In her language

I've seen the "In My Language" video before, but after watching it again last week, it hit me even harder. It is a video made by Amanda Baggs, who has autism. She explains her perception of the world in a very poignant way. Please watch it: www.youtube.com/watch?v=JnylM1hI2jc

I've also attached a link to her blog in case you want to read more about her. http://ballastexistenz.autistics.org/

Amanda's perspective is important to me because it helps explain that just because someone has a disability does not mean they aren't a person. They hear us, they have feelings, thoughts, opinions. They have the ability to learn, to teach us things, and to love. They deserve to be included in everything we do, too. It's not a good excuse anymore to exclude children with disabilities from regular classrooms anymore simply because they can't do the "regular" work. They have important contributions to make in this world too, and if we keep excluding them from it, we'll never benefit from those contributions.

I've recently gone back to school to become a Special Education teacher. It took me a long time to decide to do this because I'm not a fan of the way our public schools treat children with disabilities. Furthermore the curriculum, interventions, and assessments involved in Special Ed surround proving the child has a disability, then proving you are doing something about it. This is all a distraction from the real issue, we don't actually know what to do with these kids. Lots of smart people are studying interventions as we speak, taking lots of data and writing lots of papers with the only real conclusion being that instruction and curriculum must be individualized. Hmm.

What I think it all comes down to, and what the schools will not (at least in the near future) admit, is love. We have to be willing to know these kids, to love them, to genuinely want the best for them. This is where true teaching comes from, love for a child. And I'm not going to be scared anymore to say it. How many meetings have I sat through where we get lectured on "proximity to clients," and the mortal sin of "enmeshment" with clients? Too many to count. Well, I'm becoming a teacher because somebody has to try and make it better. Forget data sheets and assessment forms for now, I'll start with love.

Sick day

The kid I work with called in sick to school today. This is bad for me, because I don't get paid, but good for me because I don't have to deal with a sick child at school. And of course now I have a sore throat, no!

We picked some lilikoi (passion fruit) this morning so it's going to be a good day.

Yesterday and Monday were pretty good at school, nothing really happened with my kid, except he got hit by a sassy, and much smaller, first grader. This was actually good because normally he is on the other side of the hitting end, and he didn't hit back, which really surprised me. It happened while we were watching a video in the SpEd class. My student stared whispering nonsense into this other kid's ear and it was clearly bugging him, but he wouldn't stop until, whack! Right across the face. My kid just stopped and turned to watch the video. Lesson learned? I guess we'll see.

A couple minutes after this little incident another one of our students (should I mention here that all the kids I'm talking about now have autism?) began making comments about the video like, "that's a lizard, right?" "that was scary, right?" After a few minutes of this one of the other little girls turns to him and says, "haha, WRONG!" Probably because she wanted him to shut up.

Thus one of the blessings sometimes of having autism is the lack of social graces. In most cases, like farting in public, it's not such a blessing. But we've all been in a situation when we wanted to yell, "haha, WRONG," to some obnoxious person, but don't do it because it's not polite. These kids have a knack for saying out loud what we're all feeling. Freedom, in a way.

Multi-grain risotto

This recipe is derived from one in O magazine. I changed it to suit me.

2 TBL olive oil
1/2 cup chopped onion
1 or 2 cloves chopped garlic
2 cups or so veggies (see below)
1/2 cup each brown rice, barley, and wild rice
6 cups water (or stock if you have it)
1 chopped tomato or 1 can drained tomatoes
1/4 cup parmesan or other hard cheese
fresh herbs (see below)
salt & pepper to taste

Begin by adding onions to a medium high pot or large cast iron pan allowing to soften, about 3 minutes. Add garlic then veggies and cook about 5-6 minutes. I have tried squash and swiss chard for veggies in this recipe, but you can really just add whatever you have. Try asparagus, zucchini, whatever sounds good to you. Add rice and toast for about 3 minutes. Add water, salt and pepper, and bring to a boil. Turn down the heat to low and allow to simmer for about 45 minutes, partially covered, stirring occasionally. Add tomato, cheese, and herbs at the very end. Choose herbs to suit the veggies you've added. I used sage and basil with squash.

This is a great base recipe, you can add meat like bacon, sausage, or shrimp and any number or veggies. It is surprisingly creamy and I especially like that it's wonderfully healthy. I made a plain batch (only onion, garlic, and variety of herbs) last night. It turned out ok, but I think adding veggies makes it creamier and of course tastier.

Saturday with Maggy

Today was Saturday with Maggy, my very part-time gig as a caregiver for a woman with Alzheimer's. She was in great spirits today, if a little bossy, but I don't mind too much. Even when I have to make her eggs over again because they aren't soft enough. I pride myself on being patient enough to grin and bear it.

We decided to go to a movie, "The Time Traveller's Wife." This wouldn't have been my first choice in movies, but Maggy wouldn't have appreciated "District 9" either. The movie is basically about a man who can time travel, but can't control when and for how long he does it. In the process he gets married and the story line focuses on this relationship. The most gut-wrenching part of it all was when he, "Henry," randomly time travels at really bad times, making his life chaotic and unpredictable. And in a way, this is just like Maggy's life. She has no control over what she can and cannot remember. She fades in and out like a light bulb that's about to go. And she certainly time travels. Sometimes when I see her, she's 90 year old Maggy, grumpy and bossy. But sometimes, like today, she is 20 year old Maggy, asking me to call her mother to let her know where she is, and thinking the senior discount is for seniors in high school.

Usually, I over think all this stuff, wondering how it relates to my life, what meaning am I supposed to glean from these experiences? But today I'm taking Maggy's advice, "just be happy. It's just the easiest thing to do. The easiest way to be."

meltdowns

So after being away on vacation for a week I knew behavior challenges awaited me at school. Having a sub has its pros and cons like anything, my little guy was of course the perfect angel for the sub waiting to show his anger and confusion for when I came back. The first day back (yesterday) was ok, no major incidents but definitely a lot of boundary pushing going on.

Today was a different story. Not only was he pissed at me for leaving, but we had an unusual schedule. For those of you who've worked with kids with autism, you know that changes, like in the typical daily routine, are challenging. I took a deep breath and prepared myself for an uphill climb. At around 9:00am we had PE. This was bad for several reasons, kiddo does not like PE because he's kinda large so he gets hot, doesn't like to run, and has a really hard time understanding and participating in cooperative games. And it was basically our first activity for the day. After I put the PECS icon in his daily schedule he gave me the "there is no way in hell I'm doin' this lady" look and promptly fell to the floor writhing in imaginary pain. After he stopped yelling I simply pointed out that he would not get to use the computer as scheduled if he didn't go to PE. So reluctantly he got up and walked to the field. I crossed my fingers and gave the lead teacher a little grimace. She knew I was in for a meltdown.

I coaxed and cooed him into line with the other kids, they were doing relays. When he saw they would be running he began hitting his forehead with a closed fist, a very typical escape behavior for him by the way. I allowed him to observe for quite awhile before suggesting he take part. The other children encouraged him to have a turn and then he was up, smiling and ready to run. Ok, I thought, he's past it, this thought of course coming too soon. When he got the signal to run he took maybe three steps, hit himself in the head, and crashed to the ground, to the great dismay of the poor regular ed teacher. I knew he wouldn't move for anything, she tried to get him out of the way. In the end, we moved the relay races to another part of the field so that he could commence with the meltdown. When PE was over he decided to get up and trudge back to class. I was not happy and he knew it. He kept saying, "I'm sorry boo." By the way he is essentially non-verbal so for him to say that in context was pretty huge, but it wasn't the time for celebrations.

It's days like these when I want to throw up my hands. When I feel like maybe I just don't get it, and maybe never will. Even though he is capable of so much, I can't force him to do anything, especially because he's bigger than me. I do know that if I stick to my guns and don't give in to the meltdowns, it'll get better. And by the way he did not get computer time today.

Split pea soup

I had some amazing carrots come out of my garden this season and I had to eat them before I left on vacation, so last night was split pea soup for dinner.

This recipe comes from a friend in Denver, I've added a few things to spice it up:

1 cup cooked brown rice
1 cup uncooked green split peas
1 qt plus 1 c water(use stock if you have it)
1 c chopped onion
2 cloves chopped garlic
1 c chopped carrot
1 chili (chipotle, jalepeno...I used a Hawaiian chili pepper, only 1/2 though, those buggas are hot!)
2 TBL fresh thyme (or 1 tsp dried thyme)
salt and pepper to taste
feta cheese

Cook the rice. Sautee onions, garlic, and carrot in a large soup pot for a few minutes. Add peas, water, thyme, and chili. Bring to a boil, then simmer for an hour to an hour and 1/2, until peas are mushy. Add the rice. Serve topped with feta cheese.

I don't think this hearty soup needs meat, but if you really want to, add some chopped ham.

Enjoy!

A new strategy?

Normally I ignore, well ok try to ignore, outbursts from the boy with autism that I work with. When he gets upset he will often yell, bang desks, bite or hit himself, or if I'm real lucky, hit someone else. They say, the proponents of Applied Behavior Analysis say, that if you ignore these bad behaviors and positively reinforce the good behaviors, that ignoring should extinguish the bad behaviors. Well so far it does work, except when he's being really noisy it's darn hard to ignore in the middle of a quiet classroom when the teacher expects you to do something.

So today we were working on reading, a very challenging task for my student, when he decided he didn't want to do it anymore. He began by banging the desk, then making loud noises, then finally started making these strange, jutting movements with his arms and legs, muscles tight. His leg was lifted off the ground and flexed, he bent over the leg and "grrrrr!" I couldn't help it, I totally cracked up. Not just a chuckle, but a full on belly laugh. And an amazing thing happened, he stopped, looked me right in the EYES, and started laughing, too. Ah ha, I knew it was an act!

Here's to a new strategy to combat bad behaviors.

Inclusion

There is quite a controversy (at least in Hawaii) over whether or not children with severe disabilities should be included in the regular education setting. Since I am a one on one for a child with a severe disability in a public school, I'm confronted with this controversy everyday.

The child I work with is in fifth grade and has autism. He has always been in a fully self-contained (FSC) classroom, which means that aside from recess and lunch, he basically spends the entire day in the Special Education classroom, with only severely disabled peers, working one on one (not in groups) with an adult. This year we (the SpEd teacher and I) decided he was going to spend at least part of his day "included" with his regular education class. The reason I'm advocating inclusion for this particular child is because I've noticed he is happier, displays fewer problem behaviors, and communicates more when surrounded by and engaged with his neuro-typical peers. Not to mention this is the only way to attempt to improve his social skills.

So far, it's been great. He makes transitions easily (a shock) and has been much more flexible with changes. Granted, we are only in the second week of school, but these are outcomes I certainly didn't expect.

Where it gets controversial is with the other teachers. They seem uncomfortable, scared, unsure with his presence. They place him in the back of the room and rarely talk to him. A few have voiced concerns with the Special Education teacher, claiming it is a detriment to the other children to have him in class. Today the school counselor saw us in math, he came up to us and asked why we were there. I tried to explain that it's good for him to be around his peers more, that being in this setting fosters independence, well it didn't matter. After class, he went straight to the SpEd teacher, telling her that independence was one thing, but this was crossing the line.

I haven't quite been able to wrap my head around why this is crossing the line. It's not hurting anyone, in fact it is probably a really good thing for the other kids to have contact with their severely disabled peers. Once again I'm completely humbled, these are the attitudes these children have to deal with daily. They really are Special people, much stronger than me.

On a lighter note the trout turned out pretty good. Popped the whole fish, stuffed with thyme and sliced lemon, in a 375 degree oven for 45 minutes. Should have done 35 minutes, it was a little over cooked.

Macadamia nut pancakes, trout, & pesto

Living in Hawaii, mac nuts are pretty easy to come by. I threw some chopped nuts in a standard Joy of Cooking pancake recipe and it turned out pretty amazing.

Tonight my brother, his girlfriend, my sister, and two friends are coming over for dinner. I have some trout (bad, bad, not local!) in the freezer and plenty of basil in the garden so it's trout with pesto for dinner.

My pesto theory: start with a lot of fresh basil leaves (two giant handfuls). If you don't have that much basil, sub another herb (like parsley, oregano, thyme, whatever you have). Trust me, you can't screw this up. This is where I plug gardening. Even if you don't have a yard, you can still grow potted herbs, and you must, it makes such a difference in cooking. Ok, now throw it in a food processor or blender, add a squeeze of 1/2 a lemon, a palm full of grated "hard" cheese (ex. Parmesan or I have been known to use mozzarella in a pinch), a palm full of nuts (mac nuts, almonds, walnuts, pine nuts, or whatever you have on hand although I've never tried peanuts), 4 cloves peeled garlic, salt, pepper, and a good pour of olive oil (1/4 cup). Blend that baby. You will need to add more olive oil to make it smooth. You'll know you've added enough when it's all blended and moves smoothly. Taste it and add more stuff if you think it lacks anything. So don't sweat it if you don't have all the "right" ingredients, get creative and sub with things you do have. Be brave and don't measure, going with your instincts always produces a better result than a recipe.

I'll let you know how the trout turns out.

How this is gonna go

So I'm writing this blog because these are the things I just gotta talk about. I'm not sure how it's all going to work out and fit together, so I guess the next thing is to just dive right in.

I'll be writing in here (hopefully) daily about my current passions. I believe in simple food, so this will be my little place to share recipes and insights.

Working with a child with autism brought a bright light to my world. It's been a fun, dark, hilarious, insightful, frustrating, and humbling experience. We hear a lot from parents and teachers, so I wanted to add my thoughts as a lowly paraprofessional.

Every weekend I hang out with Maggy. She is 90 and has Alzheimer's and this experience is slowly changing my perspective on life.

So hopefully someday this blog will get interesting!

In anticipation of Saturday

Tomorrow is the day I pick up Maggy. Every Saturday I go to her house and start all over again. Maggy is 90 years old and has Alzheimer's. I've been care giving for her the last three weeks but it has already impacted my life greatly. I decided to create this blog so I could just get my feelings out, maybe contemplate life a little.

Maggy is surprisingly spry and takes care of most of her own needs. We do cook for her because she has a hard time remembering the steps and gets really frustrated with that. The question I can't help but ask is, why? If our souls choose their own life paths, why would she choose this? Her short term memory is at this point really only about thirty seconds. Sometimes she will surprise me and remember something from last week or something, but this is rare.

Last week when I went to pick her up I was wearing an orchid colored sundress. She kept going on about how she wanted one just like it although the style would not be becoming on a 90 year old woman. It was as though, in those few hours, she'd transformed into her former twenty-something self. She told me she needed to call her mother to let her know she'd be late for dinner, she even giggled like a young girl over my wedding album. So here's where I admit that I'm a young girl, only 26. Was she somehow relating to my identity because she couldn't remember her own?

And what is this thing we call an identity anyway? Who exactly are we if strip it all away? Take away the memories, take away the relationships, take away everything we've learned. We'd still exist, she still exists. This seems now as if this is the point, the reason her soul has chosen this path. I am. She is. We are still here if you take away everything. But who exactly?