You - my little runaway

Last night Jaden got mad at me and 'ran away from home' for the first time. I stood in the rain with an umbrella (amused) to watch him wander around the backyard, trying to figure out where he wanted to go live. 

He came back to take the umbrella from me with a "thank you," and left again. While I went to get another umbrella his dad made him come back because he was wandering out of sight.

He was still grumpy so, in my pjs, I asked him if he wanted to take a walk in the rain with me. We wandered the sidewalks as the rain started pouring even harder. I told him I was very glad he came back, because I would miss doing these things with him. He replied "I didn't come back, dad made me come in." 

We stood and watched water gush down the hill so swift it was almost violent, as it poured into a drain. 

I knelt beside him under a street lamp, our umbrellas overlapping, drops trickling into my hair, and told him it was moments like this that were the reason I wouldn't let him play Minecraft 10 hours a day. The reason he was angry with me. "Because we would miss special moments like this. And this, one day, is what you're going to remember." 

We sang "Singing in the Rain", twirling our umbrellas, undeterred by the rain on our faces. When we came back home I ran a bath for him while he splashed me with cold water and started a water fight, him giggly and finally confessing that he felt better. 

Later, as I tucked him into bed, our heads on pillows close together, I asked him where he was trying to go when he ran away. 

"I don't know," he said. "I was just trying to think of a place to go and live. But I felt like a magnet kept pulling me back." 

"I love you so much," I told him. "I would miss you if you were gone." 

"That was the magnet pulling me back," he said. 

"What?" 

He poked his finger into my shoulder. "You."

Taking Annatto Seriously

I want to do a quick follow-up to my Annatto post last November, lest anyone think I've forgotten about it. Nothing could be further from the truth. It's on my mind almost daily. 

I was very slow to treat the issue like a serious allergy. I mean, it's food, and it's natural and it's in everything. My son has Autism, and it just didn't occur to me that a majority of his behaviors could be coming from something he was eating. I didn't realize (or obviously I would have done this years ago) that eliminating that one ingredient would be a life-changer for us. 

It is. 

Whenever I hear someone talking about how their child exhibits extreme irritability, head banging, screaming, irrational behaviors, huge meltdowns, I think "it could be annatto". I don't always say it. I don't want to annoy people by being repetitive. I'm not an evangelist. I'm not even some kind of expert. I'm only a mother who figured out something that still shocks me. 

But it can leave me breathless sometimes, the thought "how many children, how many adults even, are on behavioral drugs because of annatto? How many may have even been institutionalized because of violent behaviors possibly brought on by this unnecessary ingredient?" 

And I have to say, it's worth a shot. Isn't it? It's worth a two week elimination of something small to see if this is the issue for the person you love. Or yourself. If it changes nothing, you can move on without having lost anything. If it makes a difference, your child can have a different life. 

To do this though, you have to understand that it's really in almost everything that's processed. Treat it like a serious allergy and don't assume without seeing the ingredients. If you don't know, call and ask. Get on the internet and look it up. That's how I found that Duncan Donuts uses annatto in their donuts. That's how I found that Annie's Pretzels don't use it for their pretzels. Yes, I typed and scrolled on my phone to be sure before I said "yes" to a pretzel in the mall. Purity ice cream sandwiches - yes, they have annatto. So do Pepperidge Farms frozen cakes. Damn it. 

We did have some trial and error. I am able to detect an "oops" now by what happens in the days after, then had to go over in my mind what he had eaten. I've eliminated some brands (especially flavored chips) that did not have it listed in their ingredients, but fully assume that it's hidden somewhere because of his reaction. 

My son, who is only 6-going-on-7, already understands. He doesn't like the way it makes him feel either. Someone recently gave him a bite of something, but when he realized it had yellow cheddar in it he spit it out. 

It pains me to know that somewhere, a child is having another preventable annatto freak-out. Please share these posts, and if you've had the same experience, please leave a comment! Let's get the word out. 

Read:

  collection of annatto reaction stories on fedup.com

  Annatto fact sheet

My previous post: Annatto drama aka Annatto is the devil or turns my child into one 

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. 

Matthew Walsh

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? 

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. 

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. 

Read also The Nature of Boys - vs Nurture  :) 

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. 

Read also:
Risperdal and the whistle that no one heard
Vaccine makers immune to lawsuits according to Supreme Court
Glaxo agrees to pay $3 billion in fraud settlement
J&J to pay $158M to settle texas drug case