. He was a foot away from their table.  No offer of help came from them.

I walked over and asked if I could take his tray for him.  He got tears in his tears and said thank you and apologized for some purported inconvenience , with very garbled speech.   I said, loud enough to let the family and the staff and my kids hear it, "It's my pleasure.  You have nothing to be sorry for.  Have a good night".

People should help people. It's not that complicated.  The entire episode reminded me that our kids learn by example.   My girls (whose backs were to the situation and didn't see anything until I went over to help) asked me why the other people did not help.  I reminded them to not worry about what other people choose to do because we don't know why their hearts don't tell them to.  I reminded them how good it makes one's heart to provide someone a little TLC and care.

We have a person with a disability in our family.  My daughters certainly already get "it" a lot more than most kids do.   Last night, I was in a really grumpy mood.  I needed an attitude adjustment.  I got one from such a small event. My daughters saw kindness in action.  All was good.

Monday, October 11, 2010

(Not) playing with poop: a joy of autism

Is it a good thing that my kiddo with autism pooped in the shower and knew enough to pick up the offending poop-ball and put it in the toilet with his hands ? I was shocked when he told me and sent him back to wash his hands for 2 minutes with lots of soap and really hot water.  However, I was secretly thrilled that he knew that poop goes in the toilet and that when it originally went somewhere else, he tried to solve the problem.

Andrew wasn't toilet trained for BM's till he was over 6, so it's been a long road, and there are still accidents. Overall, it's much better, despite the major constipation the poor kid suffers from.

My "favorite" poop story is pretty funny when I think about it. We were at Robbins Farm Park in Arlington and Andrew was still in pull-ups, probably 6.  We ran into his friend K from music therapy class and her PCA.  While the woman and I were talking, Andrew, pulled his pants down, pulled the pull-up down, and proceeded to leave a nice gift on the sand near the wooden vehicles.  Not having a dog, I didn't have plastic bags with me, and believe me there were lots of horrified mothers and nannies staring by this point (I admit to probably saying, loudly, something I won't repeat)... I gathered up what I could with the wipes in the diaper bag, and soon thereafter fled the playground with Andrew, and his annoyed sisters in tow.  You see, they were having too much fun going down the slide that is built into the hill over and over and over and over again.

Yet, tonight was progress, right? Someone tell me it was. Please.

PS I'm an autism mom. Sometimes, this is the stuff I write about. Sometimes autism is gross.

Sunday, October 10, 2010

Need a photographer for your kids, with or without special needs?




I can't say enough thank yous to Kristin Chalmers Photography for taking this "so good, it looks nothing like me" press head shot.  In addition, she shot the girls (Andrew will come later). So talented, so personable, and highly recommended to autism moms and everyone else, alike.

See more of my kids at: http://picasaweb.google.com/laurel930/KristinChalmersPhotoShoot?feat=directlink

The downside of the day was I lost my eyeglasses. I don't wear contacts so this is really annoying!  Ordered 2 more pairs- one really cool.  I am determined to stay looking young!

Saturday, October 9, 2010

Staying busy and moving forward

All of a sudden, I got *really* busy with work.  Families all over Arlington and Medford are retaining me left and right. (Yes, I am taking great care to take cases where there are no conflicts of interests.)  It's great to have a good reputation as an advocate and seeing how social media (ie: Linked In) is working to further my practice.   Maybe I won't be broke forever!

All the above is all very good because Columbus Day weekend is a hard few days for me.  No matter how "over" the past you can get, there are just some experiences and days that you have a hard time forgetting good things. That would be this weekend for me.  Being at a lake in the moonlight in Vermont was one of the best experiences of my life. It's over- life goes on-- we all move forward, the memories are wonderful. But, they are also bittersweet.

Keeping busy with work (I was up before 5 am working on cases) and my family (and helping a friend through her own "hubby is a big jerk" crisis)  is making the weekend flow.  The girls and I have stayed busy, doing stuff outdoors and shopping. Andrew has stayed busy with his PCA.  We are all getting ready to get some professional pictures taken by a fellow autism mom tomorrow afternoon.  Em and Sarah got dresses/matching leggings from Hanna Anderson, BUT neither are thrilled by the outfits.  I admit I was the mom who matched the kids in Gymboree outfits for years. They are now all too big for Gymboree, have their own fashion sense, and I also have a teenager with her own very unique style.  I just want everyone to be somewhat coordinated.

I got a great outfit from J Jill thanks to a birthday giftcard and bought not one but two sets of big jewelry to match it.  I hated them both when I tried them on. My tastes tend to run towards simple and classic accessories, not "bling-y".  This is much to the disappointment of my daughters.

Back to work now that the kids are asleep. Who needs sleep? Not me.