Advocacy and Letting Go

This folder represents almost  7 years of IEPs for Sam. (Individual Education Plans – for those of you not savvy in the education lingo. IEPs are drawn up for kids who have disabilities - whether physical, learning, developmental or otherwise - that might interfere with their learning in the standard classroom and/or standard mode of instruction.)

I had to drag the folder out of the filing cabinet this past week and dust it off in order to do a little advocating for Sam. I needed to confirm something for one of his teachers.

As I pulled out the thick folder, it hit me…in less than 2 months Sam will turn 18. My job as his advocate will be done. It will be up to him to determine if he feels a need for accommodations, and when, if ever, to share with educators/employers that he has Asperger’s.

Don’t get me wrong, we have known this day is coming. Specialists and educators have been clear with us and with him that this soon will be his burden alone.

It’s just weird to think about that.

You see, for more years than we have known he has Asperger’s, we have been advocating for him, beginning when he was three. Searching for the puzzle pieces that might help us understand Sam and help him navigate everything around him.  The thick file pictured above has a predecessor. Doctors; evaluations; diagnosis; therapies. A box full of files are now  in a box in the attic.

We haven’t referenced that file box in the attic or his IEP at all during his high school years. And even at the required annual updates, we often discussed dropping most of his accommodations. After all, Sam has emerged as a brilliant, independent, young man.

On March 28 of this year we may cease to be his advocates.  We’ll let go of that. But we will always be his parents and his biggest fans.

Just a little visit to China

At the beginning of 2012, Dave and I had the opportunity to travel to China. Why China? Lots of people have asked us that.

I say, why not? We’d never been there. Oh, and so we could see our friends, Karel and Lori. They left our community about 18 months ago to settle down in East Asia. Currently they are studying Mandarin while living in Dalian, in the Northeast province.

While it’s fun to watch social media and blogs to see what they’re up to, and to read their occasional updates, there’s nothing like being there and seeing what their lives are like on a daily basis.  So that’s why we went.

We were there for 10 days and our friends were amazing hosts. We saw a lot, ate a lot and had some unforgettable experiences – so much more than if we had just gone on a tour or tried to explore by ourselves.

We were so thankful for Lori and Karel’s ability to communicate for us. They really have begun to master the language, although they would say they have a long way to go. They were masters at communicating with taxi drivers, shop vendors and just about anyone we encountered.

They definitely are good at bargaining at the market – moments after taking this photo, Lori threw out a low-ball offer for some souvenirs we wanted and we were kicked out of the booth.

They introduced us to all kinds of food. No, all Chinese restaurants are not buffets.  But chopsticks were our only option and we managed just fine! We did cook our own food a few times. Like at Hot Pot (think Melting Pot, without the cheese or chocolate), and Korean BBQ, where we grilled our own food.

Although the meat choices were sometimes a little disconcerting.

We even got to treat their boys to an evening at McDonalds (flying solo without our interpreters!) Even with a picture menu, we had trouble communicating what we wanted.

We took a night train to Beijing which was quite an experience. Lori and I had a room with their boys. Dave and Karel got to bunk with some nationals.

We definitely got the Asian experience staying a couple of nights in a traditional Chinese courtyard hotel.



a view into our room



the courtyard, from our room

Some people have asked about the toilet conditions. While their home and the hotel have toilets, most other places have some variation of a "squatty-potty”. In my life of traveling/living places, these were certainly not the worst…

And thanks to Excel Body Fitness, my quads were in tip-top shape to support me when nature called. 

The sights of Beijing did not disappoint. No amount of words or impressive editing of photos could do justice to the beauty of the architecture or the massive maze of courtyards at the Forbidden City.

Or the awe of standing smack in the middle of Tian’anmen Square.

Or the majesty of the mountains laced with a stone wall, man-made hundreds of years ago, for miles and miles.

By far, my favorite experience was a “tea ceremony”. While I don’t think it was a real tea ceremony (which I think is basically a tea tasting…?) because it was way out of our price range, this shop owner was kind enough to share his already brewed pot with us. And teach us a bit about the proper way to taste tea. And drink from the same leaves over and over, bringing out a new flavor each time.

Then he decided to let us try another tea, just for fun. At least I think that's how it went down - it was all a foreign language to us. :-)

Just sitting in this place, with the décor and lighting was enough to make us feel like we were really in China. And I will always remember this each time a drink a cup of tea.

Thank you Lori and Karel for an amazing visit. We are so glad we got to experience a taste of your new life with you!

It's 2012!!!!

So this is kind of really late. But better late than never.

Merry Christmas and Happy New Year from the Loomis Gang.

a subtle plug for arts schools

Tonight is the opening night for Cary High’s production of “And Then They Came For Me: Remembering the World of Anne Frank.” It’s a multi-media presentation of the stories of a few teenagers and their families affected by the tragedy  we call the Holocaust. The main character is not Anne Frank, but teens who knew her, including her boyfriend. Part of the story is told by the actual survivors via video. The actors, in turn, portray them in their younger years.

Last night was “preview night” which is a sneak peak of the performance for patrons and parents. I wasn’t really sure what to expect – though I knew it would be different than any other production I have seen at the school.

I walked away deeply touched. While the performance was very well done, and I was impressed with each actor’s ability to pull the audience in emotionally, what touched me was much deeper.

 As a parent of one of the actors, I knew how this cast had delved into their roles.  This was really no surprise. This director has always required a lot of her actors. They spend their weeks of rehearsal learning and developing their characters beyond the stage and their lines, no matter what play they are performing. But this time they were not developing characters; they were playing the parts of actual people.

So during the last 7 weeks this cast has visited the Holocaust Museum in D.C., kept personal journals, met and listened to Holocaust survivors, and of course they have rehearsed tirelessly.

The play was performed in-the-round, with the entire audience sitting on the stage. After the performance, the director brought the cast out for a “talk-back” session. The floor was open for questions and/or responses to what we experienced.

And this is where I was most touched.  As the cast answered questions like “How do you get in and out of character?”…. “Did you really slap her???” … “How has this affected your life beyond the stage?” it became evident that this experience has impacted every single one of them, from the lead roles to the sound technician. These “kids” portrayed the lives of “kids” that lived through a time we cannot even imagine. The gravity of their thoughts, the depth of their emotion and their willingness to be authentic with the audience created a profound moment. 

In that profound moment, as well as during the performance, I loved watching the faces of the Cary High teachers in the audience. (Theatre in-the-round makes that really easy.) Mixed with emotion were faces of deep satisfaction. Satisfaction that their days spent teaching, challenging, grading, disciplining are worth it. Watching teenagers grow as they learn of things beyond themselves and struggle with the challenges in this world probably makes it worth it to get up in the morning and step back into the classroom.

And who would have thought that it's in the theatre department... the arts... the extra curricular program that is so tempting to cut when money is tight, that life lessons are learned.

Life as a Mom of an Aspergian

As many of you know, our second-born has Asperger’s. I don’t blog about it much, mostly because I haven’t wanted to blab it all over the web that Sam has Asperger’s. But recently he started his own blog. He’s amazingly gifted at articulating his perspective and his words have already been a blessing to so many. (Please forgive his lack of posts recently… it’s his senior year and college/scholarship essay season on top of his already crazy schedule.)

So I figure since it’s out there, it’s open season for me to give some perspective on being a mom of someone with Asperger’s.

Sam recently got his driver’s license. At 17 ½ It’s a little later in life than most of  his peers, but as we’ve learned through our years of parenting Asperger’s, sometimes your child just isn’t ready for some things as soon as other kids. This is actually true for all kids, but I guess we have a reason to not feel a need to keep up with the Jones’.

Anyway, finally the day arrived that Sam could drive himself to school. He got the proper paperwork, we filled it out, agreed to the the rules, signed our names, and he was assigned his very own parking space in the student lot.

Yesterday he drove off to school for the first time. It’s a short drive, but like any parent that watches their child drive off for the first time alone, I worried and waited by my cell phone until I knew enough time had passed for him to be safely at school. 

And on the first day… he got a parking violation. Yup, a big ol’ yellow slip on his car.  (Excuse me, his sister’s car) Why? He parked backwards in his space You know, so he could pull straight out when he left. All because I, Mom, suggested it. Well, apparently it’s against the rules.

Being the rule-follower that he is, he was a bit unsettled when he got home.  And I felt horrible for not noticing that rule, and further, for suggesting he park that way. He was wondering what other rules he had missed. So I rifled through his school paperwork to find the parking rules – which I never found because, of course, they are on the back of the parking application that gets turned in.

To be sure that Sam was comfortable with all the rules, I emailed the school asking for an electronic copy of the rules. They were prompt in replying with the attachment, but added As I read them over, I see we do not have the directions for parking on the form. He is fine, now that he knows.

Really?? Really??  This is where life as a parent of an Aspergian can be incredibly frustrating, and even more frustrating for the Aspergian. You have a rule that you don’t share until it’s broken? And yet I can reflect on many times this has happened over the years. For a lot of people it’s just water off their backs. But for an individual with Asperger’s, who really wants to follow the rules, having to break a rule before learning the rule makes no sense.

And so we face another life lesson for Sam. We take a deep breath and start to explain, once again, that life is full of rules. Spoken and unspoken. We’ll concur with him as he argues that it’s inconsistent, yet we’ll persevere in teaching respect for authority and how to be gracious in difficult moments.

And then we’ll collapse on the couch from mental fatigue and wonder how each of these moments is shaping his perspective of this complex world we live in.

Sam's Room Makeover

After taking a couple of years off any indoor DIY, I’m back into it. My plan for this fall was to tackle both Chelsea and Sam’s rooms – scraping the popcorn off the ceilings and painting away the colors they chose in their middle school years. 

While I had planned to tackle Chelsea’s room first - immediately after she moved back into her college dorm – my plans were changed when I received a hand-me-down from my aunt this summer.

We visited my Aunt Mary and Uncle Johney in southeast Texas in July on our way back home from Houston. While visiting, my aunt mentioned that she had an old hanging lamp that had belonged to my grandmother. She offered it up to me and I took it. (And Dave just rolled his eyes when he had to fit it into our already cram-packed car…)

By the time we got home to NC, I knew exactly what I was going to do with the lamp.  And it involved Sam’s room. 

So a couple of days after Chelsea moved back to college, I moved Sam into Chelsea’s room and started in on his room.

Here’s a couple of before pics of his room. Notice the dark colors – they were his 2^nd choice for his room in 7^th grade. His first choice was black and I said no way to that. But these colors still kept his small, poorly lit room dark enough….

The first step was scraping the popcorn off the ceiling – down to the dry wall. It’s a messy, ugly, back, neck & shoulder-breaking job, but here is how it looks in the end.

A fresh coat of paint on the ceiling...

Then I painted away those dark colors, we replaced the window blinds and ceiling fan, and we added an extra piece of furniture. All to give the lamp its perfect home (after its own little makeover).

Now Sam has the perfect place to read and think. What does he read and think about mostly? Let me show you a close up of who will sit next to him…

summer comes to an end....

Summer comes to an end for one of us tomorrow.

Our baby starts middle school tomorrow! Yup, he’s in 6^th grade. Our base school is year-round, so he’ll be in school 9 weeks on then three weeks off.

So it’s big changes all around for Jack – middle school, year-round calendar, and a 7:30am start time. Yikes!

I’ll most definitely do the traditional first-day-of-school photo at the crack of dawn tomorrow.  But I’m adding a tradition with our youngest. 

Here’s a photo in his new school spirit wear. 

I plan to take a photo at the beginning of 7^th and 8^th grade, too. These years “grow” by fast, so I’m going to document it with the same shirt.

Stay tuned for next Sunday’s post…. Summer ends for our firstborn in 7 days!