Wildflowers for Jade: 2012

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. 

Wednesday, August 15, 2012

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?  


Sunday, July 1, 2012

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 





Monday, June 11, 2012

Delusions of grandeur and paved roads

When Jaden was discharged from all of his therapies a few months ago, I had some delusions. I have to face it now. There is probably in every mother of a child with Autism a buried fantasy of *when it all goes away* - the war we fight for our children's future - the point when we can breathe a sigh of relief that he/she can talk/walk/read/write/take care of their own needs/has stopped violently raging and won't end up in jail/fill in the many blanks here, and we can skip through life blissfully like, well like a typical family. Where the mountains end and there is a road under our feet. Paved at that. 

OK. For a second I thought I was there. On that road. Before that moment I wasn't even aware that this is what I've been waiting, or at least hoping for. Like I said, buried. Under all that day to day junk that blocks our visions of tomorrow. 

When we learned that Jaden had special needs I threw myself into a year and a half of research that would rival a PHD hopeful. 10-12 hour days were not uncommon. The day I realized my son has Autism I stopped sleeping, almost completely. When my research led to a well-formulated plan, and when I was able to let the experts at The Brown Center take over the heavy work, I had reached critical burnout. The research efforts dwindled to a trickle. I knew what I needed to know. Not everything, but what I needed for Jaden. I still observed their every move through the monitors and participated in the classroom occasionally, and went to their parent training. I did the stuff at home that I needed to. My goals were immediate; Learn to talk, learn to understand speech. Hold a pencil and learn to draw and write. Hold a utensil and self-feed. EAT. Walk without falling over his feet (ok this is still an issue.) Self-care age appropriately. In other words, get him to the level of his typical peers developmentally. 

It was like I was trudging along the line of our goals with my head down until suddenly I was told I'd arrived. What? Arrived where? "Jaden tested in the 'normal' range for everything." He's done. Hallelujah! 

That's when I became delusional. I was looking at "developmentally appropriate" and thinking hell, we're on that paved road now. 

     underwater photography
I'm going to make a confession. I was wanting to leave the "A" word behind. I didn't want to think about it anymore. Being forced into this world was like learning to drown. Eventually I had forgotten all about that "other world" I used to live in before I was forced kicking and screaming to this realm. But now - now I can leave, right? We can go home and pretend the last few years never happened. Oh yeah, I wanted that. To all my fellow Autism parents; I wanted to leave you. 

My delusion was short-lived. Oh I knew he still "had Autism." (Not to get into the great debate, but) I don't really think Autism is something you can, or maybe even should, cure. The brain can be trained to learn new ways to cope with life, but it will never be the same as being born typical. It's just different. Even then, I entertained the notion that I could be wrong. "He's doing so well, isn't he?" 

My dear self: developmentally appropriate does not mean not Autistic. 

We have a lot of recovery. We still have Autism. It insisted on being near his classmates in camp then kept him isolated from connecting with them. It tried to escape the house several times, climbing on chairs and studying the extra door locks in an attempt to circumvent them. It melted down at the mention of door alarms (because that's now next.) It screamed at me, hit me, and bit and tore at my clothes with it's teeth in the convenience store. It raged at me for days on and off between sweet and loving. It wrapped it's arms around my neck then shoved it's thumb into my windpipe in anger. I looked at him and said "I don't get it. You're SO SMART. Why can't you understand how inappropriate this is? Why can't you see that it will get you the opposite of what you're screaming for?" Why doesn't he understand why he can't wander off through the neighborhood or anywhere he wants to by himself? Why can't he remember to use his words? Why isn't he trying to negotiate with me, like my little sister used to with my dad? Why can't he see that I'm a sucker for him and know if he played his very good cards right his life would be - easy? 

Because he has Autism. It's not over, it's just different. I prepared, I worked, and now we've gone on to phase two. I was told that we would go on to meet new challenges but I didn't hear it. He can use a pencil and have a conversation with me now, damn it. So we have the older, brilliant Autistic child who has been rediagnosed with Aspergers, and I haven't even really researched this part yet.   

Paved roads are overrated anyway, right?





Thursday, May 3, 2012

Graduation Day

My very hard working little Jade has graduated from all of his therapies. May 3rd was his last day at BCA! :) 



First day of school

Tuesday, April 17, 2012

Typical people, it’s time to start pulling your weight


Years of therapy - speech therapy, occupational therapy, behavior therapy, and social skills. My 5 year old has worked his butt off to learn how to understand and relate to the typical world. What a smile means, what a frown means, what sarcasm is and why people don’t say what they mean and mean what they say. Don’t hug, don’t touch, don’t stand too close because it makes the typicals uncomfortable. We still haven’t got that down. Typical kids jump away like they’ve never had affection at home. Sometimes I feel sorry for them.

He. Tries. SO. Hard. He doesn’t get it right. The kids are mean. He wants to give up. He echoes lines from his superhero cartoons “That kid is NOT my bro.” He sobs in my lap for a half hour because I won’t let him quit soccer this time.

And I think, it’s not fair really. He was born behind the curve in understanding an illogical world. Meanwhile those for whom learning comes easy breeze through with a scorn and a laugh, some flippant remarks, adults who think we all “take it too seriously” when every day that we go out in public is a war. A war to keep my child from sinking into self-hatred and killing himself. Too dramatic again? Uh oh, better run back to your pintrest and desperate housewives, because today I’m keeping it real.

See, words and attitudes do hurt, even for a child who might not have the finest grasp on words. What he understands less is why he’s an automatic outcast. He takes it out on himself, not knowing how he’s messing it up, but knowing that he is.

My five year old said he hates himself and wants to kill himself. Several times.

At first I reacted by saying I hate Autism. But I don’t. I hate typical. Typical, self-important, entitled yahoos to whom life hands apples and they make quips about what to do when you get lemons.

The week I was dealing with a suicidal five year old, rejection on the playground, new soccer kids in new soccer team who scorn and push and play better, meltdowns in public and sobfests in my arms; that same week I am confronted by an internet post that mocked parents who have screaming kids in target. Bring on the inevitable tidal wave of public opinion and vicious posts about bad parents and rotten kids. I wasn’t mad, yet. I know people are ignorant (though it’s 2012 and the information age, for God’s sake.) I'm always more hurt for Jaden than offended for me, because people think of him that way. Kids do pick up on those attitudes, yes even kids with disabilities. I insert a small PSA about special needs kids and thinking before you bitch, and get the slap down because life is rainbows and I should learn to laugh about it more. “We all have problems.” Yep, I can remember the time I had to choose which coffee to make in the morning and trying to make it home from work in time to watch my favorite show. God, life was rough.

I do laugh at myself, my problems, my issues and my screw-ups. I make jokes about it all the time. Humor and finding the joy in my life, or at least the sarcasm, is part of what holds me together. My husband left me? I have jokes for that. Don’t have a job because I’m caring for my son? Sure, poor humor is rich. You put down my son (or incite others to do the same)? I will tear your fucking eyes out. Fair enough? Some things. Aren’t. Funny.

Jaden is about to complete his 3rd year of therapy. All that to relate to the typical world, and because that’s what he wants to do, not because I give a damn about him looking like a “real boy.” And he’s doing amazing, just absolutely amazing and I’m proud of him and the hard work he’s done. He’s doing great until he’s around typical kids who see different a mile away no matter how much therapy it’s had.

How much time have you invested in your kids, or even yourself, to be able to relate to children/people/families with special needs? If a child with special needs is behind already, and your honor roll kids are so smart, why is it so hard for them to learn how to meet a child with Autism half way instead of making that kid do all the work to get up to their standards? Instead of handing out donations at the supermarket and thinking you did something special, why don’t you spend some time teaching your kids what special really is, why different doesn’t mean bad, and how to be a friend?  We’ve invested 3 years and counting. You can match that with at least a few days.

A child having a meltdown at the supermarket doesn’t offend me, by the way, but a mean-spirited child sure does. I blame the parents.


Wednesday, February 22, 2012

The Nature of Boys - vs Nurture


Before I had kids I thought I knew so much. I believed in nurture’s superiority to nature. I thought that boys must gravitate towards “boy things” more because they were told that’s what boys like. As any mother with sons could have told me - if they could have gotten the words out through their laughter - that is just not the way it is. I admit the deeply embedded “I love cars” gene has my scientific mind baffled, considering there were no cars up until 150ish years ago. (I’m not looking up when cars were actually invented, as a woman I really don’t care.)

It’s apparent that other things are also buried deep within the male DNA. When I had to explain to Jaden some of the subtle difference between our *ahem* parts, and it finally dawned on him that mommy didn’t have an “outie,” his reply was “Oh… I’m sorry Mommy!”

At four years old he was already convinced of the superiority of a peepee.

My son is surrounded by estrogen. All of his teachers/therapists are female, the director at his school is a woman, and I’m his primary caregiver. Meaning I’m the boss. Jaden’s dad, while having some of the all-to-normal subtle forms of the belief in male superiority, isn’t one to spout off a chauvinistic remark. So imagine our surprise when during a casual conversation about office politics, Jaden cried out “Dad, your boss is a woman?! You can’t have a woman for a boss!”

I almost, at that point, gave up any hope for the future of the race.

He is, however, very sweet and considerate. He insists on buying me flowers (with my money) whenever we go to the grocery store, is quick to say “Wow, you look beautiful Mommy!” when I come downstairs dressed up, and tells me often that he loves me and what a great mom I am. And I don’t even have to pay him to do it.

So in spite of his little boys-are-better quirks, and the body-gas humor, superhero and supervillian obsessions, and his having to shoot or beat up every bad guy in town, I do think he’ll turn out to be a good and considerate man. With nurture.