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

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! 

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 

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. 

Why I am reconsidering (again) organ donation

Last year I wrote about the personal reasons why I decided to become an organ donor. Today, I am reconsidering that decision. 

Some months back I wrote an article about a little girl who was denied a kidney transplant because she was, quote "Mentally Retarded" (a word that modern medicine doesn't even use anymore, if that shows you how archaic the system that denied her is.) In fact, the internet was on fire with the story. Eventually and after much petitioning and the hospital enduring a firestorm of pubic opinion, she was approved to have the transplant with her mother donating. I was, at the time, appalled to learn that denying people on the basis of their cognitive abilities was not an aberration but routine. 

I understand that there's a lot of prejudice in the word against those with special needs, and it's been part of my ongoing mission in life to fight it, to educate. But even now it comes as a gross surprise that this littleness of thought isn't reserved for the uneducated, ignorant masses. Nope, apparently it's deeply embedded like a cancer in our school system, in our government, in the doctors who have the power of deciding who is going to live and die. And they have decided

that children like 

mine

are not worthy

to survive. 

Here it is. A 23 year old man with high functioning Autism (PDD-NOS to be specific,) has been denied a heart transplant on the basis of his having Autism. And now any single one of us who have children with a special need can't do the all too human mental duck and cover. Because while the first story appalled and enraged me, and while I did my small part to help her case, I don't have a child with an Intellectual Disability. I have a child with high functioning Autism. It is the second story, the latest eye-opener of what has apparently been a prevalent prejudice, that prompts me to look at my radiant son - my funny, witty, intelligent, amazing little ball of sunshine - and realize with a nauseous horror that a bunch of cobweb-ridden relics in the medical field *would not consider him worth saving.* 

I can't even get my head around that, much less my heart. 

You have it all backwards. He is not less. He is MORE. 

I have to admit that since Jaden's diagnosis we've gone in and we've gone in deep. My friends, my community, is the Autism community. The children I know are by majority special needs. My eyes see the world with a different lens. Typical children puzzle me. They are the ones who seem to be distant, aloof, anti-social. I'm sure they are just "normal", but after being surrounded by children who don't know a social game from a game of chess, it's very different. SN children don't play NT games, they don't develop malice, they don't scheme. They love different but they love big. At the age that NTs are learning to reserve and hide a piece of themselves for self-preservation, SNs have all the emotional openness of a one year old. So, we say they're different. But less?? 

Back to the story and the comments section, which is often educating if you like to be sickened by humanity. Many comments from parents who say that their kids were also denied transplants for the same reason. One that says they were lucky; her child had a heart transplant as an infant. She was later told if they had known his dx they wouldn't have. 

One quote: "It's not a matter of placing lower value on his life. It's about honoring the donor." 

That's when I remembered my former decision to become a donor. Had I considered what kind of person I might be saving with my decision? No, I never really thought about it beyond "someone who needs it." What if the donor was able to choose? Could we say we don't want someone of a certain race or religion, or sexual orientation to get our organs? Are we allowed that littleness of spirit? Maybe as a donor I'd much rather be saving the life of a person with special needs than a 70 year old man who drank himself into oblivion for 50 years. Maybe I'd like to say that I wouldn't want it to go to someone in prison, or convicted of certain felonies. Or can I specify no NTs? 

No, I can't do that. They check to see if someone is a donor, then they check who's next on the list that matches. 

I can say that if that list is designed to exclude MY OWN SON, they can go *(^&%^ $@^*&@$#. 

And that is all. 

"At first he was OK with it because he thought, 'At least I don't have to go through that surgery,' " his mother said, "and then he thought, 'Why not? Why don't they like me?'  

"After Karen Corby said she was willing to give permission for Penn to discuss her son's case, health system spokeswoman Susan Phillips said that "the physicians involved believe that any discussion of the specifics of his case would be most unkind to him and therefore will not comment."

--Should Autism block a man from getting a heart transplant?  

Please sign Karen Corby's petition 'Help my Autistic son get a life-saving heart transplant" 

Introducing Chase & Pip!

I added some new tabs to play with so must take a moment to introduce them to you!

First, Chase & Pip star in my first (almost) published children's book, "I Go Exploring".

The page is a little bit under construction. Bad form, I know. My apologies.

Second I'm please to introduce to you Wildflowers for Her!
We begin with a collection of my best poetry, and it's really pretty good. :)
As many writers know, poetry and short stories are rarely money makers, especially while you're still alive. I could have waited until I'm dead but I'm a bit too impatient for that. So instead of allowing them to continue to gather dust and cobwebs I've decided to share them. Click on the link above and follow Wildflowers for Her, or join the email list, to receive updates when I post the short stories. IMO it's worth a look!
Maybe I'll post some inspirational posts "for her" as well. What? I can be inspirational. Stop laughing. 


;) 


Thanks for stopping by! <3 <3 <3