Wildflowers for Jade: March 2013

Sunday, March 17, 2013

Good reasons to drop that bad advice and DO look back on your life

Excuse me miss, you dropped something: Good reasons for Autism moms to drop that bad advice and look back on your life

"I used to enjoy cooking."

Homecooked meals at my parents' home
That thought came to me suddenly one day. I was almost surprised at the revelation. It's funny how I'd forgotten that, and how much things had changed.

"Why? Why did that change?" As I reflected on it, I could easily pinpoint where that joy had gotten lost in the messy years that followed. There were a few minor things: the fact that my ex didn't like vegetables and I was a vegetarian. That had thrown a bit of a kink into my normal menu plans. But in all honestly that wasn't the major assault to that piece of me. 

When I ask myself when I stopped cooking, I remember one specific day. There were many days like it, but that was the day it broke me. Jaden was at the peak of his food aversions. He'd lost 8 pounds at 3 years old. That's a lot of body weight for a 3 year old. I went to the grocery almost daily, combing the isles for something that he might be able to eat. I say "able" because he tried to eat some things, but he couldn't.

That day the sun was streaming into our apartment and Jaden was playing at the dining room table. I was making homemade macaroni and cheese from a recipe I'd gotten. I tasted a bite. It was delicious. Nothing like the boxed kind. 
Jaden came into the kitchen sniffing the air like a cartoon character following the beckoning scent. 
"That smells so good! Can I have some?" he said (when I translated it from his twisted Autism language.) 
I happily fixed him a bowl and put it in the freezer to cool, while he impatiently twirled and danced on his toes. "I'm so hungry, Mommy!" 
When I took it out of the freezer he followed me dancerly and sat down in front of it. First bite, tentative.
"Mmm, mm!" 
Second bite… then it started. He gagged, then gagged again, then panicked and spit it in his plate. He sat back forlornly and pushed the bowl away. 
"Let's try again," I said almost pleading. 
"I'm not hungry," he replied. 

And I was broken. 

I couldn't even count anymore how many times something I cooked smelled good to him, only to have him gag on it. Then later he gave up, and only eyeballed the food warily and said he wasn't hungry. Then we got to everything smelled awful to him, could I eat it in the other room? 

I felt like I was torturing him. How could I continue to fix meals he loved the smell of but couldn't eat? 

Over time I'd forgotten that I ever cooked, that I cooked often, that I enjoyed it. We live off of sandwiches, microwaved vegetable burgers, and quick meals. 

And really, when I look back, life is all around just different. So much got lost on the cutting room floor when they said "Autism" and our "Autism life" began. 

I know there are a lot of people who will know what that means. 


After a few years of feeding therapy Jaden can eat new things now. Like me, he also lost something back there and became accustomed to avoidance. But he *can* eat, even if he refuses it, and I *can* cook again, even if I have to work through my own feelings of avoidance to do so. 

What else was lost back there on the cutting floor? 

They say don't look back. I say "they" give a lot of trite advice that's sometimes just plain bad. 

This is my advice: 
Look back. It might be painful, but sometimes you just have to work through the pain and deal to get to something good. 

Get a pen and notebook. Write down everything that used to be YOU. The things you did, what made you the person you were, the things you enjoyed. All the things you considered good. 

Do this even if the diagnosis is new to you. Or especially if it's new, and you're going through the cutting room floor. The hard stuff won't last forever, and one day you're going to have more than 10 minutes on your hands between therapies and you'll want to remember you. 

When you go through this list, you might find things you'll want to cross off again. You might be past the phase where going clubbing or playing poker with friends even tempts you anymore. That's ok. The difference is this time you'll be making the choice to cut it, instead of being forced by circumstances. 

There are some things circumstances will still prevent. Put them in their own list and save it. 

Then there are the things you will remember that you liked about you, and lost, and that you can pick up again. It's difficult to break out of old routines but these things can be put back in slowly. Go buy a cross-stitch pattern or bake a casserole or start a story, or read a book. One that doesn't have the "A" word in it. I know for some of you it's been a long time. 

What did you lose back there? 

Sunday, March 3, 2013

Baseball & Ballet

After a brief hiatus (ok long) from extracurricular activities, we've thrown ourselves into the Spring mix again with ballet and baseball. Our hopes for ballet is that it will help him get more in touch with his body (OT) and because it's good for him to have some discipline with following directions and peers (speech, ABA and socializing.)

I just don't think I'm ever going to think in 'normal' terms again. 

This is also our first drop-off situation. Well, to me but not to him. We dropped him off at the Brown Center but then I'd go in and watch from the monitors. No monitors here. Jaden however is so used to being observed by camera that he thinks it's natural. 

I ask him about what he does in ballet, because I have no idea. He likes to answer with one or two word sentences, which I patiently try to stretch into at least 3 or 4. 
"If you want to know what we're doing, why don't you just watch from the monitors next time?" he said last week. 
"They don't have monitors at ballet," I answered. "So I can't see you at all. I have no idea what sort of things you do, and I'm just curious." 
"No monitors?" He looked at me baffled. 

I wonder again what life is like inside his head. 

"We had to do our legs like a diamond, but I wasn't very good at it." 
"How do you know?" 
"The teacher came and straightened me up."
"Did she fuss at you?" I wondered, because he seemed unhappy. 
"Why would she do that??" he answered in an offended tone. "She's a nice lady." 

It comforts me to know that she's such a "nice lady" that even to question her offends Jaden. I nervously had taken some advice to not mention to them that he has Autism. After meeting his teacher, though very briefly, I got the impression it wouldn't have mattered. She expects her students to listen to her and that's all. I'm ok with that. 

I also didn't tell his baseball coaches. Not yet anyway. Unless it's someone's job to work with Autism, I've found it doesn't do much but cause awkwardness. I can imagine they'd just look at him differently like "What am I supposed to do with that? Should I treat him differently?" 
No, please don't treat him differently. He needs to learn to pay attention and follow directions the same as the other kids. 
So then, what's the point of mentioning it? 

The coaches are patient and they're pros at teaching the kids. And unlike soccer where most of the kids had apparently been on the field since they were 2, all Jaden's teammates seemed to be just as awkward and confused as he was. 

Yes, this makes me happy. Just once in a while we need a level playing field and this might be it. 

He did space out some from all the stimuli, and it was difficult for me to see it. At home he's so engaged now. So it meant that the coach would call his name about 5 times until his dad or I got his attention, and that happened several times. But once he would realize he was being spoken to again, he did good. 

I think a lot of Autism moms will understand when I say I am hopeful, and it's a big deal that this goes well. If you were reading my blog last Spring you'll know that soccer did not go well. He gets discouraged easily and that only served to make it worse. He needs something he's good at, that will show him that work and practice can pay off. 

He objected to going to practice again tonight, but I sent him off with his dad with what I hoped were inspiring words. Whether or not it helped, he called me on his way home, though he doesn't usually like to talk on the phone. 

"Mom, I did great!" 

He then proceeded to describe to me, without prompting, everything he had done. There was pride and excitement in his voice. 

That's a home run.