Wildflowers for Jade

Monday, April 1, 2013

The Autism Wars - The Great Mommy Wars of Special Needs


Welcome to Autism Month. My Facebook wall looks more like a war zone. "Autism is wonderful!" "Autism is horrible!" "Those who are saying it's horrible/wonderful are screwing up the message for the rest of us." 

Photo: Niicolas Celaya

There are some times my Facebook wall looks like it's about to implode on itself in a fiery mix of issues. I am connected to and FB friends with people from many beliefs and life-views, and often those views will clash. Loudly. Sometimes I'd like to tell both "sides" of an issue to shut the hell up and stop fighting. OK I actually did that once a few months ago. 

And now I'm sort of doing it again. 

I hate boxes and prefer think of each issue as separate, because they are. As for Autism - 

It is two sides of the same coin. I wish people could see that they're arguing different issues and semantics. Autism may be an "umbrella" but under that umbrella there are different pieces. 

Issue One: 
Autism is Awesome. It is wonderful. Well, our children who have Autism are wonderful. They are. They're awesome human beings who certainly have differences and also sameness as other NT awesome children. They love, they laugh, they cry, they create, they have talents and mad skillz.

And the push for the message that Autism is Awesome is because people hate. People hate our kids. People who have never met our kids hate our kids for having Autism. People have prejudged them ever since Autism was a word, and mocked, and bully. Oh do they ever bully. Police misunderstand them, teachers harass and even kill them, and vice versa. 
Then there are people who still don't know what to think, and that have only seen the (usually very wrong) stereotyped media portrayals, if anything.
So if you're asking yourself why Autism Awareness Month that's why. We want you to be aware that our children are first children. They really are. We want you to be aware that they feel and love and hurt. We want you to be aware that they are vulnerable, and that they need - no we're going to demand - that they be given a seat at the table of life. There's plenty of room for everybody. Stop being so damn greedy. Aww, look how sweet they are. 

Issue Two: 
Autism is not Awesome. Not meaning the homicidal commenters who troll the internet, or even Autism $peaks (which is issue three…) but the mothers of kids with Autism who think Autism is not awesome but their children are awesome. 
Can you see how we're saying the same thing here? 
It's because they love their children. This is where we get into the spectrum/umbrella/everyone is different thing. People with Autism can get to a good place. They can get to a great place. A lot of the first group are those who have found their creative niche or are adults with Aspergers or raising kids who will be adults who can function - even if sometimes awkwardly - in society. 
Autism is not awesome parents are spending sleepless nights and hellish days watching their children/adult children suffer from a very physical side of Autism that can be torture. There is nothing awesome about watching your child try to destroy himself because he's in pain and have not much you can do about it. I think we can all agree on that. If your child is physically suffering, the thing that's making him suffer is not awesome

However the Autism is Not Awesome crowd needs to also be aware that broadcasting their "not awesome" message too much too loudly too adamantly might look like "our kids aren't awesome" to outsiders. Who we are trying to reach. Who really can't help your kid's medical issues anyway.  
And the Autism is Awesome crowd needs to be aware that … sometimes Autism is not awesome. And that they look callously either unaware or uncaring that some people are truly suffering from it. 

***

In a discussion with a friend of mine we partially addressed this divide. The awesome crowd vs the not awesome crowd. Which is largely also the vaccine injured vs the not vaccine injured. Tragedy vs not tragedy. I think (I hope) we came to a consensus that we could agree we are talking about two sides of the issue and both have equal validation. 

If the 1 in 50 is even in part caused by vaccine injury, the injury is a tragedy. If someone is born with genetics that make him/her Autistically gifted, it's an occurrence. In neither case is the child a tragedy. The thing that happened is a tragedy. 

Everyone has a different story, even when we end up in the same place. I try to respect each one's story. We're not the same. 

Now I'm quite (quite) sure that I can extrapolate all I want, and the two sides will go on raging. It's not
black and white, and I'm aware it's even more complex than what I've said here. Probably I will still have to either spend all month waiting for my FB wall to implode, or start hiding stories to make it more pleasant until all I have left is pictures of kids and puppies and cute grumpy cats. But I'm still holding out that my friends can make some peace with each other's POV, even if they don't know each other.

(There is a third issue which is not part of the coin: People who think our children with Autism are not awesome, but tragedies. Entities that exploit and make our kids look like tragedies in a money grab for donations that don't actually go to help our kids. Then there's the parents who can't accept their children. Control freak parents. There are parents who can't accept Autism to the point where they are ashamed of and reject their own children, in either little ways or big ways. That is not a side of any coin, that's a distressed family that needs a slap in the face to get some counseling and suck it up that life isn't like playing barbie dolls. You can't control who other people are. Your children are awesome and you need to wake up to that and love them for who they are are, not who you want them to be. )

As for me: 
My son reacted badly to his vaccines. Every one of them. After his first year shots he regressed in speech. I finally wised up and stopped before his MMR. I still get on my knees and thank God for that. 
No I can't prove that vaccines "caused" his Autism, though I am convinced they at least greatly attributed to it. Because I was there, and you weren't. That is a tragedy. 
My son would get SO frustrated, and I would stoically struggle with never letting him see me cry over it. He tried so hard to communicate with me. He couldn't get the words out right. He couldn't understand my words. I'd look into his eyes and see the emotional pain from it. That is a tragedy. He gagged on his food and couldn't eat it, until he got down to 3 foods. That is a tragedy. I had to listen to him asking what is wrong with him when he couldn't keep up with his peers and say he wanted to kill himself at age 5. That is a fucking tragedy. 

I love my son. I love his personality. His health - while we have some issues - is really pretty good. I love that - in spite of my concerns and me watching every minute of his therapies like a hawk to make sure they didn't break him - instead it helped his true personality shine through even more. That is wonderful. Remembering with clarity the exact moment he unprompted said "I love you Mommy." That is wonderful. That he knows nothing of what's cool or uncool to his peer age group and doesn't care, that is awesome. That he still plays with what he wants to play with, and still crawls into my lap 100 times a day to tell me he loves me. That is awesome. That he's so obsessed with Godzilla he knows enough about it that he could write a Zillapedia on it. That is awesome. That he is completely and totally his own person. That is awesome. 

Forget the label. It's not about Autism like it's a personality that can have it's feelings hurt. My SON is Awesome. 

Now, let's all try to get along. 











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. 


Sunday, February 17, 2013

Not so comandive


If I had to name my parenting character flaws, one would be that I am probably too lax with Jaden. Not much; IMO there's a lot to be said for being casual in parenting. But maybe a little. 

Perhaps no child, still being a child, will ever confess their environment to be not restrictive enough. No matter how unrestrictive it is. 

Following a joke I made to him about his future self and his future kids, he replied "Except I wouldn't be as comandive as you are." 

"'Comandive'?" I said in surprise. "You think I'm comandive?" 

As an aside, I didn't think it was the time to correct his grammar, and I kind of like the way he makes up words. 

"Yes, you are a little," he said, putting two fingers together closely. OK only a little, whew. But I was still bemused. 

"Wait," I said laughing. "You're bossy *now*! I don't think you're going to change that much when you grow up." 

He still insisted he'd do it better, so I went through the list with him. 

"So… you won't make your kids go to bed? Will you let them stay up as long as they want?" 

"No, I'll make them go to bed." 

"Will you make them take baths?" 

"Yes." (That's a relief.) 

"Will you make them pick up their own toys sometimes, or will you be ok with cleaning up after everyone all by yourself?" 

I know his weakness. His eyes widened at the thought of having to not only clean up after himself, but clean up other people's messes all day as well. 

"No, I'll make them clean up their toys." 

I continued ruthlessly, referring to an 'argument' we'd had earlier over his one regular chore. 

"Will you ask your kids to help around the house and help you put up the groceries?"

"No I won't," he insisted.  

"Then that's the only point you won't be as 'bossy' as me. So you are you ok with doing everything by yourself?" 

He winced and stuttered, then a look of revelation crossed his face. 

"No, wait a minute," he said with dawning relief. "I won't have to do all that. I'll have a wife."

And so the Y chromosome rears it's head again. 

Monday, January 21, 2013

Did Pharma lie to drug your child?


Are drug maker deceiving you to get to your children? 

In July of 2012 GlaxoSmithKline settled for a hefty $3 Billion for using a plethora of underhanded tactics to push their drugs. One of the charges against them included proof provided by whistle-blowers that Glaxo had deliberately misreported research in order to push the drugs on children. 

"GlaxoSmithKline employed several tactics aimed at promoting the use of the drug in children, including helping to publish a medical journal article that misreported data from a clinical trial." - NY Times

Let's look at that for a second. Let's hold it up and examine it's many facets and implications. 

1. Glaxo lied to sell a pharmaceutical drug to children.
2. This drug was not actually good for children, or they wouldn't have had to lie. 
3. Glaxo lied to sell a pharmaceutical drug to children. 
4. This knowledge was only brought to light because someone in the company escaped with proof. 
5. Glaxo's unethical practices to make a profit is proof that Glaxo will use your children for money. 
6. Glaxo was able to publish it's falsified research in a medical journal, thereby presenting to the world that it was medical fact. 
7. The medical world and parents everywhere might still think it was fact (and they may still) if this knowledge had not been brought to light by said whistle-blowers. 
8. This is likely neither the first nor the last time that Glaxo has published a blatantly falsified study in a medical journal. 

This leads us to several easy conclusions. Drug companies can, will and do make up or manipulate research to support their cause. Their cause is to make money. It is not to save lives or to make sure little Suzy will make it to adulthood in the healthiest way possible. If it were, they would not have manipulated data in order to sell their unsafe drugs to children. 

In case you think this just implicates Glaxo as being not completely in your child's best interest, Johnson and Johnson recently settled a similar case concerning Risperdal, and Abbot Laboratories settled in a case on Depakote. 

Amongst the accusations was also a list of kickbacks given to doctors to push these drugs on patients who may not understand that they had become pawns in a high stakes, high money game. Not small kickbacks like a coupon for Denny's. We're talking vacations to Jamaica and the Bahamas. So doctors who swore an oath to do no harm and that people trusted their lives and their children's lives with shut their eyes to looking deeper into the health effects of the very drugs they were prescribing, and literally flew off into the sunset. 

What is most disturbing about these cases (as if there aren't several things) is that while some money was settled that to us looks like a major cut, for companies that make hundreds of billions off of these practices, they won't be bleeding. 

$3 billion represents only a portion of what Glaxo made on the drugs. Avandia, for example, racked up $10.4 billion in sales, Paxil brought in $11.6 billion, and Wellbutrin sales were $5.9 billion during the years covered by the settlement, according to IMS Health, a data group that consults for drugmakers.
“…a $3 billion settlement for half a dozen drugs over 10 years can be rationalized as the cost of doing business,” said Patrick Burns, spokesman for the whistle-blower advocacy group Taxpayers Against Fraud. - NY Times

No one person was criminally charged, there was no jail time, no one was implicated in the possible and very likely real physical damages that might have been done to children who took these drugs. No one was fired. And there was no subsequent investigation into what else might be lurking behind the closed doors of big pharma. Glaxo did however agree in the settlement to an unprecedented move: they threatened to take away the bonuses of anyone in the company caught being that naughty again. Ouch. That might mean little Timmy the fourth might have to wait on the new Bends his crooked daddy was going to get him. 

It's like the government pocketed the money, shook their finger and said "Don't let us catch you doing that again!" 
Though, it does seem that government would profit an awful lot if one day they did catch them again. Government, but not the victims. 

On the flip side of this, true victims of say, proven vaccine injury, are not even allowed to sue the pharmaceutical companies according to a 2011 Supreme Court ruling. 

So the take away from this is before you pop that pill into your mouth or the mouth of your child that you would most likely die for, research. Then go back and research again. Question whose research study you're looking at and who funded it. Question the FDA standards (I'm sorry, I can't say "FDA" and "standards" together with a straight face) that let anything through if it's got the right brand logo on it. Question if the doctor who prescribed it to you really did it because they've also researched it and know it's both safe and effective, or if they got a memo that told them to take someone's word for it and "Hey team, let's - push - those - drugs!" 

On my way to college my dad wrote a note to me, mostly in jest but - knowing him - all serious. 
"Trust no one! - except me. :) " 
20 years of hard lessons later, I told him he had been right. No one will advocate, research, or care for your child like you will. 

Sunday, November 11, 2012

I Go Exploring

Chase and Pip are here! Kindle version and in paperback. Beautifully illustrated story of fun adventure in rhyming verse, for kids ages 2-5.



And yes, you will be supporting a single mother of a child who has Autism as well! (Shameless plug, maybe, but it's true.)
If you want a hard cover book stick around just a little bit longer, it's coming soon! 

Wednesday, November 7, 2012

Annatto drama aka Annatto is the devil or turns my child into one


Andrew Magill
It began with a free cookie from Publix. Jaden was just a little over 3 yrs old. I
was hesitant but didn't think too much of it when they offered it to him. He went all hyper in the store after that, a little more than usual but that happens. I don't know if it's the florescent lights or the chemicals they clean with or the smells or… but something in the grocery stores set him off. Only he never calmed that night, until he was whipped into an absolute frenzy. It was hours later, 1 a.m. with me trying to hold down my screaming child to keep him in the bed when it hit me. He was yelling at the top of his lungs "Help me! Somebody help me!" At the time I lived in an apartment with people living under, over, and on three sides. I had horrible visions of the police banging on my door and ripping my screaming child from my arms into the night, because it sounded like he was being tortured. 

"What the hell has gotten into him?" I wondered desperately. "It's like he's been drugged." 

Just like. He'd been drugged. 

The next day I was at the customer service desk at Publix wanting the ingredients list of that cookie. They made calls, I made calls and sent emails. Two days later it was in my hand. It was a simple and short list. I understood and ruled out every ingredient except one. What was annatto? 

Ramon FVelasquez
Annatto, if you don't know, is what makes cheese yellow. Actually if you're eating something yellow, there's a good chance it's annatto. I had no idea previously that cheddar cheese was actually white, and they dye it to be yellow. Why? 

Annatto is a natural food dye, but it's also the most allergenic of natural food dyes. Unfortunately there hasn't been much study of it, so everything I will tell you is from years of anecdotal evidence. 

My first round of research turned up some odd stories of children so allergic-yet-addicted (it so happens some people crave what they're allergic to, don't know why?) that they would only eat yellow and only wear yellow. I wasn't even sure if I believed all that, but there was enough to make me wonder just how far this connection was with Jaden. 

He did have some annatto in his diet already but not much, due to his very self-limited diet. Grilled cheese was one of his 3 staple foods, and I used yellow american. I switched to white american. There was some slight resistance but it wasn't terribly difficult for the fact that the cheese was inside the bread, and not prominent. And I fed him in front of the TV so he wasn't staring at it the whole time. 
Slowly, his speech started to improve. At that time his speech had been very twisted. Twisted is really the best way to describe it. The words were half wrong, he would say one word when he was trying to say something else. The other half weren't even real words. Not only that, but he said them all in the wrong order. 

A few days ago I watched a short video of him from that era. He was talking and I was responding, and I thought "How on earth did I DO that?? I can't make out a single thing that sounds like a word!" I can't even begin to describe the copious amounts of desperate effort it took to understand that child… I must be a saint! 

I digress. In a few weeks his words started making more sense. Less scrambled sentences. Words that were actually words. I won't say it "fixed" everything. He still needed speech therapy for two years after that. But there was a definite notable improvement that made speech therapy more effective. But was it really the annatto? It's often difficult to tell in these types of trials. I started to doubt myself, often. There was still some slight trace of it in his diet, in the vegetarian Morningstar Chick'n Nuggets he ate it's listed as an ingredient (and I tried but could not get him to switch.) But I've ascertained that it can't be very much. Sometimes I gave in to his love of Goldfish. And I regretted it. Every. Time. His speech would become twisted again, his thoughts more confused, his behavior more hyper. After enough times it was too obvious a change, when that was the only thing that changed. It had to be the annatto. 

I think of that Publix cookie as a life saver. Thank you, Publix, for dosing my child with a large enough amount of unnecessary annatto that I could finally root out something that had been too subtle in his other foods. Seriously. How else would I have figured it out? I wouldn't have. It was also a backhanded blessing that his diet at the time was so severely limited. Finding a needle in a haystack is more doable when you've eliminated most of the hay. 

Why am I writing this rambly annatto post? Because I made a mistake again. I was prepping for a long trip, and Jaden's dad offered to make a last minute run to the store for road trip snacks. There's not a whole lot he can eat on the road. White cheese to put in the cooler (we switched to provolone btw, he's loving it,) bakery bread, and … oh I don't know. He was standing by the door keys in hand. "Goldfish." 

Why didn't I ask for his veggie sticks? 

Evan-Amos
So a whole huge box of Goldfish was bought and I tossed a handful each into two baggies. A little tiny bit every 6 months or so is not *that* bad… 

Until that night, 8+ hours later we arrived at my parents house, all travel-weary and stuff. Unpack the car, talk to the parents… while Jaden snags and eats the whole rest of the box of Goldfish. 

And so begins my 5 whole days of some of the most hellish behavior I've ever had from him. I'm. Not. Kidding. 

I told my dad (or maybe screamed at my dad, it's all a blur) "He's not usually like this! If he had been, there would have never been a custody battle!" 

For the record, there was never actually a custody battle. Also for the record, it's not a bit true anyway. I was just at one of those I'm-pulling-my-hair-out moments. Was all of this really from the Goldfish? Or was it the change of scenery and routine, or stuff between me and his dad, or… 

And on day 6 I had my child back. Still hyper, smart-mouthed, and easily frustrated but no longer these things at a screaming 20 on a scale of 1-10. His true personality was back and no longer drowned out. I realized how much I had missed him. Nothing had changed but that it had been the right amount of days for a whole box of crap to get out of his system. I will never feed him another Goldfish again and will body slam anyone who comes near him with one. Just saying. 

After all this drama I realized that I can't, just can't, be the only parent of a hyper child with Autism and SPD who goes off like a baby on crack when fed annatto in the world. I might just have been lucky enough to figure it out where others haven't who weren't given a free Publix cookie at the time when their child had limited themselves to only 4 foods which happened to include chocolate chip cookies.  I'll concede that might be a rare chain of events. 

So I'm writing this for them, or you, whoever you is who is trying to figure out why your child turns into the tasmanian devil sometimes and if it could possibly be a random, unheard of, seemingly innocent food additive. 

That is all. Oh and as a word of warning to everyone else. I will body slam you if you come near my child with a Goldfish. 

"Natural food colors such as annatto extract have not been extensively investigated with respect to potential allergenic properties." Wikipedia  
"Allergy symptoms for Annatto include…
Mood changes
Behavioral changes
…"
rightdiagnosis.com  


ETA: 
Food Intolerance Network Factsheet: Annatto
There are a lot of anecdotes here that describes similar physical and behavioral reactions to annatto.


Read my most recent post on annatto: Taking Annatto Seriously 



Friday, October 5, 2012

Homeschooling ASD: joy and patience


I waded into Jaden's toy strewn room, unable to find a clear path. I told him to clean it earlier, and he said he did. 
"Jaden, this is what you call a clean room?" I asked incredulously. 
"I'm sorry, Mom," he replied. "My room looked clean to me. It's because my brain thinks different from yours." 

Aww, baby's first time using Autism as an excuse. I called bull***.  Sorry son, not this time.


We're doing well. Oh I mean we still have our moments where I'm supposed to have the patience of an angel and --- sometimes I don't. 

It's important to try my best as a parent, but I know that somewhere along the line I'll always fail. Like any parent.* I think it's also important to apologize to him when I screw up. Children see their parents as some kind of God-figure, if even if we're being wrong and unreasonable. I mean, they do know that we're being unreasonable, but the greater part of them is saying that we are unreasonable because there's something wrong with them. If I screw up, and I do, I tell him so and apologize. 

*Unless you're Caillou's parents, who never get upset, lose their patience, or raise their voice to more than the joyful twitter of a nightingale. But Jaden likes the show, so I must insert my earbuds and try to endure without growling and mocking them, because he hates it when I do that… 

But we've both been out of sorts lately. Just when I think I've found a good balance with him, it goes awry. Patience is worn thin in this household, and his temper flares up like a forest fire over the slightest thing. I wonder if the seasonal allergies have us wonky. Almost worse to me is how terrible he feels about himself afterwards for losing it. 

I think it's partly because school's "in session." He's very hard on himself, and I spend a lot of time trying to get him to be nicer to himself. There's no one to keep up with and there are no tests to fail. But the smallest mistake can send him over the edge.  

So I'm still trying to find our rhythm. I've read in several places that it can take a good year, so to consider the first year practice. I'll take this as gospel since I don't feel completely stabilized yet. I'm really enjoying it though, and - though the word "school" causes a biological reaction in children that is instinctual, much how like a field mouse knows to run away from a hawk's shadow - Jaden is enjoying it more than he'll admit. Any simple craft is a big hit.  He evens asks to do certain "school" things in the evening, for fun. And since I have a sick obsession with researching everything then attempting to compile it, of course lately it's been all things homeschooling. This time there is way too much of it - too many brilliant ideas, cute crafts, and free worksheets and printables everywhere - and I have to stop myself often. If I can't get it under control I might have to go into rehab. 

But I am also fully faced with the… discrepancies in Jaden's learning. Autism, SPD, and Executive Dysfunction are loudly prevalent. My personalized and pieced together curriculum ranges from preschool work to second grade. I've advanced him in some areas, only to have to fall back again to the beginning. His skills and comprehension are all over the place. Which is why I'm more glad I'm able to do this for him. But if ever I had a doubt of his intelligence (and I did, at times) they've been completely laid to rest in the last 6 months. 

Now, God give me more patience.